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Posted in Happy Birthday to a Friend we Lost on 16 Jan, 2014 - 10:34 am

Happy Birthday to Barry Coles a friend we lost last year and someone who was always there to help with any advice and was an expert on O2 treatment. R.I.P our friend you are sorely missed by all on here.

Matt
Silent Planet


Posted in Ride for Awareness on 14 Jan, 2014 - 11:55 pm

Please, is there nobody interested in doing this. We would like to bring this condition out in public and not keep it hidden away where only suffers and supporters are the only ones that know anything about it. Please don't let this just disappear please read the thread and respond here or PM me.

Matt
Silent Planet


Posted in Hi Everyone on 14 Jan, 2014 - 11:20 pm

Hi All,

Well I'm still here alive and kicking, just over a month ago I had a Lidnocain infusion which went for 5days. After the infusion my Chronic Cycle has changed. I am not getting the continuous shadowing that I was getting is nowhere near as bad as it has been since November 2010, but now the attacks are far more severe and more frequent and pretty much only at night time. They have changed some of meds around with the hope of this making a difference to the cycle. Unfortunately all that seems to have happened is that the pain is now a lot more worse than it was before.

Today I had more surgery to move one of the leads around 2-5mm to se if they could get more stimulation on the occipital nerve. They kept me awake during the whole procedure while they used local to numb up the area and then cut into me, removed old anchoring stiches so they could move the lead into a better position. The stimulator was on the whole time so I could feel it. I could also feel the Dr pulling and tugging on the lead as they repositioned it.

Now it will be a waiting game to see if repositioning the lead will make the unit work better that it has been. The main concern at the moment is, as I am prone to getting infections we are hoping that the unit doesn't get infected as they would have to remove the whole thing and they won't be replacing it as they have already spent well over $120K on the previous surgeries. So if we have a failure then we will be at our wits end as we have nothing else to try and no new meds on the horizon that we know of.

I will keep you all updated as to what is happening, I hope that we are all on the way to being pain free in the near future.

Matt
Silent Planet


Posted in Ride for Awareness on 09 Dec, 2013 - 3:45 pm

Hi All,

I know that I have gone on a lot about this subject, but it is something very close to my heart. I was talking to one of my specialists today about to web site and how we would like to do a Ride For Awareness. His response that we should do it or something like it to make the general public aware of what we go through and to try and bring the general medical profession up to date with what this condition is really about. The medical profession has no idea what we suffer with and they are only just starting to realise that yes we do have a real illness and not just a simple headache as some do and refuse to treat us because its to hard for them. With a little bit of research by G.P's they might get to understand what we are going through. As I said I have in another post "I'm Still Alive, Hi All", I have been going through a rough patch lately and it really made me realise that when any one of my Dr's go on holidays the trouble I have to go through just to try and get some medication or even just to be seen by them, due to the fact they don't know enough about the Beast. So this brings me to the next part of this post.

There is a lot to be done to get a ride off the ground so I would be looking at early 2015 to actually do the ride. As I have said to be able to do this we need as many people to join us in getting this organised. I would like to see all members and supporters join us to get this off the ground, it doesn't matter how small or big a role you play in this its more the fact that you have helped to try and promote a cause we are all passionate about. I would like anyone with management, advertising, banking, accountants, lawyers or any people with contacts in the travel, hospitality, car, bike and clothing, telecommunication or I.T industries to PM me with their details and what they can do.

We need to get as many big companies on board with this so we are not out of pocket and any and all money raised from this can go towards research into The Beast. We also need to start up a foundation, so anyone have any experience within the running of a charity all the help that you can give would be most appreciated.

Please PM or Email me mjsun@bigpond.com with what you can do, if you want to do the actual ride (all or part it doesn't matter) or be in the support group or the charity side of things. Every little bit helps in the overall big picture.

End of Rant for the time being. Look forward to hearing from as many of you as possible and or meeting all of the great people on here in the near future. Please let all your friends know even post on ant Social Media sites you may be on, you never know there maybe someone out there that we could be looking for that can give us the support we need.

Matt
Silent Planet


Posted in Ride for Awareness on 09 Dec, 2013 - 1:17 pm

Hi All,

I know I rant on about this subject a lot, but it something close to my heart. I was speaking with one of my specialists today about the web site and how we would like to do a ride. He was saying that something needed to be done to bring this condition to light with the general public and all of the medical profession. As we all know we have enough trouble trying to find a G.P of any sort to try and understand what we go through.

I would like to plan to have everything up and running and ready to go by early 2015, due to the fact that there is a lot of preparation th


Posted in Ride for Awareness on 09 Dec, 2013 - 1:17 pm

Hi All,

I know I rant on about this subject a lot, but it something close to my heart. I was speaking with one of my specialists today about the web site and how we would like to do a ride. He was saying that something needed to be done to bring this condition to light with the general public and all of the medical profession. As we all know we have enough trouble trying to find a G.P of any sort to try and understand what we go through.

I would like to plan to have everything up and running and ready to go by early 2015, due to the fact that there is a lot of preparation th


Posted in GREATER OCCIPITAL NERVE BLOCK on 09 Dec, 2013 - 1:01 am

Hey there Kim & Peter,

I have had 2 nerve blocks done, by the sounds of it you are getting the Trigeminal Nerve blocked. That's the nerve that runs from the base of the skull to the top of the skull and then there is the Oxcipital nerve that runs from the front of the skull just where your eyebrow is and runs back to where the Trigeminal runs to.

I had a Spheno Gangleon Paletine nerve block which is a nerve that is near the top of the pallet in your mouth. They inserted a needle in through the side of my jaw to the top of my pallet. The nerve was injrcted with Lidnocaine (Local Anesthetic) to turn the nerve off. This can be quite effective as the nerve can be turned off anywhere from a couple of weeks to a number of months. There is no telling how long it will be turned off for as the nerve does what it wants to.

The first time I had it done it was quite effective for some time I think it was around 12 months that I was pain free for, the 2nd time it was done it had the opposite effect and made things worse. I think that it didn't get the nerve correctly and might have damaged it a little.

Has anyone talked about a nerve stimulator implant or there is a new sort of TENS machine out now where it is battery operated and you put it on the Corroted Arttery and you control the amount of stimulation that is given to the artery. The only problem is that when the battery runs out you need to throw away the machine and buy a new one and I think they are around $500.00 per unit. I managed to get one for free and unfortunately I had no success with it.

I hope that this information is helpful for you. I would suggest doing as much research about it and the Dr who is doing it for you. I can only suggest that you give it a go, with our condition we have nothing to lose if we don't give anything a go that could be of benefit to us.

Good luck with whatever decision you decide to make, but please as you said, do keep us informed as to what you do or any outcomes that you may have.

Matt
Silent Planet


Posted in I'm Still Alive, Hi All on 07 Dec, 2013 - 9:03 pm

Hi All,

I haven't been around for some time, but I see that we have a lot of new members on here. Welcome to you all and sorry to see you all suffering. I hope that a lot of you are pain free and enjoying a normal life again or as normal as can be.

As some of you know I have been in and out of hospital quite a lot over the past few years, with having the nerve stimulator implanted 3 times and numerous infusions done to try and combat this Beast we all suffer. Well I'm back in hospital again having another infusion done, since around 27/11/13 I have been on a downhill spiral with the pain getting increasingly worse every day. All the Dr's kept telling me to do was increase my abortive meds and see how you go. I was on Endone 40mg per day and they wanted me to increase it to 50 - 60 mg p/d and my quality of life wasn't getting better, I know some people on here don't agree with taking narcotics but what works for one doesn't always work for others. Usually when they get this bad they put me on Morphine Injections so I can get some relief and a little bit of sleep at night. Up until Friday the 6th Dec I had only eaten 3 meals over a period of 9 days as I was waking up sick every day throwing up all the time.

My Depression had also become worse with me sinking into a nasty black hole and taking it out on my family. I also wasn't getting out of bed and didn't want to go outside and face anybody and of course all the antidepressants I am on were doing Jack Sh*t for me. I have been told by my hospital Psyc that I need to see someone on a regular basis. So I found a new Psyc to see but every appoint that I have made with him has had to be cancelled due to the Beast interfeering.

I am now back in hospital for the next week having a Lidnocaine Infusion and changing some of my meds around I hope that it will settle it all down to a position where I can handle it better and try and resume my not so normal (Normal For Me) life again. The Dr[s have also taken me off the Endone and changed it to Oral Morphine, which is helping a little bit. It is giving me a small window of relief and I'm not so crabby every day. They have also added another med called Flecanide which is a tablet form of Lidnocaine. Before you can go on that one you need to have an Echocardiogram done to make sure your heart can take it. I also suffer with a condition known as Sinus Badicardia which means that my heart beats at less that 60 Beats Per Minute (BPM) instead of the usual 80 - 100 BPM for the average person. This stay in hospital is getting me ready for my next surgical procedure in January where they will be moving one of the nerve stimulator leads about 1 - 2 mm to see if they can get better simulation from it. I will be awake during this procedure so they can test it, but there is a possibility they will have to put me under so they can get some more lead for when they do surgery. We are hoping that this works as we are out of options after this and I'm getting tired of being the human test subject, as most of us are with any treatment that we try.

Well enough of my ranting, Glad to see all the new faces on here and sorry that you have to be here. I hope to hear from some of the older faces on here as well. I would also like to wish everyone a Merry Christmas and a Happy New Year and a pain free holiday break so we can enjoy this time with our families or friends. If anyone is going away over this time have a safe journey, take breaks and don't drink, text or talk and drive. We don't need to add to the road statistics we go through enough crap as it is.

Matt
Silent Planet


Posted in Sumatriptan 6mg auto injectable on 03 Nov, 2013 - 1:49 pm

Hi Mandy,

You are one of the rare ones that suffer with Migraines and Clusters, this can make treatment very difficult. Can you tell the difference when you get a Cluster or Migraine, as sometimes what works for one will not work for the other. you mentioned that in conjunction with O2 treatment you also use Steroids, what Steroids do you use?

What dosage of Verapamil are you on at the moment, you need to make sure that you get you B/P checked and ECG done on a regular basis and when first starting or when you increase dosages on verapamil you can get rather dizzy sometimes.

Imigran injections are a god send for anyone that suffers with Clusters as they work very quickly, the only draw back is that they can't be used in conjunction with certain other meds as they interact with each other. I used to use the injections until I became a chronic sufferer, the episode that I am currently in has been going on since November 2011 and has not let up, so for me to be using the injections all the time it would send me broke. As they are only on private scripts you should be able to claim them if you have Private Health Cover or if you need to go to hospital for O2 treatment most times they will give you an Imigran injection instead of giving you Morphine or Pethodine. Stemetil injections can also help as yes they do help with vomiting, they can also make you a bit drowsy to help get some sleep.

As to why the O2 isn't working like it used too when you first started, I'm sorry but I have no answer for that except for like everything else to do with Cluster Headaches everything that is used can be a bit hit and miss. As we have no definite cause for CH there is no one medication that can be prescribed to prevent or abort attacks. As you can see on the L/H/S with all the different tabs we have one marked medications, there you will find a list of meds that have worked for others who suffer.

I hope that this answers some of your questions. On a side note, you may have seen a thread titled "Ride For Awareness" if you have time it would be great if you could have a read through it that would be great. If you are able to help out in any way that would be even better or if you know anyone that may be able to contribute that would be great.

Good luck with this bout and hope that it ends soon.

Matt
Silent Planet


Posted in Deseril Discontinued? on 28 Oct, 2013 - 2:16 pm

Hi Chris,

I'm not sure where Maidstone is located, but a company called LINK in Warriewood, Sydney, NSW has got some supplies of Deseril 1mg, they are due to go out of date but have been approved for distribution and sale. If you can get your local pharmacy to contact them you might be in luck and get some.
I too am on Deseril at the moment, I am due to come off them as I have been on it for 6 months now and need a break from it for a month. Not sure what i'm going to do after that.

Good luck in locating some.

Matt
Silent Planet


Posted in Ride for Awareness on 26 Oct, 2013 - 3:10 pm

Hi Chris & all the New Members,

I am still keen for this ride to happen, I have started bike riding again and usually do a 10-15km walk almost everyday. I am delivering pamphlets in my spare time to try and keep busy and get fit. Sorry I haven't been around for some time, as some of you know I have been suffering with this bout since Nov 2010 with no let up. I have also had 2 trips to the US in the last 12 months for family holidays. Over the last 7weeks the pain has been at its worst and so has the depression, so I think that trying to get something organized would take my mind of things. I have also just joined the NSWRFS in their control centres so I wont be out there fighting the fire but directing everyone where to go.

So as Chris has said, please lets get this up and running (or riding) so we can get CH out there and make people aware of what we go through on a daily basis. There's a reason that they call them "Suicide Headaches". So no matter how little you can contribute to the ride, it's better than not doing anything at all.

Chris PM me with anything that you need help with, I am keen to try and get some big sponcers on board to help with Accommodation, Flights, Support Cars & Communications, but to beable to do this we need as many people on board from here to get the ball rolling.

End Of Rant
Hoping that you are all pain free at this time.

Matt


Posted in Hi all on 26 Apr, 2013 - 1:16 pm

Hi Ben,

I will start a new thread all about ONS and give all the info that i have so everyone can see what they are like and not be scared of doing it.

Matt


Posted in Hi all on 17 Mar, 2013 - 12:17 am

Hi all,

Just thought I would let you know how things are going. Still getting pain everyday at the moment in the mornings and later at night. I am not letting this ruin this long weekend for my son and I, the unfortunate thing is that Tim my son came down with a Gastro bug earlier in the week and still has it. So as you could imagine a lot of time spent in the toilet for him, but we are trying not to let it get us down. Still have 2 days to go, 1 more of the festival and the last day to check out some of the sights and wineries around the area. I will also be uploading photos from this weekend to my Facebook page next week, so if you would like to see them please look me up on Facebook under "Matthew Sunn" from Harbord or Freshwater and add me as a friend.

I hope all is good with everyone and you are all in my thoughts and hi to all the new members to the site. I will go through and read all the new posts and info on our new members next week at some stage.

Matt
Silent Planet


Posted in Hi all on 15 Mar, 2013 - 12:25 pm

Hi everyone,

Just to let you all know I am still alive and kicking. If anyone is going to CMC Rocks the Hunter this weekend please let me know and maybe we could meet up whilst we are here. I am staying at Peppers Guest House till Monday if anyone is interested.

I will be back on the site later to check if anyone is interested, other than that I will update everyone as to what has been happening over the last few months. For all those who are on Facebook please look up the Cluster Headache page a click like, and let me know that you are from this site so I can add you to my friends list. I am also one of the admins for this page as well it would be good to see all the people from here on the Facebook page as well.

Hope everyone is good and pain free.

Matt
Silent Planet


Posted in Hi Everyone on 24 Dec, 2012 - 12:46 pm

Hi All,

Just wanted to wish everyone a Merry Christmas and a Happy New Year and a safe holiday period. If you are going away for the holidays please be careful on the roads as there are so many fools out there.

Matt
Silent Planet


Posted in Hi Everyone on 20 Dec, 2012 - 9:32 am

Hi Everyone,

Well i hope that everyone is ready for the festive season.

As you know i haven't been around for awhile, over the past few months i have been to hell and still waiting to come back. The CH's are getting worse every day with no end in site, this episode has been going on since November 2010 and i still haven't been able to break the cycle. After all the surgeries things still are not easing up. The last surgery went well with no infection but the stimulator still isn't working like it should. One of the leads seems to out of place by about 1 - 2mm, they were going to go in and try and move it but then thought that if they go back in there is the risk of another infection, so they decided not to.

Over the last few week if have been going through a complete detox program getting me off all the narcotics that i have been on over the last 2 years. the doses were getting up the very dangerous levels but my body was handling very well and the Dr's were very concerned about it and couldn't keep upping the doses. I was back in hospital a couple of weeks ago to start the detox stayed in for a week and released to complete the rest at home over the next 2 weeks. After that i will be completely free of all narcotics. While this is going on i am not allowed anything for the pain just have to try and use the stimulator and see if that starts working now that i am drug free. There was a thought that the drugs were stopping the stimulator from doing what it was meant to be doing.

At the moment i am getting very little relief from the stimulator and the pain seems to be getting worse and all i can do is hang in there and try and get through the pain. they are also hoping that once the detox is complete the CH may revert back to the way it used to be and that was episodic, but won't know for atleast 6 weeks. They also said that i may also end up back on the drugs again at some stage down the track if things don't change. I have also had to increase my Anti Depressants as my moods are so up and down it's not funny (LOL). I get to a point sometimes where i do feel like ending it as i've had enough and i can't keep putting my family through this any more, then i think that i can't leave my family in that fashion as that would kill them. The mind works in strange ways when you get depressed you just keep thinking all the time and can't switch off. After over 30 years of CH like everyone here you get to a point where you start thinking how much more can you take of this, using the same old meds and getting nothing out of it and nothing new coming on the market and very little research being done to help us.

Once i have completed my detox and the festivities of Xmas and the New Year are over i want to start concentrating on getting the Cluster Headache Australia Foundation and the Ride For Awareness up and running. I know we have spoken about this topic before but lets start the new year off with a positive and get this happening. If there is anyone out there who is a lawyer or Accountant who knows about starting a not for profit foundation please PM me so i can get started, if anyone has contacts in and major corporations that maybe willing to offer some sort of sponsership please let me know. I would like to hit companies like Telstra, Coles, Woolies, Virgin Aust etc and see if any of them are willing to come on board. This can only happen if we all get together and help out in any way we can, it doesn't how big or small the input is every little bit helps.

So sorry i haven't been around much and welcome to all the new members that have joined the site i hope that you find solice with all the information that we have to offer nad the friendship that we give.

There endith my rant and rave, i hope that everyone has a very Happy Christmas and a Safe New Year. i hope that we can be pain free for a couple of days to enjoy the festivities over the next 2 weeks.

My thoughts and prayers are with everyone and especially Barry and family.

Matt
Silent Planet


Posted in Cluster Headaches Australia foundation and Ride for Awareness. on 10 Sep, 2012 - 1:02 am

Hi all,

I know that I always seem to be talking about this, but to get this happening I need help in doing this. I am looking for some volunteers in sydney where we can get together on a regular basis to discuss ways go raising funds and getting major corporate sponsers and organize major fund raising events and bringing awareness to the general public.

As I said in a previous post I am looking at the possibility of not going back to work for the rest of my working life, I now have the time to be able to dedicate my time to getting this up and running. If there is anybody in the same position as me and would like to be a part of this we could make this a very big thing.

Please PM me if you are interested and everyone who does will be kept private and confidential. Everyone on this site is welcome to join in and help out but I would like people from sydney so we can meet up on a regular basis for meetings.

Regards

Matthew Sunn
Silent Planet

P.S: please join me on Facebook to say hello and have a look at some of the photos from the USA. Just look for Matthew sunn,


Posted in Nerve Implant on 07 Sep, 2012 - 5:47 pm

Katherine,

the Doc needs tospeak to the Neuro Surgon first to get me on a regeim of antibiotics before the surgery. the detox wont happen till after the surgery and we see what the implant is doing.

Matt


Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 07 Sep, 2012 - 12:32 pm

Katherine,

it is always good to check your BP and heart rate when on Verapamil, if you always have a low BP and since starting the meds it hasnt made any changes and you are feeling no adverse reactions to the meds then there should be no reason to take you off it as lonf as you stay monitored. I was on doses as high as 960mg per day and had no ill effects excpet a little dizzines when i increased the doses all the time but that settled down after a week.

If the meds are working then when you see the Dr's again then stand your ground and let them know that it is wrking and that you would like to stay on it for a bit longer, if that;s what you want to do.

Matt


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 07 Sep, 2012 - 12:19 pm

Just completed it,


Posted in Nerve Implant on 07 Sep, 2012 - 11:58 am

Hi All,

Saw the specialist yesterday and he has advised that he will be opperating agsain to replace the front lead. The unfortunate thing is that he only gives it a 10% chance of working and giving me the relief that i had with the 1st 2 implants.

He would also like to get me into a detox program to get me of all the narcotics, so i could then particapate in a pain management program. My only worry id=s that if this doesnt work that there is nothing left to try and i dont want to be on a disability pension for the remainder of my working life, i still have a good 25 yers left in me yet.

Now that i am back i will be getting into the full swing of things for setting up the foundation "Cluster Headaches Australia" so then we can get the bike ride under way and call on some major sponcers to get involved with the cause.If anyone wants to get involved in the setting up and runnong the foundation i will need some people who can put the effort in fulltime like me to get this up and running. With anyluck we can make this a fulltime job and be able to get paid for running it. Just PM me if you are interested.

I will be adding photos of the holiday on facebook so make me afriend and come and have a look. Look me up Matthew Sunn.

Hope that some of us are getting into the green and staying away from the red "Unless it's the drinking kind".

Matt
Silent Planet


Posted in Nerve Implant on 26 Aug, 2012 - 1:26 pm

Hi All,

Well we arrived home on Saturday morning after 3 hectic weeks of traveling, now i need a holiday to recover from the holiday that i just had. We all had a great time and went to various theme parks and have around 2000 photos to go through.

Ben, in answer to your question. The pattern of the CH did change i normally get the worst pain in the late afternoon, while OS it was coming twice a day in the morning and the arvo. So i would say that the change in lattitude did change the pattern of the CH. i am hoping that now i am home that the pattern will revert back to the way it was as having them twice in the day lasting for about 3 hours at a time is bloody anoying as we all know.

I will be posting photos on facebook later for all those thqat are on FB you can add me as a friend, just look me up under Matthew Sunn and add a comment that you are from this site.

i hope that everyone is well and getting into a pain free time.

Matt
Silent Planet


Posted in Questions; on 22 Aug, 2012 - 4:31 pm

Gunnolf,

I would have no hesitation in bringing these new symptoms to your G.P and Neuro, you should even print out some of the info located on the left hand side in the various tabs and take it with you and show them what you have found out. If you find that you are not getting the results that you want then there are a number of Dr's listed for the various States that understand this condition and can confirm if you do have it or they a severe migraines and can offer different abortive and preventative medications if the ones that you are on don't seem to be working. There are so many meds out there that work for both conditions.

Please remember that we are not Dr's and that you should consult your Dr before starting or stopping any sort of medication or treatment.

Good luck for when you next see your local G.P or Neuro.

Matt
Silent Planet


Posted in Nerve Implant on 13 Aug, 2012 - 4:24 pm

Hi all,

Having a great time in the U.S, seeing lots of things between CH's have had to take a few meds to try and get some relief from the pain. Trying to get as much done and not letting the beast run the holiday. Went out to dinner tonight at Hoot Hoot Hooters, had a great time their, the kids thought that it was an owl restaurant due to the name. The girls want to go back their again but somehow I don't think I will be allowed. Going to Sea World tomorrow for the day.

Have to change rooms tomorrow as the door on our room is faulty and sticks all the time making it hard to get in and out.

I hope that everyone is doing well and going from red to green, I will Chek back, in a few days.

Matt
Silent Planet


Posted in Not good news but getting better on 11 Aug, 2012 - 5:13 pm

Hi Barry,

I am so glad to hear that you are not going through the side effects that we all hear about. I know what you mean when you say that you need to be kept active and being told that you can only sit around while you go through the treatment, there is only so much you can do and so much T.V that you can watch and that going for a long walk is out of the question in case something happens. Have you thought about writing a book about Cluster Headaches or something along the lines of a fantasy book. I have one in progress and add a little bit at a time when I am in recovery mode. It must be hard being away from your home, but at least you have family that can put you up while going through this.

Please don't put yourself out to keep us updated but it is nice to read about any good news that you might have. Get well and look after yourself, you are in my prays and thoughts.

Matt
Silent Planet


Posted in Nerve Implant on 07 Aug, 2012 - 4:58 pm

Hi all,

Just thought I would jump on and say hello from the U.S, landed in L.A on Friday and then headed to San Francisco on Saturday morning, the drive was long but a good one. Getting used to driving on the wrong side of the road and getting into the car on the other side. We are here for a couple more days before we head back to L.A for 2 days then drive down to San Diago for 5 days then to Disneyland for 5 days then back to L.A for 3 days before coming home. Having a great time sight seeing and shopping, getting used to the oversized meals and the tipping with everything. Can't get over how cheap everything is here compared to Australia.

The head hasn't been treating me very well, most days I can deal with it but today was the worst so far with having to have a shot of narcotics to get some relief before dinner. I was quite surprised at how easy it was to get all my narcotics, needles and syringes through customs. There were no questions asked what so ever, they didn't even want to see any of the letters that I have from the Dr's I had.

The people are so friendly over here, the only disappointing thing so far, we couldn't get tickets to go to Alcatraz island as it is booked out three weeks in advance, we are hopefully going to the Jelly Been Factory and attending the Jelly Been University and get our degrees in jelly been making.

I hope that everyone is doing well and that more people are going from red to green and Barry once again how sorry I was to hear of your news and that my prayers and thoughts are with you and your family as you go through this troubling time in your life. I will check in again in about a weeks time and see if there is anything else going on and if anyone else has got some good news to share with us all.

Thoughts are with everyone back in Aus.

Matt
Silent Planet


Posted in Not good news but getting better on 27 Jul, 2012 - 11:42 am

Barry,

I'm sorry to hear that you have found out that you have this terrible disease, my mother inlaw had cancer many years ago and came through it after many years of treatment. i hope that for your sake thatt option 2 is the outcome that you get.

I know that words can't do much for the illness but i hope that they can give you some hope for the outcome, we need to be thinking in a positive way for you and your family. I will be praying for you and your family that everything has good results for you.

Please keep us informed as to how you are going, I know that I don't live near you but if there is anything that i can do to help please don't hesitate to PM me, in times like this we all need to stick together and help each other out in whatever way we can even if only words of hope.

Matt
Silent Planet


Posted in Nerve Implant on 14 Jul, 2012 - 3:59 pm

Hi All,

I thought that i would update everyone as to how things are going, over the past few weeks my moods slumped to another all time low. The Dr's have taken me off the Endep witch is for the pain and the depression as it wasn't doing much for both, they have now put me on Cymbalta for the depression which seems to have helped as i am much happier with myself at the moment. It isn't helping with the pain as it appears to be getting alot stronger with shadows sitting around 4-5 every day and then most nights 4-5 attacks of around 9-10 lasting around 1.5 hrs every attack. They have still got me on the narcotics so i can get some sleep of a night time.

I was speaking with my Pain Specialist the other day as i need letters for my meds for when the family and I go to the states in August. He dropped a bombshell on me saying that he is dissappointed with the implant and that he is going to open me up again to reposition the lead at the front. The omly thing that he is worried about is the infection side of things, if it does get infected again then he will have to remove the whole implant again.

I was hoping to be able to try and get a job towards the end of the year, but it looks like that isn't going to happen anytime soon.

Matt


Posted in Reaching Out on 04 Jul, 2012 - 12:53 pm

Hi Heather,
I need to contact the tax office and see what i need to do. i also have to speak with my accountant. We will need to set a board of directors and 2 treasures to handle the accounts. We will need to get a web site and tie it in with this one with Roger's permission of course. We need to set up some sort of PR team and event organizers to help with fund raising. It would also be good if we could find an Australian personallity who also suffers with CH and get them on board.

I would also like to try and contact some high profile corperate sponcers to come on board as we will need them for the bike ride.

So the more people that we can get on board from here would make everything a bit easier, if anyone has some of the skills mentioned above that would be good and you are able to help out or put us in the right direction. The more volenteers that we can get the better it would be for the Foundation, the more money we will have to be able to give out to support people in need with medications and daily living expences.

We all know that CH can make it very hard to live with, so the more support we can get the more lives and families we can help.

So please come on board and help us make this and the Ride for Awareness a reallity and not just a dream.

Matt
Silent Planet


Posted in Reaching Out on 03 Jul, 2012 - 3:33 pm

Thanks Peter for your offer to help, Heather i know there is a lot to digest at the moment. I would like to see some responces from the other members on the forum, im sure that there must be some other people who can help out with this. Peter you are right we need to be a registered charity for any donations that come in for the Ride For Awareness.

I would like to see some of the newer members get involved as they learn more about this terrible condition that we all suffer with.

Roger is there any problem with using the name "Cluster Headaches Australia"? If there is please let me know so we can come up with another name.

Matt
Silent Planet


Posted in Reaching Out on 27 Jun, 2012 - 10:03 am

Hi All,

Over the past few years from being on this wonderful site, i have noticed one thing with everyone. We all struggle at times Mentally, Physically & Financially. The first two things i can't do much about except for being here and being able to listen and offer advice, the last thing (Financially) i would like to try and set up some sort of foundation where we and the general public can donate to and build up some funds that can then be distributed to families that are struggling financially. With the cost of living going up and the costs of some of the meds that we need to take that are not covered on the government system some people need the help from others and are to proud to ask for the help. I know that some people are not able to work because of CH and do struggle, don't be affraid to ask for help there are people that will help and don't judge you, all they want to do is see that you are ok. I was to proud to ask for help but i got to a stage where i couldn't cope anymore and made the call and i got the help i needed just to keep the utillities connected. Vinnies went above and beyond what i expected and even gave me hampers for Xmas and bought my chilfren presants for Xmas.

There are some very good charities out there that can help with vouchers for food and they will even pay for your utillities so the don't get disconnected but the one thing that they can't help with is the cost of medications.

I would like to set up a not for profit foundation with the help of some of us on the web site to help with the administration of the funds under the name of "Cluster Headaches Australia". If ther is any objection with using this name please let me know so we can think of another name.

If you would like to volunteer to help with this please PM me so i can do a list and put in the PM what you would be able to do. I will start to make some calls to try and find out what has to be done to set it up.

I hope that one day we can get the recognition that we need to make the general public more awear of our condition and make the foundation a worth while project.

Matt
Silent Planet


Posted in Second Opinion on 27 Jun, 2012 - 8:40 am

Hi Red,

It is good that you have found a Neuro that knows what they are talking about, you might want to add them to our list of Practitioners on the left hand side.

Witht the Verapamil i was on high doses up around the 960mg per day, when i was in remission (rare occasions) i redused the dose down to around 360mg so i still had it in my system and as soon as the attacks started again i would increase to doses.

With the oxygen i would be getting a home supply now and not waiting, it isn't very expencive to hire. It would be good to have it on hand for when the next attack starts. You need to get the O2 going and the onset of the CH and not wait until you arrive at the ED of your local hospital, even with the letter you still may have to wait until they can get you in.

I hope that this helps you in some way.

Silent Planet
Matt


Posted in Nerve Implant on 21 Jun, 2012 - 11:00 am

Hi All,

I went and saw the Specialist yeaterday and the news wasn't as good as we ahd hoped for. He still has no idea as to why one of the leads is not working propperly. He is still trying to get more information as to what he can do without opening me up again, on a brighter note he said that i am in the clear from infection. That was the good news the other problem that i am having is my moods are all over the place and i snap at the drop of a hat, i know that most of it is due to the meds that i am on and i sort of expected it from the narcotics but the anti-depresants are not helping any more so he is trying to get me in to see the Psyc as soon as possible. he is very reluctent to remove the implant as we are hoping that it will come good at some stage.

He understands and sort of knew that this sort of thing might happen and even asked if i was thinking of ending it all, my answer was not at the moment got a holiday planned to the states for three weeks. He is giving me a letter so i can take all the narcotics that i need for three weeks with me. (I could make a fortune in the states with it all - LOL) at the moment with the implant not working like it should and all the drugs screwing with my head this holiday is what i need. My family is on the verge of splitting up because we just want some good results so i can be pain free for awhlie. this bout has been going since Nov 2010 and as i have said before as i am getting older the cycles are lasting longer and the pain seems to be getting worse all the time. There are shadows every day sitting around 2-3/10 and then all of a sudden it shoots straight to 9-10/10 and that is lasting for around 2-3 hours every time and this is 2-3 times every day. We are at our wits end and we don't have anything else that we can try anymore.

I hope that everyone else is doing ok and that Heather you are enjoying your trip in the Motorhome.

Matt


Posted in Harry Potter gets CH on 21 Jun, 2012 - 10:35 am

I feel for Daniel, but it is good as you say that we now have someone who is famous in the family now. It would be good to see if he is willing to join then group and be just one of us and not the personality that he is.

As we all know we never hear or read about CH, but maybe some other personalities will reveal their secret that all of us suffer with on a daily basis.

Matt


Posted in Has anyone heard from!!!! on 11 Jun, 2012 - 7:07 pm

Hi Emma,

Firstly let me say welcome to the family of CH's and sorry that you have to be here.

I have had to deal with Cluster headaches for the last 38 years so i have learn't to cope with them in different ways. I also used to use cold packs to help deal with the pain, in the last year I have had three Nerve Stimulator implants. The first 2 got infected with Staf, so far this 3rd one is going ok with no infection but the sitmulator is not working as well as the 1st two did. I am still on very high doses of opioids every day with injections of Morphine every 2nd day.

We are hoping that the surgens don't have to go back in and move the lead around to reposition it. If they do it won't happen till after my family and I get back from the US in late August. My specialist is talking to a few other Neuro Surgens in Vic to get some advice as to wheather they would go back in or not. As i am the first person in Aus to have this done that we know of it is a bit of trial and error, thay have done something simialr for Migraine Sufferes and they do it in the US. There is a topic called Nerve Stimulator somewhere on here which describes all about the proceedure.

I hope that this helps you, please feel free to ask as many questions as you want. feel free to read and print out any information that you want to and take it to any of your Dr's so that they can read. Please remember that we are not Dr's and that all the information that we post is from our own experiances and that you should always check with your Dr before starting, changing or stopping any medications.

Matt
Silent Planet


Posted in Has anyone heard from!!!! on 11 Jun, 2012 - 11:24 am

Hi Emma,

If you look on the left hand side at the tabs there is a tab for practioners that are known to have delt with this condition, i'm not sure where Redcliffe is located but there are some Medico's listed that might be near where you are.

Matt


Posted in URGENT --Submissions to support application - PBS Botox - DUE 13 JUNE on 11 Jun, 2012 - 11:20 am

Hi All,

I have made my submission for Botox to be listed on the PBS system, I hope that this does go through so it can help many more of us that suffer with this condition. I urge anyone and everyone that uses this website to fill in the submission form even if you don't use Botox someone else may get the benefits from this. You never know one day we might have to apply for a medication that you are on that is not on the PBS system.

Matt
Silent Planet


Posted in Has anyone heard from!!!! on 11 Jun, 2012 - 10:23 am

Hi All,

Has anyone heard from Shell or Cory over the last few weeks, i just wanted to check and see that they were doing well. I know that they have been going through a rough time lately and just wanted to check on them.

If you have heard from them, could you please PM me.

Matt
Silent Planet


Posted in Nerve Implant on 29 May, 2012 - 11:38 pm

Hi All,
Just as i start thinking that ther cycle might be on its way out everything starts getting worse again, the last three days have been crap for me with the pain starting to get worse and more frequent. I was coming off all the narcotiocs reducing to low dosages, now i have to start going up again. The implant is not doing what i was hoping they would. They are working but but it is very hit and miss, that's after it has been programmed three times and the stimulation sensation has been increased by 60% the last time. Going to see specialist tomorrow and see what he has to say.

For those that are considering the implant surgery do not take what has happened to me a as deterant for not getting the surgery, i have been one of the very unfortunate ones.

Matt


Posted in Nerve Implant on 25 May, 2012 - 11:54 pm

Hi All,
Well i saw the specialist on Wednesday, he has taken me off the antibiotics and wants me to have more bloods on Sunday before i see him on Wednesday next week. I spoke with him about the lead that i am having trouble with, he sent me to get X-rays to check that the lead was still in place. He said that he could see the end of the lead through the skin and it seemed to be in place.

The specialist is dissappointed with the results at the moment as this is the 3rd implant and it isn't working as well as it has done in the past. So i will be going backnext week to see what is going on and take it from there.

Matt


Posted in preventative meds on 21 May, 2012 - 10:38 am

Hi All,

the first thing that i will say i always read the info that comes with any medications and find out as much info as you can with any side effects and long term usage. With that said it is always good to try and reduce the dossage of your meds when not in cycle due to the fact that when you go back into cycle and you are on a high dossage you might find that the dossage you are on is not working and you need to then up the dossage. It is always good to have room to play with your dossages as you will get to a point that you are not able to increase to dossages any more. I was on 960mg of verapamil and was not able to go any higher i was lucky that it didn't play with my blood pressure and it stayed the same when on it and off it.

For those on Deseril please make sure that you have a break from it as it can cause Kidney or Liver problems, you can only take it for short periods and then need to have a short break from it before starting back on it.

Please always remember to consult your Dr or Specialist before doing anything with your medications as sometimes just stopping your meds can cause more problems for you that when you are on them.

Matt


Posted in Nerve Implant on 21 May, 2012 - 10:07 am

Hi all,

We were albe to go up North for the weekend as planned, still getting the CH's. Getting some relief from the implant, still not sure if there is any infection growing, still on the antibiotics for another few days then will have some more bloods done a week after i finish antibiotics. Still having trouble with one of the leads, not getting the stimulation that i have had with the other 2 implants. Just have to play the waiting game at the moment.

Going to see specialist on Wednesday and will discuss this with him.

Hoping everyone is well and getting some pain free time.

Matt


Posted in New to forum long time CH alien on 04 May, 2012 - 11:24 am

Hi Roy,

Glad to see that you have found us, you say that you don't like Dr's or Specialists have you thought about going to see a pain clinic at your local hospital if they have one there. please read all the information contained in the tabs on the left hand side of the web site. Feel free to print out whatever you want to and take it to your Dr for them to read. Have you tried Oxygen therapy, there are alot of members that get good results from it. If you decide that you want to do it you will need a letter from your local GP stating that you suffer with Cluster headaches and it will also need to state the=at you need a flow rate of atleast 15 litres per minute.

Please feel free to ask as many questions that you may have, there will always be someone hear that should be able to answer your questions, some of us on hear have a greater knowlage in some areas like Barry (Oxygen Therapy), Matt (that's me i deal with Nerve Stimulator Implants) so there is going to be someone that should be able to answer your questions.

I hope that your next visit with the specialist has some sort of answer for you and we will be waiting to hear what he has come up with for you.

Matt
Silent Planet


Posted in Nerve Implant on 04 May, 2012 - 9:36 am

Peter,

Not sure if the body is rejecting the implants, this has never been mentioned. Last time it did this i asked about Imune Supressants to see if this would make any difference, they said that it probably isn't the body rejecting ther implant. If i did go on the Supressants that would leave me open to get all sorts of infections.

At the moment i feel good today so i am hoping that the shivers, shakes and cold sweats were just a passing thing and that there is no infection building up in the body. just have to wait to get the blood results on monday and take it from there. i am seeing the specialist next Wednesday for a check up.

The only concern that i have at the moment is that the unit hasn't been working as well as the other 2 have before they got infected. I have had the unit programmed 3 times now and will have to see how it goes after it was done on Monday. i am hoping that it isn't a faulty lead. Mind you i pulled out the remains of a stick last night and these were meant to disolve in the body, it seemed to pust it's way out throught one of the wounds. it wasn't there the other day when my wife pulled out a hair that was ingrown in the wound.

Fingers crossed that the bloods come back all clear as we are going to QLD next Thursday and don't want to have to cancel the trip.

Matt


Posted in Nerve Implant on 03 May, 2012 - 10:44 pm

Hi Heather,

I am sorry to hear the it has been postponed. Have the Dr's given you a new date as to when they will do the procedure. How are you going with everything else.

Matt


Posted in Nerve Implant on 03 May, 2012 - 2:26 pm

Hi All,

Over the last few days i have been getting cold sweats, shivers and where the battery is has become very sore. This is how the first infection started, just had some more bloods done and started on antibiotics. The results will be faxed to my speaialist on monday and i see him on wednesday. If any infection shows in the bloods then they will take the unit out again. not sure if i could go through it again for a fouth time.

So now i just have to sit and wait to see what the next step is.

Matt


Posted in Into another cluster period on 30 Apr, 2012 - 9:38 pm

Hi Annie,

Just have a few questions for you, what sort of work do you do? Are you under the care of a CH specialist? What if any abortative and preventative meds have you taken in the past? You mentioned Narcotics, what are you using, who gives it to you?

Have you been told that you need to watch out for rebound headaches from the narcotics? Have you tried slow release narcotics such as MS Contin or Oxycontin these can get you off the injectable narcotics.

There are so many meds on the market that do work with CH that you may want to talk to your Dr or Specialist about, even take a print out from the tabs on the left hand side and you might be able to caom up with something that works for you.

All the best with whatever you try.

Matt
Silent Planet


Posted in Hi I'm from the NT...new member on 30 Apr, 2012 - 9:18 pm

Hi Schultzy,

Try and read all the information that you can on the left hand side, when you see your Dr next ask about oxygen therapy. If you do get it you will need a letter from your dr stating in it that you suffer with Cluster Headaches and that you need a flow rate of 15 litres per minute. If you are getting referals for specialists get your Dr to call them while you are with them to make an appointment for you, it usually gets you in to see them a bit quicker. It might pay to print out some of the info from the tabs on the left to take to your Dr so that they can better understand this condition.

Please remember that these are not migraines as you have mentioned a few times, these Cluster Headaches are a rare condition with only 1% of the population that suffer with them.

Please remember that we are not Dr's and only pass on any information from our own experiences.

Matt
Silent Planet


Posted in Nerve Implant on 30 Apr, 2012 - 8:57 pm

Hi all,

Just an update as to what has been happening. One of the leads is not working as well as it has done in the past. Eack lead has 8 electrodes on it devided into 2 parts, 1 part of the lead is not giving as much stimulation as i would have liked. I will be having it reprogrammed tomorrow to try and sort out the problem. With any luck this will do the trick or it could be a faulty lead and it might have to be replaced (Hoping it Isn't Faulty). Got the results from bloods taked last week and all my bloods are good, no sign of any infection but will need to have bloods every fortnight for the next couple of months.

Hope everyone else is doing well.

Matt


Posted in I am off again--AGAIN--and now I am back-- on 30 Apr, 2012 - 8:48 pm

Hi Heather,

I hope all goes well with the Botox, that's the main thing at the moment to be able to control the pain, hope all goes well with the shoulder op. If you don't mind what are you having done to the shoulder?

You will be in all of our thoughts. Hope that you have a speedy recovery.

Matt


Posted in Nerve Implant on 26 Apr, 2012 - 11:43 am

Hi All,

Well im 3 weeks into the healing process of the Nerve Stimulator, so far there is no sign of any infection. There area where the battery was inserted is still very tender. You can actually see the outline of the battery in my chest.

Has some bloods done yesterday just the make sure that there is no infection building up and will continue to have bloods done every 2 weeks until im about 8 to 10 weeks after the surgery.

With this stimulator i am not getting as good a result as i have had in the past, we are just hoping that it needs time to settle down. i have it programmed twice so far and need to have it done again as 4 of the electrodes don't seem to be giving me the stimulation that i need to make it work properly.

Will keep you updated as to how everything is going.

Matt
Silent Planet


Posted in on 24 Apr, 2012 - 11:09 am

Hi Shell,

I am going to send you a PM.

Matt


Posted in Travelling with CH on 24 Apr, 2012 - 10:54 am

Hi Pete,

I traveled to England via the States a few months after 911, at the time of the holiday i was suffering prety bad with the beast. Like you i had a good supply of meds including Dihydergot and a good supply of needles. I had them in my carry on luggage, i had letters from my Dr describimg my condition and the meds that i was on. Every time i went through customs i advised them of what i was carrying on board. Customs never checked my letters or questioned the fact that i had the needles in my bag.

Make sure that with all the meds you take with you that they all have their lables in them, they don't like meds with no lables on them.

Have a good holiday.

Matt
Silent Planet


Posted in Our new home on 24 Apr, 2012 - 10:43 am

Hi Barry,

I am happy to hear that Mrs Coles and you can do something for yourselves and be happy in doing so, i hope that all goes well with the new home and make lots of new memories for yourselves.

Matt


Posted in Just diagnosed with Cluster headaches on 06 Apr, 2012 - 9:52 pm

Annette,

Hi, my name is Matt (Silent Planet) i have tried Indomethacin a very long time ago and im not sure about the side effects, firstly how old are you? Is this the only medication that you have been prescribed? The GP who diagnosed you how much do they know about Cluster Headaches? Did they give you a referal for a Neuro or a Pain Specialist? Sorry for all the questions but the more we know the better we can answer some of the questions that you will have in the future. Please feel free to read as much info as you can and even print out anything that you might think that may help your GP or Specialist understand this condition a little better.

If you go to your GP to get a referal ask if they can call and make to appointment for you as you will find that you might get in quicker if they make it for you. There is also the O2 treatment but i will let Barry our Resident O2 Specialist explain it to you better than what i can. Look forward to reading you reply.

Matt


Posted in 30th Anniversary of CH and Still going Strong! NOT HAPPY JAN! on 06 Apr, 2012 - 1:19 am

Hi Pete,

Sorry that you had to be here, but glad that you found us.

A good medication to keep on had is sumitriptan (Imigran) injections for when the pain gets too bad that you are unable to deal with it. The injections come in a pack of 2, you would need to get to Dr to prescribe it for you and make sure that you get the full injection kit. this includes the injuction gun, it quite simple once you get it loaded, Load, Aim & Fire. They are around $120 - $150 for 2 injections and can be claimed on private health fund. There are a n umber of different types of infusions that you can have as an in hospital treatment and usually need 1 to 2 weeks for these to be done. What ever youm do is try not to go down the way of Narcotics because once you start you can't stop and there is also rebound headaches. I know this as i have been down that road before.

When you do go to the Dr's to get a referal for the Neuro, get the Dr to call and make the appointment for you as you can usually get a faster appointment, there is also something that i have had done which is a Nerve stimulator Implant, which is like a pacemaker with a battery and wires run through the body up till they reach the head and this is all under the skin.

I will carry this on later as it is time for bed.

Matt
Silent Planet


Posted in Tens Machine on 03 Apr, 2012 - 8:35 pm

Hi All,

for those that are interested Aldi has a dual Channel Tens Machine on sale for $49.99. If you don't know what they are these machines are used foe helping people with Migraines but they are also used for Cluster Headaches they don't work for everyone but there have been some good resultes with people who suffer with Cluster Headaches. For $49.99 its worth spending the money to give it ago. It is sort of similar to what i have had done but this one is the cheper version.

I would give it ago and if it doesn't take it back within the 30 days that you have for a refund

Matt
Silent Planet


Posted in Ride for Awareness on 03 Apr, 2012 - 1:39 pm

Hi All,

I am still keen to get this up and running, i woiuld love to do a good ride from Sydney to where ever we decide to go. After i the all clear then i will start getting right into this and making some calls

I would like to see the beast get some sort of recognition with the general public, even though this is not a life threatening condition i think that it drives some people to think about ending it all, nbelieve me i have thought about it before but i aleays think about my family and what it would do to them. So lets get as much support from all the members on the site and take it from there.

Matt


Posted in just for the sake of talking on 03 Apr, 2012 - 1:20 pm

Hi All,

Im back, the surgery went well as Sarah said the decided to put the implant in my chest under the skin but not in the chest muscle. So far all is going well just waiting to have the implant programmed which should be done on Wednesday so i can start using it.

All is very sore at the moment but that should all settle down in a week or so. My Pain Specialist is seeing me in 2 weeks to see how it is all going.

Thank you all for your support throughout the last year bsince first having the implaqnt done.

Matt
Silent Planet


Posted in just for the sake of talking on 30 Mar, 2012 - 7:15 pm

Hi All

Sarah here! I have hacked his account to give you an update icon

I spoke with Matt about an hour ago, he's still really groggy so he's gone back to sleep. He's also in a bit of pain, but as I told him, better this pain than the normal pain!

His surgery was booked for 8am although I'm not sure what time he ended up going in. His specialist and the neuro surgeon changed the plan once he was under as they decided it was best not to open up any of the old wounds to be on the safe side. So instead of putting the implant in his bum cheek and running the leads up his back into the neck and forehead, they have put the implant on the right side of his chest and run the leads up his neck. They are hoping that this will improve the chances of him not getting an infection.

The neuro surgeon has told him that he will probably be allowed out on Sunday as long as his specialist agrees. I'm sure he'll be jumping on here to let you all know when he's out.

Bye for now

Sarah


Posted in just for the sake of talking on 29 Mar, 2012 - 9:27 pm

hi all,

there are 10 hours until i go under the knife as a guinee pig for the good of science, i scarafice everything to have this surgery done.

if only all of that was true, hahahahaha.

seriously 10 hours and counting, everything should go to plan and recoverey will be easy as long as i do everything that the Dr's tell me to do. not to say i didnt do everything that i was told to do the last 2 attempts at this.

will see you all on the otherside of the surgery.

heather, if you speak to Ben tell him HELLO from me.


Matt

Silent Planet


Posted in just for the sake of talking on 28 Mar, 2012 - 12:28 pm

Sara,

2 days to go and i got the all clear from the Specialits for the surgery to go ahead. It will nice to be able to go out once it is over, i've been wrapped up in cotton wool over tha past week. Not letting anyone near me if they have a cold or the flu cause if i got it they would cancel the surgery on me and i dont wnat to have to wait longer for sometime in the Neuro Theatres as we had enough trouble getting the 4 hours that they have booked for me now.

The procedure usually about 1.5 hours but the Neuro surgen will be taking about 3 hours to do it this time.

Matt


Posted in just for the sake of talking on 21 Mar, 2012 - 2:53 pm

Sara,

we should get together for a coffee when you come over.

Matt


Posted in Nerve Implant on 21 Mar, 2012 - 2:52 pm

Elle,

The nerve stimulator implant is self explanatory. There is a batteray that is put under the skin then they run 2 wires up along the thorasic spine, then they run the 1st wire on top of the Ocsipital nerve and then the other tracks behind your ear around to your forehead to the Tirgeminal nerve. All of this is run under the skin.

When you turn it on there is a tingling sensation which is quite plesant and doesnt interfear with your normal daily routine, the device works well when it is in. So far i have had 2 implants in and both of then got infected. This time around we have a full team of specialists involved Neuro Surgon, Pain Team, Dermatoligist, Psyciatrist, Psycologist & Infectious Diseases Team.

I hope that this answers all your questions.

Matt
Silent Planet


Posted in just for the sake of talking on 20 Mar, 2012 - 9:34 am

Sara,

We are planning on going over between August - October at the moment, we were planning to try and go for our daughters birthdays in September but we have to be here as our eldest is in the school choir and they are singing at the Opera House around that time. everytime we choose a date to go somrthing always comes up.

Matt


Posted in just for the sake of talking on 19 Mar, 2012 - 10:31 pm

Hi All,
For the past 12 months we have all had a real shit time in some form or another, my wife and i decided to treat ourselves to a few new things, today we went and test drove a couple of new cars. I was looking at a Jeep Patriot or Compass and Sarah was looking at a Kia Sportage or a Cerato. I took both of them for a test drive today and liked the Sportage. While in the store i saw a Optima and it was the top of the range. I must say for a Kia these 3 cars were very nice, out of the 3 i am leaning towards the Optima and the Sportage. The sales rep worked out a good deal for both of them, so i will be calling them in a week and placing my order with all the extra options that i have asked for.

Now that the cars are done it's time to book our holiday, we will be going to the states for a few weeks doing the west coast, iv'e only done transit there havent been out of the airports so it will be nice to actually get out and see some of the USA. It's a pitty that my son will not be able to join us on the trip. We have been looking forward to a good holiday over the last couple of years and this might just be the one. We will also do a smaller holiday within Australia so my son can join us.

There are still a few other things that Sarah and i want to do but at the moment i cant do anything that will screw any chance of having the surgery done. My specialist has me wrapped up in cotton wool until the 30th of the month. He has me on pills, body washes creams and ointments, he doesnt want me to even get the smallest cut on my skin where there is a risk of any infection.

I will be so glad when this is all over.

Matt
Silent Planet


Posted in My Story - A Good News Story on 17 Mar, 2012 - 4:12 pm

Hi,

just read the artical and now printing it out for my pain management team.

Matt


Posted in Will it get worse? on 17 Mar, 2012 - 3:54 pm

Loagz,

As far as i am aware there are no bad interaction with the Veracaps and Imigran. Veracaps are used quite frequantle for the treatment of CH, can i ask why you have seen 2 different Dr's and now getting 2 different outcomes. You need to try and stick with the same Dr so not to get overdosed on pills as they all dont know what you are on. As heather read up on all the information on the left hand side, print it out and take it to the Dr, ask about trying the O2 treatment there is plenty of info on the side about that. Any questions you might have Barry is the man to ask.

Get your Dr to call and make an appointment for you with a Neuro or to a Pain Clinic you will find that you may get in quicker than if you did it yourself. And please remember that we are not MEDICO'S see the disclaimer below, this is just advise on might or might not have worked on us.

Matt
Silent Planet


Posted in Nerve Implant on 17 Mar, 2012 - 3:40 pm

Hi All,

Well we are well into the countdown for the surgery, they have started me on some antibiotics over the next 2 weeks and some creams and a body wash twice a day to try and get the body ready for the surgery.

Will keep all updated.

Matt
Silent Planet


Posted in still here... on 17 Mar, 2012 - 3:37 pm

Hi Love Peace,

It is good that you are still in the green, use the time wisely. Dont think about what might happen as you will only stress yourself out even more and then you will surely bring the beast back. As Sara said use your time to cook some meals and freeze them.

Please dont shy away from the site when you are in the green, we need to remember that there will always be someone else suffering going through what you have been through while in the red. Even if you dont have something to say every day there is always someone who can use some encouragement while they are suffering.

I dont mean to harp but i had a conversation with someone once about some of the members staying away when they are in the green ans coming back when in the red, as i said there is always going to be someone suffering and could do with a few kind words.

Matt
Silent Planet


Posted in Ultimate Price on 09 Mar, 2012 - 3:02 pm

Hi all,

I am happy to say at the moment we are trying to work things out, Sarah has said that she will be around for my surgery, I lost my mother last Thursday and she has been a tower of strength with her passing.

I would also like to thatk my kids for the strength that they have shown in this hard time.

Matt
Silent Planet


Posted in Second Opinion on 28 Feb, 2012 - 9:57 pm

Hi Red,

Sorry that you have to be here, as Sara said read all the info you can and even take some of it with you when you next see your G.P. You might want to ask and see if they will give you a letter for you to get some O2 and give that a try. If you do get a letter it needs to say that you suffer with Cluster headaches and need a flow rate of 10 - 15 Ltr/Per Min.

You might want to check out your local hospital and see if they have a Pain Management Clinic there, if they do get your G.P to call and make an appointment for you while you are there as you can usually get in a bit quicker if your G.P calls and does it for you, same with a referal to see a Neurologist.

There are so many different types of Preventative and Abortive meds on the market. Please don't be affraid to ask questions as we won't bite but are here to help you in any way we can. Please remember that we are not Dr's and only offer this info from our own experiences and that before you try anything always consult with your G.P or specialist.

Good luck with all your research on this site.

Matt
Silent Planet


Posted in Back to Red on 27 Feb, 2012 - 10:46 pm

Hi Sara,

Sorry to hear you are back in the red, as peter said i hope that it a short bout and they quickly disappear for you.

Matt


Posted in Nerve Implant on 18 Feb, 2012 - 11:34 am

Hi All,

Well my Pain Specialist and Neuro Surgen have put their heads together and have come up with a date for my next Implant Surgery. It is set for the 30th March, now all we have to do is get the Infectious Diseases team to work out a course of Antibiotics for me to go on to before the surgery to try and clear up a skin condition i have and also keep my CRP blood levels down at a normal range.

Matt


Posted in Energy Drinks Oxygen & others on 14 Feb, 2012 - 9:54 pm

Hi Katherine,

When you go to see your local GP, ask if you can get a letter stating you have CH and that you need O2, in the letter the GP should state the following in the letter.
1. You suffer with CH
2. You need a flow rate of at least 15L/Per minute
3. You need a "Rebreather" mask.

With any specialist appoints that you need to make get your GP to call them while you are in the room and make tha appoint for you as you will find you can usually get a quicker appoint than if you did it yourself.

Good Luck

Matt
Silent Planet


Posted in newb to the forum on 14 Feb, 2012 - 9:43 pm

Deano,

Glad to see that you have found us and YES there are quite a few of us that suffer this dreaded affliction. Please feel free to print out any information you feel could benefit your local GP. We are always here to to help out in any way we can. If you get time have a look at a thread called Ride for Awareness and see if you are able to help out in any way.

Please remember that we are not Dr's and the information that we pass on should still be checked with your local GP. We also have a live chat room where we can go on and talk about anything with the exception of our CH's.

Matt
Silent Planet


Posted in Ultimate Price on 13 Feb, 2012 - 2:57 pm

Kim and Heather,

Thank you for your kind words, at the moment i am hopefull that we will get back together sometime in the future. Things are very hard at the moment but as you have said i have my girls and the support of my wife. I am in a dark place at the moment and wish i could pull myself out of it, It is not helping my head at the moment. I have increased most of my meds to levels that a normal person would never be able to handle and still they have not much effect on me. I sometimes wonder if my family would be better off without me, if I left and delt with the beast on my own as so not to drag my family through the crap that we put up with all the time. I know that my wife sufferes just as much as i do and it's not fair on them to have to go through this crap with me all the time.

Will keep you all updated as to what happens next in this life long saga that we deal with and call our life.

Matt


Posted in All Your Details on 11 Feb, 2012 - 10:20 pm

Hi All,

Iv'e been noticing when I look at all the new members details after they sign up and alot of the old members that no one ever fills in all their details or has a blurb about themselves. that's the first thing i do when i write to all the new members that sign up. It would be nice to see if everybody could just take a few minutes of their time to fill in the information on that page.

How else are you ever going to know if there is anybody that lives close to you. i have only ever seen one person that lives within 5 km's of myself.

Matt
Silent Planet


Posted in Ultimate Price on 10 Feb, 2012 - 8:24 am

Hi All,

I think I have paid the ultimate price for a CH Sufferer, after 10 years with my wife she has decided that we need to Seperate. I am hoping that after the next surgery things will get back to normal and we can sort everything out. The good thing is that our 2 girls are staying with me. My eldest who is 9 has been helping with the injections, she is able to push the plunger down for me. Now all i need to do is get her to put the actual needle into my butt. I can do it in my bottom but it is quite difficult and my arms have too much scar tissue from using them all the time. I need to get he to use my BUTT for them now.

My wife said that she will still come to my appointments and take me to hospital when i go in but unfortunately she will be staying at least 30 mins away. The CH's weren't the only reason for the split but it is the main contributing factor. I can understand where she is coming from, it's not easy for anybody who is the supporter of a CH patient but it was something that i was not expecting. We will try to work it out but with my surgery coming up some time soon i need to be stress free so as not to become ill in some way because they will not do the surgery and i will have to wait even longer.

I can't keep up with the high doses of Opiates that i am on and when i do stop the withdrawal is going to be hell as i have done it before, i will keep you informed as to what is going on.

Matt
Silent Planet


Posted in Ergotamine on 06 Feb, 2012 - 4:00 pm

Rich,

I was on Deseril a long time ago @ 6mg/per day, you are only allowed to stay on it for a max period on 5 months and then you have a break of around 2 - 3 weeks and then back on it again. You have to make sure that you get bloods done at regular intervals to check liver function. As long as all is ok you can start back on the Deseril.

Matt
Silent Planet


Posted in Untitled on 05 Feb, 2012 - 11:59 pm

Hi All

I have had one done also it was called a Spheno Paletine Gangleon Nerve Block, there was 2 places where they did the block one in the Trigeminal Nerve at the fron on your Forhead. If you feel around youe eye socket near the nose you should find a little divet that is where the Trigeminal nerve is, the other went in through the side of my jaw to an area just above the pallet inside your head. They used a bloody big needle to get inside the head and it hurt like hell when they did it. I got 12 monthe free the first time they did it, the 2nd time they tried they were not successful and it thing that it made the headaches worse.

Please do not be affriad to have it done if it is offered to you everybody has different reactions to this proceedure as i said i got 12 months pain free so it does work, unfortunately we done know how long the nerve will be turned off for.

Matt


Posted in Nines ACA on 05 Feb, 2012 - 11:38 pm

Hi All,

I know that some people are a bit cynical about the current affairs programes but i have just speant the last 30 mins doing an email to The Project and more specific Dr Rochford who is the resident medico on the show. Maybe we might get somewhere with these guys. I hope that if they do get in contact i would like Roger to have a chat with them as well as he is the Founder on this site that we all cherish with our lives because without this site we would all be sitting in our homes banging our heads against the wall wondwering what can i do next to try and beat the Demon.

Matt


Posted in Untitled on 05 Feb, 2012 - 10:38 pm

Hi All,

Just a quick note if you find a GP or a Specialist that knows about CH and is willing to take on new patients you should put their name in the lists of Medico's that we have on the Left Hand Side where to Dr's are listed for all to view.

Matt
Silent Planet


Posted in Imigran overdose? on 05 Feb, 2012 - 3:21 pm

Hi Al,

Sorry to hear about your partner, firstly you must get the correct diagnosis. If you can find a GP that has some knowlage about CH try and get them to refer you to a Neurologist or a Pian maqnagement Clinic at your local hospital. There are many forms of preventative medications available, if you can get sorted on the preventative front then the next step will be to get some abortative medication under way. If you do go the way of the O2 then you need to get a letter from your GP stating that you need it for Clusterheadaches and that you require a flow rate of 15 L/Per Min to be effective

Make sure you take some of the information with you, i know that there is alot of info on the site but if you print out the important stuff and take it with you to the GP.

I hope that you get some sort of diagnosis as soon as possible so that you know were to go next with the treatment side of things.

Matt
Silent Planet


Posted in Occipital Nerve Stimulation on 03 Feb, 2012 - 11:27 am

Hi All,

I went and saw the Neuro Surgon yeasterday and he is on board with doint the next round of surgery for my implant, he will get in contact with my pain specialist to try and arrange a time for the surgery. We now need to get the Infectioius Disease team to sort out a skin condition i have to see if we can clear it up for the surgery.

I will keep everyone informed as to what is happening.

Matt


Posted in Ride for Awareness on 03 Feb, 2012 - 11:17 am

Hi all,

As i have said before i am fully behind this, i am prepared to do the ride and try and get some sort of sponsership going. As i have said in earlier posts and topics i would like to get the T.V involved with getting our condition out there for all to know about and understand it better.

Matt


Posted in Energy Drinks Oxygen & others on 30 Jan, 2012 - 12:56 pm

Peter,

I've been saying this for quite some time now, we need a study done on our condition where all the information that we have and what our Dr's have. I woulld have no hesitation in saying that my medical history be examined by someone doing a study on us. Hense the reason i have been saying do the ride, get on a news or current affairs program so we can have a voice out there for us. I know some people have been a bit sceptical of current affairs programs but if we can have the final say on how it is edited that it shouls be ok.

Matt


Posted in Energy Drinks Oxygen & others on 30 Jan, 2012 - 5:52 am

Hi All,

I have tried Monster drinks at the onset of the daily pain starting to increase in combination with coffee and had some relief not sure whick one helped. I do know that if i have a coffee i do sometimes get some relief, so now i have a pot of coffee on at all times so I don't have to boil the kettle to get a coffee. I have had some relirf from the coffee being on hane all the time but i will need to get some more energy dirnks to keep at home so i can do the Monster on it's own.

Matt


Posted in How is everyone going? on 30 Jan, 2012 - 5:29 am

Hi Tara,

I'm glad to see that you are still in the green and i hope that you stay that way for the rest of the year.

Rich,

Sorry to hear that you CH's have taken a turn for the worse, may you get relief soon. It looks like you need to carry some abortive Meds with you when you go out all the time. When i go out i always take meds to help me, so i don't have to leave where i am. I hate leaving something when you have paid to get in and you are with the kids. The last thing i want to say to the kids is that we have to go because dad's head is hurting.

Matt


Posted in Nines ACA on 26 Jan, 2012 - 11:52 pm

Hi all,

I have just speant the last 2 hours writing a very long story to Channel Nine's ACA asking for help in getting CH out in the public's view. I have invited them to do a story on all of us and our Ride for Awareness and maybe setting up a Not for Profit Foundation. I have invited them to take a look at the web site so that they can maybe get a better understanding of our horrible condition.

So on the off chance they do get back to me who wants to get their head on the T.V and better explain what we go through. Have you ever heard the saying "i have a head for radio" well that's me. So feel free to put your hand up, Roger i think it only fitting that you put your hand up as you run the site anyone else want to have a say just let me know.

Matt


Posted in CH in the ACT on 26 Jan, 2012 - 12:39 pm

Peter,

Don't lie we are all cynical in some way or another, we have to be other wise we would never survive this dreaded condition that we all suffer with. But on the other hand we are also the nicest people to deal with as we understand what each other is going through unlike the general public who have no idea and just think that it's just another headache.

Matt


Posted in I'm new here on 26 Jan, 2012 - 12:35 pm

Hi Dave and Andre,

When you go to see your local G.P or Specialist (Neuro or Pain Management Team) dont be affraid to ask questions, take some of the info from the tabs on the left hand side. If you are going to try O2 make sure that you have a letter from Dr stating why you need it and a flow rate of at least 10 - 15 L/Per Min. Imigrin comes in 4 forms Tabs, Fast acting Tabs, Nasal Spray & Injectable (Quite Expencive) there are also Maxalt Waffers which are fairly new on the market.

Good luck with your visits to you G.P's. Just make sure taht you read all the information that ou can so you are prepared for when you next see G.P or Specialist.

Matt
Silent Planet


Posted in CH in the ACT on 24 Jan, 2012 - 12:52 pm

Andre,

I am glad that you have found this site, i'm not sure if we have any Dr's from the ACT in our list of Dr's that know what the are doing. could you put his details in then section where we list specialists that know what they are doing. Dont be afraid to ask any questions someone will have some sort of answer for you and if we don't our entrusted reaserch man (Ben) can usually find something on the web for you.

Please take advantage of all the info in the tabs on the left hand site and take it to your G.P to read through.

Matt
Silent Planet


Posted in Putting It Out There on 20 Jan, 2012 - 3:50 pm

Hi All,

I was just reading some information that O.U.C.H UK have on the Facebook page, has anyone ever thought about participating in research and communicating with the medical and pharmaceutical communities with the goal of improving diagnosis and treatment of cluster headaches.

Maybe it's someting we could or should think about, instead of us waithin around for someone to come up with a new medication we should be offering our services to try and come up with something new.

Maybe if we all choose a medication that we are on and we get a group letter together and we send it to their Research and Development people and see what happens. I don't know about anyone else on here but when was the last time you were asked to help out with any sort of research for Clutser Headaches or any sort of Headache condition. I know for me i have only done one survey in the last 15 years or so.

Just a thought after reading about O.U.C.H.

Matt


Posted in Poets Day on 20 Jan, 2012 - 1:16 pm

Hi All,
just a little quirky post with no meaning at all.

Poets Day

Piss
Off
Early
Tomorrow's
Saturday

Had all my chores done my midday, eldest daughter at a friends and youngest is happy playing in her room. Time for a nanna nap.

smile smile

Bye

Matt


Posted in Passed my use by date. on 20 Jan, 2012 - 1:05 pm

Hi Ben,

Let me say that if it wasn't for you most of us would still be uneducated on this condition. With all the searching on the net that you do you could open up your own medical practice and specialize in CH only.

The guy that programmes my stimulator said that i should get a job with the company he works for due to the fact that i have the implant in and can sell the product easier than they can.

I would hate to see you leave the site and i know that there would be a big whole left in the site.

Matt


Posted in Book anyone? on 19 Jan, 2012 - 11:17 am

Ben,

Is this book avai;able to the general public to purchase? If so do you know how to get it?

Good to see you online again.

Matt
Silent Planet


Posted in Steroids on 18 Jan, 2012 - 8:09 am

Hi All,

I was always given Pred at 100mg/per day to stop the cycle and then tapered off very slowly, i was on it for extended times for 2 - 3 months at a time. The crappy thing about it was that you retained alot of fluid in your body. When i first used it i went from around 65kg to 90kg in a very short amount of time and found it very hard to shed the extra weight. Before i started on the Pred i was given an injection of steroids to give me an advantage of it starting sooner with the Tablets.

My advise would be to try and stay off it if you can, in saying that if your Dr says you need it then you will have to atleast try it. Remember i am not in the medical proffesion and this is only my opinion.

Matt


Posted in Passed my use by date. on 18 Jan, 2012 - 7:54 am

Ben,

You are a valuable part of this little Community and it would be a shame to see you go. With all the information that you have posted, most of us still wouldn't know half as much as we do now due to all the time that you have taken to find out everything that you have. I don't think that there is anyone on the site that would or could fill your shoes. Most people would be lost without everything that you have done.

If you need to take a break take one but i would hate to see you go from this site. Being "Past Your Used By Date" means only one thing to me and that is that you would like to end it. I know that you are not that kind of person, so please take a break from getting all the info that you get. Just sit back and take it easy but please stay in touch with us so that we know that you are still around.

Matt


Posted in The Larrikin Laureate on 17 Jan, 2012 - 3:36 pm

I have spoken with Aussie Brian before, this is a masterfull piece of work. He should get it published in some sort of pain medical journal, i think that the Dr's would get a kick out of this.

Matt


Posted in Welcome to ther new members on 15 Jan, 2012 - 8:58 pm

Hi to all the new members,

Over the last few days i have noticed that we are getting new members every day, while Heather (Dusker) is away i have been trying to welcome all the new members to the site as Heather would do.

It is good to see that you have found us but on the other hand I am sorry that you have to be here. Please dont hesitate to ask any questions that you may have. There are a number of us on here who have there little areas of expertise like Ben who is the info man if you want to know about something Ben can find id for you, Barry is the O2 man & i am the man for the Nerve Stimulator Man.

Please remember that we are not Medical Proffesionals and all ways consult with your Dr or Specialist before changing any meds that you might be on.

Matt
Silent Planet


Posted in Untitled on 10 Jan, 2012 - 4:05 pm

Ben and Kim,

I don't have a prognosis at the moment all I have is the hope that I will be able to have another implant, as I have said before the implant is not a cure but another way to try and treat the pain. I have suffered since i was 8 years old now 45, I was always told that i would grow out of them well i'm still waiting to grow out of them. I have never had any sort of prognosis from any of my Dr's all they have ever told me is that we can try and treat the pain but that we will not be able to cure it in my life time.

The reason that they will never find a cure for CH's is because there are never any studies done for CH specifically, there are always studies into migraines and other sortd of head pain but not for CH's. I have even written the the Minister for Health (Federal) and asked about funding for studies into the condition and she never really answered my question about studies, she answered another question regarding medications on the PBS and gave me a fobb story about how they have no control over the priced of medication. I have gone a little of track.

So i have never had a progmosis just always told that we can try this and we can try that and see what works so i guess that is my prognosis (Lets Wait And See What Happens)

Good Health To Everyone.

Matt


Posted in Untitled on 09 Jan, 2012 - 10:11 pm

Sheree,

I am glad to see that you have found us. You will find that everyone on the site is very helpfull and quite knowlagable on the subject of CH, you will find that usually we know more that what the Dr's know. Depending on where you live you should try ans get an O2 bottle for home, you can order them through BOC gasses 1800 050 999 you will need a letter from you Dr and it needs to state that you suffer Cluster Headaches and you need a flow rate of 15L/Per minute give them a call on the toll free number.

You will see that there is a link for the live chat site that we have set up for members and supporters, this section is only for every day chat and not posting questions that may benefit others on the site. I hope that you get alot out of this site and get to meet new people from all over Australia and even some from other countries.

Please feel free to ask whatever question you might have and we will try to answer as best we can.

Matt
Silent Planet


Posted in Ride for Awareness on 07 Jan, 2012 - 1:48 pm

Hi All,

I am still looking for anyone else that is able to help and try and get this up and running, any of the new members are welome to join in, as i have said in my PM's to all the new members you are all welome to join us.

I am going to draft some letters up during the week about getting some coorperate sponcership and going to try and get one of the airlines on board with free flights to Syd for all those who are interstate and wish to join us in the ride or in the support cars.

Matt


Posted in Beware Mushroom hunters - Death caps put three in hospital on 04 Jan, 2012 - 3:49 pm

Hi All,

I would have to agree with the last paragraph of Ben's post. I to would hate to see anyone end up in hospital or the morgue due to the fact that you have eaten to wrong mushrooms. The last thing you want t do is add the stress of a charge of collecting mushrooms as well as dealing with CH.

I thing that we as a collective group would hate to see anything happen to one of us due to the fact that you have done something illeagle in an attempt to try and get some relief from this dreadful condition that we all suffer with. Even though i am on high doses of narcotics, I wouldn't do anything illeagle to try and help with the pain. When and if they ever make a pain med from the mushrooms, i will not be one of those who tries the mushrooms in the hope of getting some relief.

I might sound like a bit of a prude, but i don't believe in breaking the law to try and get some relief fron this condition. I know i might cope a bit of a ribbing over this but this is how i feel and where i stand and everyone is entitled to thier own opinion.

Matt
Silent Planet


Posted in Untitled on 03 Jan, 2012 - 9:40 pm

Les,

As you might be aware we are trying to get a Ride For Awareness up and running, we are in the very early stages just trying to see how many people we can get interested. Once we know how many people we can get involved we will then try and start to track down sponcers and supporters. So if you know anyone that can help out in any we please let me know.

I might even set up an email account for people who are going to get on board with this.

Matt


Posted in Pulling out for a while on 02 Jan, 2012 - 3:44 pm

Heather,

I wish you all the best for the next month, with any luck your 1-2 attacks a day might just go away after being in the air for your trip to France. i hope that when you come back we will see you in the green and not the red.

Your kind words will be missed for the next month, you go and enjoy yourself in France and enjoy the time that you spend with your grand children.

Happy birthday for while you are away, you might even be able to risk 1 glass of Champers for your birthday. As you saud nothing will stand in your way while you are away. Just go prepared with everything that you need incase of an attack.

Have fun and we will see you on your return.

Matt


Posted in Untitled on 28 Dec, 2011 - 6:02 pm

Wayne,

This is a little bit off track, can you take a look at a topic "Ride For Awareness" that we are trying to get up and running.

Matt


Posted in Untitled on 27 Dec, 2011 - 3:03 pm

Sara,

Sorry to hear about your son, i hope he is on the mend and won't in hospital for too long. Here is hoping that you stay in the green for 2012.

Matt


Posted in Untitled on 27 Dec, 2011 - 12:13 pm

You Go Heather, Enjoy your day of R & R. Go Spoil Yourself. Matt


Posted in Untitled on 27 Dec, 2011 - 10:40 am

Hi all,

Just wondering how everybodies Xmas & Boxing days went, I had a shocker on Xmas Day was in pain most of the day with it peaking to a nice 9/10 in the late afternoon. Boxing dat was better, i thought i might risk it by having a drink or 2. Had 2 Bourbon & cokes and only had Shadowing most of the day with it peaking to around 6/10 which is like stubbing my toe pain for a short time the you forget about it but you know in the back of your mind that this cant be all I'm going to suffer for the day, thankfuly I dont listen to the back of my mind and only go on what's happening to me at the moment.

Matt
Silent Planet


Posted in Untitled on 26 Dec, 2011 - 7:34 pm

Hi Wayne,

I have done the Verapamil line of CH Blockers i got up as high as 960mg/per day and never suffered any ill effects my BP stayed at 120/80 and stayed that way at what ever dosage i was on. My GP's faild to monitor my heart while on any dosage unless i was in hospital for any reason.

But as you said the best thing that you can do i keep your Dr on any side effects if anything that feels different keep a diary of anything and anything that you suffer or is different from the norm for you.

You mentioned that you were going to try Oxygen make sure you use a rebreather mask and that you have a flow rate of 15L/per min. If you don't have a mask you should be able to get one from a hospital or a chemist might have them as well.

Good luck with everything that is going on but if you get a chance can you take a look at the topic called Ride For Awearness that we are trying to up and running or join us in the Live Chat Room this is where we try and talk about anything that isn't CH related.

Just remember we will be pain free one day.

Matt
Silent Planet


Posted in Untitled on 24 Dec, 2011 - 7:40 pm

Hi All,

just a quick note on Public V's Private, with all the surgeries i have had i go into the public system as a private patient all it means is that the hospital gets more money back for the procedures i have had done this year. I have been sent statements from the private fund and just with all the procedures i have had over the last 2 years have cost around 200K just for the implants they have been 33K each. So there there are benifits in haveing private cover, i think Ben that is why i have not had to wait to get the implants done.

That just my opinion.

Matt


Posted in Untitled on 22 Dec, 2011 - 3:22 pm

Roger,

That sounds like a good idea,
the Japanese style sounds really nice. I hope that you have a nice Xmas and New Year.

Matt


Posted in new medication found on 22 Dec, 2011 - 9:56 am

Trevor,

In regards to calling to discuss ideas ( Thats why we have the forums) for all new ieads so we can all jump in with our opinions. We also now have the live chat room now so we can all get on just to have a chat, we have made one rull that is not to discuss any and all new meds or treatments. We do this so we can all have a chat or a vent.

Matt
Silent Planet


Posted in Supporters tips on 21 Dec, 2011 - 7:46 pm

Cheryl and Brad,

You mentioned that Brad has worked for 2 out of 4 years, did you know that you can apply to Centrelink for a Disability Pension as CH is now a recognized condition for a disability. The pension is means tested so they will take into account what ever you earn Cheryl. You will need to give them letters from your GP and your Specialist.

Good luck with what ever you decide to do.

Matt
Silent Planet


Posted in Untitled on 21 Dec, 2011 - 2:14 pm

Hi all,

Thought that I might start a thread about what we all have over the Xmas & New Year's break.

My Family and I will be spending Xmas morninkg with the Inlaws for Xmsa Breaky then the rest of the day at home as on Boxing Day will collect my son for a visit and then we will be going next door to the Inlaws for our traditional Boxing Day BBQ with about 30 - 40 family and relos coming over for the day. New Years Eve will be at home with the kids and watch it on T.V.

Matt
Silent Planet


Posted in Supporters Means? on 21 Dec, 2011 - 9:41 am

Penelope,

With what you have just told us i think that you would be a true supporter, i think that it would be hard to try and explain to her friends what she is going through. So being able to contact her mother and to have you drop everything and go to her is a true testament of the word supporter. I would just say to keep on doing what you do for your daughter.

Matt


Posted in new medication found on 20 Dec, 2011 - 8:52 pm

Ben and Trevor,

I used to go as high as 960mg/per day with out regular ECG's my Blood Pressure stayed on 120/80 all the time. No matter what the dosage my BP never changed, I have had CH's for 37 years and didn't get diagnosed till i was around 25 then i tried every drug that was out there and i had every test there was to be had whitch didnt show anything but the fact that yes indeed i do have a brain and that there is nothing wrong with it.

Matt


Posted in Untitled on 20 Dec, 2011 - 1:47 pm

Heather,

I think that you have to way the cost up over how bad you really need this. I have been lucky my private health fund has covered all my inplants, i received an letter from the HCF telling me what they have paid for the implants. Each implant has cost just over $33000.00 this is for the device only and i've had 2 now and getting ready for the third so in total it would have cost around $100000.oo not including the hospital and all the surgens and all the upcoming specialists and the trial implants.

All I can say is thank god for Health Funds iconiconiconiconiconiconiconicon

Matt


Posted in Supporters tips on 20 Dec, 2011 - 12:55 pm

Cheryl,

please for your's and Brad's sake please lookup your proceedure and find out what it is all about, you don't want to go into a proceedure not knowing what is going to happen.

I saw the Prof once but i didn't like him, i thought he was rude. You are right my wifr should join up and share her experiance with dealing with me.

Matt


Posted in Supporters tips on 20 Dec, 2011 - 9:56 am

Cheryl and Brad,

Do you know the name of the nerve block that they will be doing, not too long until the new Bub is due so good luck with that. I wish that my wife would get on this site In the supporters section so we can get this section used more actively. As we know the supporters also suffer as much as we do, just in a different way.

Matt


Posted in Untitled on 20 Dec, 2011 - 8:25 am

Heather,

As i said before when i got the Botox in the forehead i didn't have to pay for the Botox just for the consultation with the Pain Specialist. I'm sure that if you explained your situation to the Specialist Thet might except the Medicare and Health Fund Rebates. It's worth a try.

Good Luck Heather.

Matt


Posted in Untitled on 20 Dec, 2011 - 7:55 am

Lazy,

Good to hear from someone else that has had the botox treatment and also Lidnocaine Infusion. I have also had the Lidnocaine and the frist time i used it I got 12 months pain free. The 2nd time I used it I only got about one week pain free.

The Isoptin and Epilim I have used both the Isoptin i pushed right 960mg/per day, The Epilim I ended up the shakes really bad and had to come off it.

Matt


Posted in Ride for Awareness on 20 Dec, 2011 - 7:29 am

Penelope,

I am glad to see that the email that Roger has sent is getting through to people like your self that haven't been on the site for a long time, i hope that more people like yourself read it and respond to it.

What you said about smaller rides is a good idea for each state to be involved and for people to meet each other but like i said i would to try and get an airline involved (just hope they dont cloes it down for a few days) Prob good to get Virgin Airlines involved as Richard Bransen is good to Charities from what i can gather.

If you have any good contacts in any industry that wuold support this bike ride that would be good.

Matt


Posted in Ride for Awareness on 19 Dec, 2011 - 11:07 pm

Hi All,

It is great to see that there are a few more people having a say on this topic. For those that live in different states i would like to contact one of the airlines like Virgin and see if they would donate the flights so anyone who wants to partisipate in this flights woulf be provided for those who want to attend.

At the moment we are in the very early stages of this, the most important thing at the moment is to see how many people would be interested in this event, the more that we can get the easier it will be with delegating different jobs for those willing to help with the organization of the event.

As i have said I am willing to get alot of the ground work done if I can, I have never done anything like this before but I am willing to give it a go. I have made a few contacts and will arrange to have meetings with these people and see what info i can get.

I look forward to getting some more positive feedback from the member of CH Aust.

Matt
Silent Planet


Posted in new medication found on 19 Dec, 2011 - 10:42 pm

Hi Headbanger,

Sorry to tell you this but Isoptin has been around for quite some time. I used to use doses like 960mg/per day. As you said it moy or moy not work but it is worth giving it a go.

Matt


Posted in Ride for Awareness on 19 Dec, 2011 - 11:13 am

Ben and Heather,

They are all very good ideas, i will print out a few of the posters and take them to my G.P and also to the coffee shop where i get my coffee from.

We will also need a Dr on boeard with us and one who is willing to come with us and be willing to continue with our normal way mwe treat our pain.

Ben, i know you said that you are not able to ride with us but what about travelling in the support cars. I have also PMed Roger about sending out a group email to oeveryone directing them to this link, we need everyone on this site to at least have a look at this thread. I don't want to herp on this but a great deal of members on this site dont check in when they are not suffering which i thing is a bit wrong. I don't want to DOG anyone but everyone needs to look in every now and then to offer some support when the are noy suffering.

Lets just hope we can get something up and running early in the new year, I would like to do the bike ride in late spring.

My best to everyone for Xmas and the New Year

Matt
Silent Planet


Posted in Ride for Awareness on 19 Dec, 2011 - 8:15 am

Hi All,

I was talking to a neighbour of mine and he was telling me that his sister does this sort of thing like the rides for awareness, he is going to hook me up with her so we can have a chat. He also said that after me telling him about our condition he was willing to jump on board as a rider or a sponser.

We had our street Xmas Party yesterday and i was the most talked about topic at the party, one of my neighbours makes it a point to introduce me to some of the new neighbours and then proceedes to tell them about my condition and all the surgery i have had, so in fact he is making the condition more aware to the people in my street.

So what im trying to say is that if a new neighbour in my street is willing to jump on board with us (I only met him yesterday for the first time), i can't see any reason baring serious medical or age, why most of us shouldn't be on board with this. The ride is trying to raise awareness for a condition we all suffer with. So we all need to get on board with this so we can raise awareness for a condition we all suffer with. It doesn't matter what position you think that you may be able to help out with, we need riders, organizers, support staff and drivers we need your help if we are going to get this up and running.

Matt


Posted in Inverting the head, a.k.a. The vampire bat treatment on 17 Dec, 2011 - 6:07 pm

Hi Brenden,

the only time that i have heard about turning up side down is if you are using Imagrin Nasal Spray. The spray gets into the blood vessels alot easier and the spray works better.

Matt


Posted in Supporters tips on 17 Dec, 2011 - 6:02 pm

Hi All,

How many actual supporters do we have that log into the site under their partners account or under their own account. it woould be nice to see more supporters on the site and hear what they have to say about CH from where they sit on this Roller Coaster ride that we go on.

Matt


Posted in are they finally over? on 17 Dec, 2011 - 5:57 pm

Hi Tara,

I would presume that as we haven't from you over the last few days that you are still staying in the green. I hope for your sake that you are staying in the green and that you go out and a Happy New Year, even if you don't have a celebration drink just go out because you can.

Matt


Posted in Pain Easing Off on 17 Dec, 2011 - 5:52 pm

I have to keep fighting the fight or else it will get on top of me like it did a few weeks ago. I trust and hope that everyone will have a Merry Christmas and a Happy New Year and dare i say it we will all be pain free, even if it be only for those couple of days.


Posted in Pain Easing Off on 17 Dec, 2011 - 4:07 pm

The Specialist has now added MS Contin to the mix of pills that I am on, Mind you the pain isn't as hard as it has been. He also said that he didn't want me to reduce the other Narcotics that I am on. They are taking me off the Endep as it seens to be doing Jack at the moment even after we raised it up to the limit. They are looking at stopping the Lyrica in Feb to see how I go and then look at doing the new implant as i am seeing the Neuro Surgen at the beginning of Feb to discuss everything that he will be doing. Mind you i could prob do the surgery on my own after all this time.


Posted in desperately needing help. losing my mind................ on 16 Dec, 2011 - 6:27 am

Adam,

I forgot to mention there is also an abortive called Maxalt.

So when you go to see your G.P next ask them about Maxalt, Imigran (Spray, Injections or Tablets Fast Acting), Relpax and Oxygen.

With the O2 you need to get a letter from your GP that states you require a flow rate of 15L/Per Minute. I'm not sure where you are situated but if your GP is not willing to help you then you need to find a new one. Have a look at the Medico's that we have listed on the site there may be one near you.

Please remember that we are not Dr's but just offering advice from our own life experiences.

Matt
Silent Planet


Posted in Live Chat on 15 Dec, 2011 - 9:28 pm

Hi Peace,

I hope that it was a freak one off and not starting a new cycle, just what you didnt need coming into Xmas. If you do get a chance the new chat room is just for people having a chat but it is not the place for people to start using it as another forum. If you have any questions they still need to go in the forums and not on the chat.

Matt


Posted in desperately needing help. losing my mind................ on 15 Dec, 2011 - 4:00 pm

Adam,

It is a bit of a concern that your local G.P will not subscribe anything else for you other that the prednisone and verapamil see if your G.P will give you a script for Sumitriptan or Imigran it comes in Tablets, Nasal Spray or Injection (it comes in a self injection kit) very easy to use and works the best. The only prob is that it is quite expensive and only comes in 2 injections per script. If you have Private Health cover you can clain it on that. If you have an appoiuntment it is always good if you get your G.P to call the Neuro and make the appoint for you while you are in with the G.P you can find that if the G.P does it for you, you might get an earlier appoint than what you already have.

Good luck with everything, have a good Xmas and a happy new year.

Matt

Silent Planet


Posted in Don't Let The Beast Rule Your Life on 12 Dec, 2011 - 9:02 pm

Hi All,

Thank you for all your kind thoughts, Thanks Peter i know at some stage there will be light at the end of that tunnel. I live for the day when i will be pain free for a short period of time.

Matt


Posted in Live Chat on 11 Dec, 2011 - 11:18 pm

Hi Everone,

As we have a new chat so we can talk to each other, it would good to see more people using it. Roger has gone to the trouble of tracking down a live chat system and installed it on the server I thing that it would be good to see more people using it.

Thank you for putting a live chat system on the server for us to use, as you said it's just for chating on and not for posting questions on. lets all start using it.

Matt
Silent Planet


Posted in Untitled on 11 Dec, 2011 - 9:55 pm

Heather,

I have heard about the Botox using multiple injection sites on the head but from understanding I thought that it was used for migraines and not CH. If you do go ahead with this is there no way that it can be done under Medicare that way it wont cost you the hendreds of dollars that youwill be up for. You should probably ask your Neuro about this or see if there is any way of reduving the cost to you.

As for getting off the Topomax, have you thought about the implant that I had done, please don't think about what happened to me but it might be another idea that ypu might want to discuss with your Neuro. As I have said the implant does work it was just unfortunate that my one happened to get infected. I know that what I had done sounds a bit scarey but trust me it is well worth it in the end. Just an Idea or there is the other proceedure that i mentioned up above.

I know that there is alot to take on board and alot of info that you need to read up on and see what you think that might be good for you.

Matt


Posted in It's not easy being Green... (pointless trivia) on 11 Dec, 2011 - 9:35 pm

Tara,

As i sit here Ice Pack on head and 50mg Endone & 15mg Morphine suffering in silence and reading your change to green, I envy you. Please enjoy your your time in the green. I think that i speak for everyone when I say this, I hope that you have a green Xmas and a Happy New Year while you contemplate 2012 and all the joy that you may have in the new year.

Matt


Posted in Untitled on 10 Dec, 2011 - 7:03 pm

Hi Heather,

I have had to botox injection, there was only one injection. if you feel around your eye socket you will feel a small dent in it, it is at the top of the socket. That is where the Trigeminal nerve starts and that is where they do the injection. The first time i had it done i had success with it, it didn't last to long though. It was done as a prelude to having a Spheno Palatine Gangleon Block where they insert a needle into the side of your head all the way into a nerve above the pallet in your mouth, they then inject Local into it where they are turning the nerve off. Once the nerve is turned there is no time limit as to how long the nerve will be turned off for, it could stay off permenantly. It is a bit hit and miss as to the success rate of this but it might be something to mention to your neuro. I hope that this info is useful to you.

Matt


Posted in are they finally over? on 08 Dec, 2011 - 4:18 pm

Hi Tara,

I hope that all is going to be good for you, I hope that you stay in the green for some time to come. I hope that you have a green Xmas and New Year with all of your friends and family As heather said take things slowly as you don't want to rock the boat.

All the best

Matt


Posted in Don't Let The Beast Rule Your Life on 08 Dec, 2011 - 4:10 pm

Hi all,

At the momnet things are getting a bit tough for me again, even after increasing the anti depressants to a very high level it is slowly creeping back in. I am at the point where all the meds are not working for me so what is it use of being on them anymore. I am seeing my Loony Dr tomorrow and i will bring this up with him all the meds are doing is making me forget things, become a grumpy old man, i have put on a lot of weight not to mention the other side effects that they have. I was hoping that after all the surgery that i have been through that the CH's might ease up a little bit, but i have noticed that as i am getting older and cycles are getting longer the pain is getting alot stronger all the time thus i have to increase the pain meds to over the max dossage, for any normal person they would be flying high for a week. I have built up such a high tollerence to the pain meds it's not funny any more.

Peolpe joke that im about to go and get high but its not funny any more, people don't understand that these drugs are dangerous and it doesn't even get me high as they say all it does is give me some time where that pain is at a level that i can deal with it and have a more normal life. My wife has run out of places to give me injections due to all the scar tissue building up over the years and the meds are not doing what they are meant to be doing. I am not giving up but i'm sick of all the meds that i need just to try and have a normal sort of life with my family.

The say Xmas time is meant to be a joyous occasion but for all of us i think that we are thinking when and if the next attack is coming what are we going to do. Sorry to be thinking in a negative way but after 12 months of constant pain i am nit looking forward to all the Xmas parties at the moment.

For those that are pain free at the moment i envy you but i also wish all and everyone of you a Merry Xmas and a Happy New Year and may we all be pain free at some stage on a permanent basis.

Matt


Posted in CORNY I KNOW on 06 Dec, 2011 - 6:18 pm

Kim, We try and offer as much support to all on the site, no matter what it is it might just be a few words or a lengthy story.

Heather, i have been to france and it was around Xmas time and i enjoyed every minute that i spent there. I hope that you enjoy your time over there.


Posted in desperately needing help. losing my mind................ on 05 Dec, 2011 - 11:22 pm

Adam,

Hello and welcome to this family of Cluster Headache sufferes, I agree with what Peter and Heather have said. Only you can help yourself, if you think that your Dr is not giving you the right advise, find another GP that is willing to help and understand what you are going through. There are a number of medico's listed on the left hand side of this web site. Try and find a GP from the list on the LHS that is near to where you live. Illeagle drugs are never the way to go, you need to try and stop using them so a GP can treat you correctly. If you find a GP that is willing to help you out make sure that you tell them about the drugs that you are using and let them know that you are willing to stop using them so that you can get the correct Meds to try and Prevent and Abort an attack. There are lots of new meds that are always being used all the time. You will never get a GP to take you seriously if you are using drugs.

Try and find out if there is a Pain Management Clinic in a hospital near you, i know that sometimes it may seem as though there is no support out there but you have made to right first step by finding this web site. You must remember that we are not Medicos ourselves but you will always that there is always someone on here that can and will offer some good advise, there is alot of information on this site read it and even print some out and take it with you to show your local GP so they can read up on Cluster Headaches.

Good luck with finding a GP that is willing to help you, Remember that you have to make the first step in controling these CH's.

Matt
Silent Planet


Posted in Don't Let The Beast Rule Your Life on 05 Dec, 2011 - 11:12 am

Heather & Ben,

Heather
Your kind words are always an insperation to all of us on the site, even when you are going through your tough times dealing with other things in your life. You always take the time to welcome new members with words of wisdom in your time of need.

Ben
With all the research that you do for everyone on this site it is most appreciated, As you are going through tough times, with your accident earlier ion the year (car falling you) and your wait to get the Nerve Stimulator Implanted. The time that you take to do the research is always appreciated.

As we all go through these tough times it is always good to know that there is someone out there that is willing to take the tome to reply to a posting and offer some find words.

Matt


Posted in Don't Let The Beast Rule Your Life on 04 Dec, 2011 - 10:48 pm

I was just saying to my wife tonight how i'm not going to let the beast rule my life. We went to dinner and a show tonight we saw the band Dragon (Some Of You Might Remember Them) about 10 - 15 mins into the show the beast showed it's ugly head. I was not going let it ruin my night, it quickly shot up to a 7 - 8/10. I didnt let my wife know that i was suffering until after the show finished.

We need to still have a life without the beast ruling our lives. I have never let it rule my life untill this last episode started in November 2010, it's now been 1 year since it started and a number of surgeries later the beast has been ruling my and my families lives. I am now going to start taking my life back and start enjoying the time when the pain is at a minium and spending more time with my family. If it means that i have to take more drugs to get some pain free time then so be it, but the beast is not going to rule anymore.

I would like to thank everyone on hear who has ever had words of encouragement for me i thank you. If it wasnt also for my team of speialists i probably would not be around to thank everyone, As they say these are not called "Suiside Headaches" for nothing but if it wasnt for everyone on hear and around me especially my wife and 3 kids i wouldnt be here.

I know im ranting on a bit, but if you only do one thing today try and take control of your life and not let the beast rule it for you.

Matt
Silent Planet


Posted in Ride for Awareness on 04 Dec, 2011 - 10:22 pm

Hi All,

I might contact the tax office and see what is needed to set up a not for profit charity or a foundation of some sort. i would like to see two things happen from this ride and a foundation that is set up. 1. we can get the gocvernment to put monies into studies being done so that one day the will find a cause witch then leeds to a cure. 2. that for people like me who are unable to work anymore that there is some sort of financial assistance available. There is a cause already set up on Facebook if you just type in Cluster Headaches there is a cause there which i think is linked to this site, so if you are on facebook look it up and let all your contacts know about it, so for all the contacts that you know if they just pass it on to one of their friends we can get it out there for everyone to see what we go through.

So at the moment i'm still up for a ride for awareness and will do anything and everything i am able to do to get the condition out there.

Matt


Posted in Newbie locked down on 04 Dec, 2011 - 1:30 pm

Hi Minie,

Sorry to see that you have had to come on board with us all, but great to see that you have found us. Everyone on hear is verry supportive. Most of us on hear have our own little fields that we are experts in, I'm a specialist in the surgery side of things, Ben is our resident information guy, you want it nad Ben will find it.

Please read all the information that you can on this site, go through some of the old forum topics as there is smon good info there. When you go to see your GP ask about any Pain Management Clinics run through the public hospitals. Get your GP to make any appointments for you whike you are with them, sometimes it helps if they make the appoint for you as you might get in a bit quicker than if you called yourself.

There are so many different abortive meds out there it is just a matter of trying them till you find something that works for you, Imagrin Injections are good to have with you while you are out. They are a little bit expensive but you might find that they work. There is also a Fast acting tablet and a nasal spray all under the name Imagrin. Do give the O2 a try if you dont have it already, just get your GP to write a letter for you with the instructions that the air flow rate must be 15L/Per Minute call BOC gases and they will set you up with an account.

Most importantly, remember someone is always around here to try and answer your questions but you must remember that we are not Medico's so all the information that we give is from our own personal experiences.

Good luck with finding a good Neuro, Let us know how you get on.

Matt
Silent Planet


Posted in Causes on Facebook on 30 Nov, 2011 - 10:59 pm

Hi All,

I was just thinking on ways to get our condition heard about. Have we or do we have a causes page on Facebook, only an idea at the moment but i figure it is one of the bigest social networking sites in the world so what better way but to get us recognised but to have a causes page on facebook. Let me know what you think

Matt


Posted in Introduction on 29 Nov, 2011 - 12:25 pm

Hello Victoria,
Glad to see that you have found us, soory to see you hear as another sufferer. As you say "not ready to start treatment with steroids" I would try and get into a pain management clinic, Im not sure where you come from, but if there a large hospital near you i would be investigating weather they have a pain management clinic, if they do get your Dr to call them and make an appointment for you while you are there, it can be alot quicker if your Dr does it for you.

Keep using the O2 and the cold water, do try and stay away from the Steroids. Look at and read as much info that you can print some info out and take it with to your local Dr and that way they have a better understanding of what is going on. Encourage your GP to look at this site, even join up we could always value the opinion of a Dr on this site.

All the best

Matt


Posted in Untitled on 28 Nov, 2011 - 7:26 pm

Hi all,

Well i have just finished the trial with only the from lead inserted under the skin, unfortunately it has not worked as good as what we were thinking it might do. I go in tomorrow to have it removed. Now we will have to wait till next Feb before we can do the next surgery, we were hoping that we wouldn't have to go back into the wound at the back of the neck where all the infection seems to start from.

I had a really bad one today reaching 9/10 on the scale, turned on the stimulator, O2, ice pack after an hour still not having much joy 30mg Endone after another hour had to have the Morphine injection adminestered by myself. Finally it started to ease off a little, finelly it dropped down to a 4/10 which was bareable for the next few hours.

I would just love to have some sort of break in the cycle, 12 months and still going strong. Still got 6 months to beat the longest cycle, the only thing that keeps me going at the moment is the support from my family and being able to vent on this site and all the good support from all the wonderful people from on here. If it wasn't for this site with all the people going through what we all go through i probably would have ended it along time ago.

iconiconiconiconicon I would just like to say thank you to all the people who are going through this terrible condition with me, We should try to organize a get together in each State so we all can just actually meet and great the faces behind the website. Enough of my ranting, may we all be pain free one day.

Matt


Posted in Ride for Awareness on 26 Nov, 2011 - 11:10 am

Hi All,

I have spoken with with my contact and he has advised me to look at some websites and also look into weather we need to be a registered Charity. He also suggested we get something on facebook with a cause set up on there and maybe putting a link to this website. I think that should be a job for Roger.

Let me know your thoughts.

Matt


Posted in Untitled on 25 Nov, 2011 - 8:05 pm

Hi All,

You won't believe this, the lead is sticking out in a strange way and i flung my hand it got caught on the lead and pulled it out by about 4-5mm now there are 2 exposed sensors from my head. Had to have a home visit fron the St Judes Tech to reprogramme the unit. Still thinking that the 2 leads did the best for me when they weren't getting infected. Still got till Tuesday next week for the trial to be completed.

See you all on the other side.

Matt


Posted in Untitled on 25 Nov, 2011 - 10:26 am

Hi All,

Iv'e now had the implant in for 4 days now, I am getting some relief from the single lead in the head but i think that i need both leads in. I still have 4 days to go so there maybe some hope after the trial id done.

Matt


Posted in Are they cluster headaches? Who can diagnose me properly? on 21 Nov, 2011 - 9:58 pm

Chris and Tara,

Just to let you know I am on 250mg/perday.

Matt


Posted in Hello im emily :D on 21 Nov, 2011 - 7:56 pm

Hey Emily,

Sorry to see you on this site but glad that you have found us, If your GP is ok with referring you to specialist's try and get into a good Pain Management Team in the local hospital. Where abouts are you from, What sort of preventatives are you on except for the O2 that you will be getting. What sort of abortatives are you on, i would guess from what you have said that you are on Narcotics. I would suggest that you try and stay away from them as they are very addictive and very hard to get off and also cause rebount headaches. Take it from someone who knows, i am on 50mg Endone per day and 20mg Injectable Morphine every 2 days which my gives to me so i dont have to front up at my local GP every day. there are Dr's out there that don't bother to look at your history as a patient and will refuse to treat you because they 1. They dont prescribe S8 narcotics no matter what you have, 2. Think that you are just a hypocondriac or addict.

More GP's and E.R Dr's need to be schooled in this condition before going off and think the worst of you and will refuse to treat you. I am glad to hear that you are studying to be a nurse where you will be able to educate some people about this condition.

As you are studying and trying to raise 2 small children the more people who are around you see this site so that they can become better educated on what is going on with you so they will know when to try and help and when to back off. You don't have to answer this question, do you have a partner who is willing to read up on this condition and help you through this bout.

Please read all the info on the left hand side and even print some of it out and take with you to your GP so they get a better understanding of what is going on.

Enough ranting from me. We are all here to help and answer any questions you might have, Always remember we are not Dr's just only people who have suffered for a very long time and know more about that any Dr will ever know.

Matt


Posted in Are they cluster headaches? Who can diagnose me properly? on 21 Nov, 2011 - 7:31 pm

Hey Tara,

Good to hear that your cycle might be coming to an end, might i suggest that when you next see your GP next time get him to call and make the appoint for yo. you might find that with the GP calling while you are with them you can get a quicker appoint than you migh have if it was you just calling. I always get the GP to call for me and get a quicker appoint than i would have if i call on my own.

With the Endep do you get a very dry mouth, if so it will pass after a couple of weeks.

Matt

Matt


Posted in Untitled on 21 Nov, 2011 - 7:12 pm

Hi All,

Got a call on Saturday night from my Specialist in the PMT, advising me that he has scheduled a surgery for me on Tuesday for another trial implant only using the lead at the front of my head thus not having to go near the wound at the back of my head. We will do the trial for a week and see how that goes. He will be coming from the left hand side (LHS) of my head so he doesn't have to open up any of the old wounds. I hope that this works because i can't take this for much longer.

At the moment the depression is getting worse and my wife and i are going through a bad patch. What else could go wrong for me this year???? All i need is for the bus to clean me up while crossing the road.

I will let you all know how this implant works out.

Matt


Posted in Untitled on 15 Nov, 2011 - 3:39 pm

Hey Ben,

My GP has started me on a Mental Health Program where i see the Psychiatrist through the PMT and i also see a seperate councillor that i have used before. As i have said before if you need the help because you are feeling depressed dont hole it in get some help as it will only get worse unless you are treated when you notice a change in your moods and start feeling overwhelmed from everything that is going on around you.

Matt


Posted in Untitled on 15 Nov, 2011 - 1:31 pm

Hi All,

Going through a real bad bout at the moment and it isn't helping on the marital side of things. I thing that things between my wife and me are getting very strained, like me we have had enough of the pain that i am in every day. There is only so much that a couple can take. With all the meds that i am on especially the Endep, I am not getting break from the pain and my moods are changing every day and not for the better. I am still on the increase with the Endep at 200mg/pday and need to get it up too 250mg/pday. Although it is an antidepressant it ins't doing much for the moods. I see my Pain team in a couple of weeks and will bring it up with them. Not due to see Loony Doc till December, might have to try and bring appoint forward. I also have to go and see a councilor just to try and talk things through. I know that I have said this before but if you are getting depressed and things are getting on top of you like things are with me dont be ashamed about going to see someone about it. It might be the best thing for you. Get you local GP to do a Mental Health Plan for you it doesn't cost you anything and you get 6 - 10 visits for free and it can then be extended if need be. Head starting to get real bad around 8 - 9 pain lvl. Will scome back when the pain has subsided.

Matt


Posted in Are they cluster headaches? Who can diagnose me properly? on 11 Nov, 2011 - 7:59 pm

Hi Tara,

I am on the Endep 250mg/per day, you need to on at least 50mg/per day to get any result from it. It can cause a bit of dizzyness if you get up too quickly, so don't jump up when you need to get up, just take it slowly. I am also on Maxalt, not having much joy with it yet.If i could afford it i would be on Imigran injectable as that gives the best relief from the CH's, unfortunatly it is around $120.00 for 2 injections.

In relation to meds not liking each other you should always go to the same pharmacy as they will know if certain meds are going to play nicely with each other, don't always rely on the GP for this sort of thing as the chemist's computer will start having a pink fit if the meds are not going to play nicely with each other.

Try to keep a diary of your CH's (when they come, food you ate, what you were doing, meds you took to abort) all this info will help your Dr or Specialist. Don't be affraid to ask questions, if you don't ask you won't get a better understanding of what is going on. I'm not sure about the local hospital out your way but do try and get into a good pain management clinic, I find that the one at Royal North Shore Hospital seems to have a good understanding about this condition, If you are willing to travel over the bridge then get your GP to make an appoint for you while you are in with them, 02 99267676 Dr Charles Brooker is the Dr you want to see. The other thing you need to understand is as much as the pain hurts and is debilating at most time you shouldn't let it rule your life. At some stage you need to be able to take control, after suffering for 39 years i have learnt to try and take control as much as possible. If you decide to go to Royal North Shore let me know. I am going on the 23rd Nov to see him.

Good Luck with whatever you decide to do and remember we are always here to offer advice or try to answer any questions you may have.

Matt


Posted in Ride for Awareness on 10 Nov, 2011 - 9:35 am

Hi All,

I have just emailed my contact to try and get some info on getting the ride for awearness up and running and getting a foundation set up.

Please we need more input from every member on this website if we going to get things going.

Matt


Posted in Are they cluster headaches? Who can diagnose me properly? on 10 Nov, 2011 - 7:13 am

Tara,

Maxalt is one of the newer meds used to abort an attack, I too have been prescribed it from my GP. I will need to do some reading up on it later.

Endep is an antidepressant and is becoming one of the more commonly used drugs to treat pain. I presume you are 50mg a day which is a low dose, i am on 200mg a day and increasing to 250mg. I will help with your sleepnig, the only thing wrong with it is that it gives you a very dry mouth.

As Peter said you don't need to wait till you see your neuro to get on the O2, just ask your Dr for one stating that you get headaches and you need a flow rate of 15l/per minute and call BOC gases and they will set up an accout for you over the phone.

Good luck

Matt


Posted in Ride for Awareness on 08 Nov, 2011 - 9:03 pm

Hi all,

does anyone who comes to this site have any sort of contacts in the corperate worlk. For us to get a ride for awareness up and running we need more support from all the people that suffer. As we all know there is not alot of reaserch done for us so as a collective we all need to get involved. If we want to try and raise awearenesswe need more than the few people that have responded on this topic.

I don't want to sound like i am harpping but due to the fact that no one except the sufferes and our supporters really know anything this horrid condition we all need to get involved. It doesen't matter what you do but every little bit helps.

I dont want to get my contact involved untill we have a good responce from everyone here.

Matt
Silent Planet


Posted in Untitled on 08 Nov, 2011 - 5:22 pm

Heather,

Its bad enough that you have to dael with CH's everyday, but too have to add other problems weather they be medical or personnal. Hang in there just remember that there is a light at the end of the tunnel. Always thinking of you.

Matt


Posted in Untitled on 08 Nov, 2011 - 2:59 pm

Ben and Peter,

Thank you for your kind words, i am feeling alot better this week. Still in alot of pain each day but i am managing my depresion better this week. I still have my moments where if someone asks the wrong question i start thinking again. I am now seeing one of the top Psychiatrists with the PMT to try and help me with what has been going on. We also increased my depression meds and that is playing around with my body at the moment but everything will settle down after a week or so.

Matt


Posted in Ride for Awareness on 07 Nov, 2011 - 8:36 pm

Hi All,

I hope we haven't forgotten about this thread, i have been given a contact who is willing to help out and point us in the right direction. He set up a foundation called "Touched By Olivia" google this and have a look at the web site, it will give you an idea what he is about. I will be emailing him during the week but before i do this just wanted to check and see if we are still interested in doing this.

Matt


Posted in Are they cluster headaches? Who can diagnose me properly? on 07 Nov, 2011 - 8:23 pm

Hi Tara,

Sorry to hear that you are unable to get into a neuro till next year, do you have a regular GP that you see. If you do try and get them to make an appoint for you with a Neuro or a Pain Management Clinc near you or if you are willing to travel try Royal North Shore Pain Management Clinic, Dr Charles Brooker 02 99267676. He is the specialist that i see, but get your GP to make an appoint for you while you are with them. Sometimes you might find it a bit quicker to get an appoint.

Have you started a Pain Diary? List everything that you do and eat during the day, if you haven't started one do it now and take it with you when you see a specialist. See if you GP will give you a letter for you to get O2 (Medical Oxygen) at home. The letter needs to contain the sentances that you suffer Cluster Headaches and a flow rate of 15L/PM. It's not very expencive but alot of people on this site will swear by it. BOC Gas is the supplier for Sydney, you will need to set up an account with them (very easy) call them on 1800 050 999.

Please remember that what ever you do please consult a Medical Practisioner before starting anything that you find on the web site, as we are not Dr's and only offer advice for what has worked us in the past. There are many meds out there that can help prevent Ch in different combinations and also many abortive meds as well.

One thing you shouldn't do is be afraid of going to sleep of a night time that can and will make things worse and can lead you on a path that you don't want to go down. Please see you local GP for some help to try and get you through the next weeks or months until you get in to see a Specialist. Print off as much info as you can to take to your GP so the can read up and try to start you on the right road to being pain free soon.

Matt


Posted in Are they cluster headaches? Who can diagnose me properly? on 06 Nov, 2011 - 4:32 pm

Tara,

Glad you have found us here, sorry that you have to be here suffering like all of us. Glad to see that you are going to see a Nero to see if it is actually CH. If you can't get in to see Dr Griffith for quite some time, it is good to get your local GP to ring up and make an appoint for you as you can sometimes get in quicker if the GP calls.

If you do get diagnosed with CH there are many meds that can control CH and you can try to lead as normal a life as possible. There are also some very good abortatives on the market. Try to read as much info from the tabs on the left of the page, as they can be a great help in to understanding this terrible condition.

If you are getting depressed make sure you tell your GP or the Neuro so that can also be looked at. One thig that happens with CH sufferes is that with trying to deal with all the pain and not knowing why we get them you can fall into a deep hole and then it can be very hard to get out of. Do your parents live in Sydney as you need to be able to tell someone about what you are going through, with drawing yourself from the social seen and always wondering when the next attach will happen is not a life. You need to enjoy the time that you are pain free otherwise you will fall down in a big heap.

Please don't hesitate to ask any questions, we are always here to try and help out. Even though we are not Dr's we all as a collective probably know more about this condition than the average GP.

I hope for your sake that it isn't CH when you go to see Neuro, but to be on the safe side it doesn't hurt to read all the info you can about CH so you are prepared for the outcome when you see Neuro. If you can't get in to see the Neuro try to get into a Pain Management Clinic as they are probably the most clued in Dr's you will find.

Matt
Silent Planet


Posted in Untitled on 03 Nov, 2011 - 4:08 pm

Hi All,

Sorry i haven't been around for the last few weeks, i have been going through a really bad patch with the pain and also the depression has also set in. I hit rock botton last week with a lot of very stupid thoughts going through my head. Went and saw my GP who started a Mental Health Plan for me where i have been given emergency appointments for a psychiatrist to be asessed and maybe adjust my loony icon
meds or start some new ones.

I have also been given Maxalt to try, had one the other day without much luck, still trying the O2 as well. Getting a little bit of relief from the O2 but not much. My Pain Management Team are in the process of planning for the next implant to be done next Feb. They are bringing in Infectious Disease Team, Neuro Surgon, Both Psych's and a Dermotolagist. This way he is hoping that nothing can go wrong.

Feeling a little bit better this week mentally anyway, still in a lot of pain with 4 - 5 CH's a day ranging up around lvl's 8 - 9 still taking all my usual meds and have had to up the narcotics to lvl's that we are not happy with, my PMT says that even though it isn't getting rid of the pain if it gives me some sort of normaqlity in my life even if for an hour or 2 then we have to stay on this sort of track. Mind you when i do eventualy stop with the narcotics withdrawal is going to HELL, might send wife and kids away for a week while i go through it.

So i will be around a little bit more often than what i have been lately and i need to catch up on what's been going on with everyone.

May we all be pain free one day.

Matt


Posted in CH - Do they ever stop? on 03 Nov, 2011 - 3:47 pm

Jrod,

I have suffered with CH since i was 8 years old now 44, they used to tell me that i would eventually grow out of them. Well i stopped growing when i was about 17 but I still suffer these Dreadfull things.

I am finding that as i get older they are getting worse, this cycle has been going on for 12 months now and the one before went on for about 18 months. Mind you i did have 10 months of pain free time.

So in answer to your question, we can't really say when and if they will ever stop. Your Neuro was very silly in giving you advise on a condition that we dont even know what causes them let alone if you will ever be rid of them.

Matt


Posted in Supporters Of CH Sufferes on 15 Oct, 2011 - 1:17 pm

Hi All,

I have been looking around at some other sites as of late and i have noticed that there are lots of supporters on these sites. As a sufferer i know about all the pain that we go through, but i think that we sometimes take our partners of close friends for granted sometimes. I know that they don't through the pain and all the disappointment that we go through with all the drug trials but they are always there for us and would do anything for us not to have to go through all the pain.

I would like to see and hear from our supporters, because i know that at times they would also like to vent and hear from other supporters on how they deal with everything. I know that my wife has also gone through hell and back with me, we have 2 daughters and i have another son that does not live with me. When I am going through an episode she has to do everything that i would normally do and also try to run a household while working full time. It was my wife that put me onto this site and does all the research for me, mind you this site has been a god send for me. Some of the other sites that i have been to were a bit too sterile for me.

So i would like to give a big shout out to all the supporters out there who go through as much crap as we do, if it wasn't for my wife and children i probably wouldn't be here now.

Matt


Posted in Well It's Official on 13 Oct, 2011 - 5:34 pm

Hi all,

It's official, I am now classed as a person with a disability. The government has allowed me to go on a Disability Support Pension, it doesn't pay that much but every little bit helps. I even get a little blue pension card that allowes me to get discounts on all my utilities.

If you are like me and cannot work due to your CH's and have no form of income coming in you should apply for the pension, even if you can only work part time you should have a go at it. You have to jump through a few hoops to get it but with the right letters from your Dr and Specialists you should be able to got some sort of support from them.

Matt


Posted in just how far can you go on 13 Oct, 2011 - 5:18 pm

Hi Alex,
I'm glad to hear that you are pain free at the moment, I sit at home waiting for those days to come "if only for a brief time". I too have had the infusion twice, the first time worked a treat i was pain free for almost 12 months, mind you i was in pain for 18 months. The 2nd time i had it, it didnt work and that's when they decided that i was a good candicate for the Nerve Stimulator Implant, which works but keeps getting infected. This episode has been going since November 2010 and since they took the last implant out I have been in pain every day since and have to rely on those nasty narcotice to get some sort of relief and will be like this until 1. the episode ends by itself or 2. they do the next implant which will not be until at least March 2012.

So i'm glad to see someone go from being in the red to being green, the more green the better for all of us.

Matt


Posted in Ride for Awareness on 13 Oct, 2011 - 2:47 pm

Hi All,

Sorry haven't been around forthe last week or so, haven't been to good. I will hopefully be getting in contact with someone who deals with this sort of thing all the time. With any luck i can get him to jump on board and give us a hand.

Roger,

Can you send out an email to everyone asking them to take a look at this thread, as you know alot of members when they are not suffering tend not to look here as much as when then they are suffering.

I will let you know how i get on after i chat with this person.

Matt


Posted in Ride for Awareness on 02 Oct, 2011 - 8:52 am

Hi Chris,

You can count me in for what ever you need me to do, the bike ride sounds like a good idea which i would be happy to partisapate in. I think that if we can get enough people involved from the site here and some media coverage we would be half way there. There is always the trouble with getting some sort of corporate involvement, but if anyone on here has any contacts that would be good.

With the name change i have been doing a bit of investigating about that and it would be more trouble than it's worth due to the fact that the name Cluster Headache is the worldwide name for the condition and trying to re-educate everyone around the world would not be easy.

Maybe we can apply to the government for some sort of funding to get this idea up and running. Does anyone have any contacts for people in the sale or manufacture of bikes, Hotels or accomadation chains and car sales.

I would also like to help to get the ball rolling on this idea, as i will be off work for the next 8 months i have alot of time on my hands.

Matt


Posted in Just wanted to say HI and apologise for my being MIA! on 28 Sep, 2011 - 11:48 pm

Shell,

there is no need to say sorry for not being around, you havr to remember that your health and that of your family comes first. Conratulations on getting married, sorry to hear that Cory has been going through such a rough time with all the surgery and the blood infection. I hope that he is on the right path to getting well again, i hope that these last couple of days for Cory being pain free have let you both just sit back and relax with not worrying about when the next attach will be and that Cory remains pain free.

Shell, i hope that you are on the mend with the depression i know what it is like to be on a downwood slide and thinking when will it end and will i start to pick up again. It can be tough on all the family and especialy on the kids who dont understand why mummy is crying all the time and why you don't want to play like you once did.

May we all be pain free in time.

Matt


Posted in yay back to "not currently suffering" on 28 Sep, 2011 - 5:19 pm

LovePeace,

Good to hear that you can finally change your status from RED to GREEN, let's hope that you are pain free for quite some time and not just till your next appoint with Neuro. It would be good to hear from you every now and then if only just to say "hey all i'm still pain free".
Good luck over the next 12 months and lets all hope and pray that you are still pain free this time next year. Now you will be able to spend more time with the kids.

Matt


Posted in Untitled on 28 Sep, 2011 - 5:14 pm

Hi All,

I spoke with my specialist today about changing the name, there are a few things that we have to do to try and get it changed, the first problem is that the name "Cluster Headache" is the only name that it is recognaized by internationally by all Neuro's and Pain Management Specialists.

He also said that we are ballsy trying to change the name and that it is not something that he would like to try and tackle. The one good thing is that for the Australian Society of Pain Management the chair of the board is a Prof M Cousins and he has seen me before and he is located at Royal North Shore Hospital where i happen to go, so i can try and get his attention with a letter and see what he has to say on this or if he could point me in the right direction. Will keep you all informed on how it goes.

Matt


Posted in just how far can you go on 28 Sep, 2011 - 5:04 pm

alex,

Firstly good to hear that you are still around in the land of the living. Sorry to hear that there were some life threatening side effects from the meds that you were on. I hope that you can still use the Imigran to beat the beast even if it's only for an hour, that hour is the best part of the day for me.

You mentioned a nerve block can you recall the name of it, was it called Spheno Gangleon Palentine Nerve Block? If so i have had this done before and the first time i had it done i get 12 months pain free time, the 2nd time i had it done it wasn't so successful and i was back in pain straight away. Don't get me wrong i think this is a good way to go as you could get some very valueable pain free time out of it. yiou also mentioned to Nerve Stimulator have a look at a thread in Medications and Treatments for a topic called Lyrica there is some good info about the nerve stimulator as i have also had that done the 1st time it was done it was working well then it all got infected and had to be reomved, then 2nd time the same thing happened as i don't think that the infection was all cleared up so that was also removed, we are now waiting 6 -8 months before trying it again. The good tihing about it was that it actually worked and i was able to do without all the narcotics to stop the pain. This is not a cure but another way of treating the pain, i sent ben some info on the devices and gave him a web add for one of the comapnies that make the stimulators. If you wish me to do that for you just PM me and i will send you the info. I can also copy the info book and post it to you if you like just PM me your address so i can send it.

Good luck with the nerve block when they decide to get you in.

Matt


Posted in Anyone else's CH go to eleven? on 22 Sep, 2011 - 10:49 am

Hi All,

I dont think that we can class normal pain in the same class as CH pain, they are totaly different scales on the pain levels. I suffered a minor heart attack a couple of years ago and the pain from that was up around 8-9/10 but compared to a CH it would have been around 5-6/10. When dealing with pain other that CH we need to try and remember what the average person would class this as and then seek the correct pain meds for that pain.

If we classed all our pain on the same scale that we class CH we would never take any sort of pain mends and could end up with even mopre serious complications, like Ben said he should have used the average person to rate his pain as he could have been alot worse off than he was. Good to hear that you are feeling better after your little mishap.

Matt


Posted in just how far can you go on 22 Sep, 2011 - 10:39 am

Hi Alex,
I hope you are doing better at the moment, there are always times when we feel that there is no light at the end of the tunnel. Have you thought about trying some of the old treatments that you have had in the past? as you know we build up a tolerence to these drugs over time, once you have been of them for some time it might be a good idea to try some of them again. Mainly the oes that have worked well in the past. i am looking back over my past history for things that have worked before and looking at trying them again. at the momnet i am sitting here waiting foe my O2 to be delivered going to try it again. I am not looking forward to being on the Narcotics for the next 8 months until they try to do my implant again.

When you get in these depresive times do you take any sort on anti-depresant? Being in so much pain you will get depressed and you need to take something for that as the depression will only make the pain worse due to the stress you will be under. After suffering with these Ch's for 38 years now i know what the depression can do to you, i think that i am good and stop taking my meds until it all starts falling apart around me and then i start taking it out on my family. Im suprised that my wife hasn't left me yet iconicon. Good luck with the Neuro next week.

Matt


Posted in Untitled on 17 Sep, 2011 - 10:11 am

Hi All,

I think the next step would be to talk with our specialists to find out what the next step would be to getting the name of a condition reverted back to what it once was called.

I am not seeing mine till the 28th sept if anyone else is seeing there specialists earlier maybe they could ask for any ideas or information about what we would need to do next. Maybe i can write to the Federal health Minister about it too.

Matt


Posted in Untitled on 16 Sep, 2011 - 4:44 pm

Hi All,

I have been looking into some of the names that CH has been called over the years, for me i think that we should go back to where the original name came from before it was changes to cluster Headache. I like Hortons Syndrome as it was called back in the 1930's before it was changes. If you look up Hortons Syndrome everything points to Cluster Headaches. I can't see why we cant go back to where it started from, at least it will give the Doctors something to do when you present with Hortons Syndrome instead of them prescribing meds for a Headache they will actually have to do some research into what you actually have.

Just my thoughts on this, let me know what you think. the other names sound too much like a headache and not a CH.

Matt


Posted in My Introduction on 12 Sep, 2011 - 5:30 pm

Hi Alex and Everyone Else,

Sorry to hear that you have found this web site, but in saying that welcome to our every increasing family. I too suffered from the age of 8 now 44, i was not diagnosed until my mid to late 20's so i also went through school being taunted by teachers who didn't understand what i, we suffered from and what the pain was actually like.

I too have also tried everything that is opn the market for CH and anything that might also be able to give some relief even though it was used for some other condition. I rely on the narcotics to try and get some pain free time using 50 - 80mg Endone and 15 - 30mg morphine and yes as we all know narcotics are not the way to go due to the face that they are so addictive. I have also been on oxycontin 100mg p/d but found that when i trird to stop it i couldn't as i was so hooked on it. I eventually went cold Turkey ans suffered through the withdrawal badly, i try not to go back onto it due to the fact i can't get off it. With the Endone and thwe Morphine i can stop that straight away and have very little withdrawal. They even tried me on Methodone at one stage and man i never want to go therer again. i fell aslleep over the sink full of water while doing the dishes one night. My wife left me for about 3 weeks while i was on it as i couldn't function and was a danger to the family, i even dropped my baby daughter while on it. i dont now how Heroin addicts can live on that stuff.

At the moment i am suffering quite badly so i start to go on these little rants. ou said that you work for yourself what do you do, i used to work for myself doing gardening, handyman jobs, painting, cleaning and lawn mowing until the pain got to much and had to sell the business recently. I have just applied for a disability pension dur to the fact that i have been off work for the last 6 months and will be off for atleast 6 - 12 months until i can get in to have my 3rd lot of surgery putting an nerve stimulator implant in. See "Topic post on Lyrica" under medication to see about the implant very long story. ben is next on the list to try and have it done.

Sorry Ranting Now.

Good Luck, Dont Let Anyone Put You Down Because You Have A Rare Condition.

Matt


Posted in dam it hurts on 05 Sep, 2011 - 6:41 am

Stretch,

It might be easier to give up but knowing that the cycle might also stop at any time should be reason for not giving up. What sort of preventative meds are you on and is the O2 aborting the CH?

If the preventitave meds aren't working might be time to see your Dr or Specialist and try changing your meds, do you use anything else to try and abort the attack? It sounds like the pain is getting you down at the moment, if it is you might want to see someone about the depression. Dont feel embarressed about reaching out to other Dr's to get help thet might also give you some breathing techniques to help you get through the pain. there is a ADEPT program run through Pain Management clinics that you might want to look into, the program gives you different ways of dealing with the pain and you can also talk to a Psyc Docs about giving you something when your feeling a bit down. Meds for depression can also help as a CH preventative as well.

Good Luck, hope you can be pain free soon.

Matt
Silent Planet


Posted in Untitled on 01 Sep, 2011 - 7:39 pm

Hi All,
i too used to get the artery bulging and the pumping sensation on the R/H/S of the head and also a small lump used to appear on the front of my forehead which was another indication i was getting a CH. I remember when i was a kid and getting them in primary School i would get the other kids to feel it so they could feel the blood pumping around.

These days there are no warning signs that i have one coming on maily because the shadow is always there it's just the degree of pain that varies. I can go to sleep ok but all of a sudden wake up with a 10/10 and no warning.

Matt


Posted in It's back with a vengence on 28 Aug, 2011 - 12:41 pm

Hi Ouch,

I know what you are going through, i agree with everything that Heather has said. Try and see if your Dr will give you a script for the Imigran Injections they work alot faster than the tablets as it gets into your blood stream alot faster. Next try and get youe G/F to look at this web site and also do a bit of reserch for herself to try and understand this horrible condition better. Depending on what state you are from find yourself a good Neuro or Pain Management Clinic. Get your Dr to make appoint for you while you are there it is usually quicker if the Dr does it for you.

Do try the O2 as many people do have very good results with it, speak with your Dr and see if they will give you a letter for it.

You really do need to try and find a medication that suits you to try and prevent the attacks while trying to find a good abortive meds at the same time.

Good luck with work, i hope the your boss/manager is understanding if not take some litrature into work with you so they can see for thenselves what you are going through. It never hurts to have as many people around you that understand what you are going through. Remember we are always here to help you out but it's not the same as having your G/F around who it able to help you when the attacks come, my wife has been very supportive and was able to leave work when needed as her boss was informed of my condition and understood it a little better. Maybe your G/F can do the same with her boss so she is a bit more understanding of the situation.

All the best with this attack and this apisode.

Matt
Silent Planet


Posted in Untitled on 27 Aug, 2011 - 12:20 pm

Hi All,

I am starting this new topic to see how many people can come up with a new name for Cluster Headaches, as i am starting this topic i should be the first to give it a new name.

Chronic Vascular Head Pain
I know that this name is a bit lame but it is all i could think of while in pain. You dont have to come up with a new name you might like one that someone else has put forward.

Matt


Posted in It begins.... on 27 Aug, 2011 - 11:59 am

AD1210, Heather, Ben & Peter,

I have read you posts on the use of Endone as a tratment for the pain and the repercussions it can have and i agree it is not the be al and end all of treatments, but in my case after trying all the other treatments, i have found that Endone at 50 mgs per day combined with morphine 15mgs IM which my wife injects for my is the only way that i can get some relief in the pain. I am lucky that the addiction does not get me as once my cycle stops so does the morphine and the i slowly come off the Endone. But i would not recommend these types of doses for the average person, the only reason that i use such high doses is because my body has built up such a tolerance to the drugs.

As for AD1210's episodes starting earlier than usual you will find that after going under for surgery that can also bring on an attack. It might be a very short episode and then restart again in the Summer or you might find that as we gat older the episodes seem to change with age, i found that when i was younger i would always get them in the summer but as i got older the episodes where changing as well.

Now that i am 44 if find that i cannot predict when an episode will start and how long i will be pain free for, as i ahve mentioned before my longest episode lasted for 18 months with no break in the pain and this episode has been going on since November 2010 and im still waiting for a break in the pain, i have a shadow ther 24/7 it's just the intencity that changes.

Praying that AD2010's episode ends quickly for you.


Matt


Posted in Thank you. on 27 Aug, 2011 - 11:34 am

Saint and Ben,

Usually after you get Chicken Pox the after affects you would noramlly get is called Shingles which is an off shoot of Chicken Pox and you would normally get that if you have been in contact with a person that has Chicken Pox.

Prednisone is a very nasty drug with unhealthy side effects, with the main one being fluid retension in the body therefor you gain alot of weight in a very short period of time. i was usually given in injection of Steroids then put of 100mg of prednisone a day for long periods of time and the gradually weined off it very slowly. Only after which i had gaind a considerable amount of weight usually around 10 - 25 kg's. I was lucky I could usually work most of it off and i worked outdorrs doing physical work.

Matt


Posted in Chronic Pain as a recognised condition on 27 Aug, 2011 - 11:27 am

Ben,
My team of Specialists are pain management Dr's and work with the nervous system all the time, they have done many implants for migraine, back and lower leg problems due to the nervous system not working properly. As i said previously i was the first to have it done at the front of the head on the Trigeminal Nerve. The reason it was done at the front was to give greater coverage of the stimulator so eventually the stimulation would meet up in the middle giving better relief from the pain.

We know that the lead at the back of the head for the Ocipital Nerve works well as trials have proven in the past but this was taking it one step further and trying to see if we could get the same results as what Migeraine sufferes get and I just happened to be the first to have it done with good results just had a bad outcome witht the infection.

I hope all goes well with the imnplant trial, but i would just ask about the lead at the front of the head as that's where most of the pain is situated (well it is for me).

Saint,

I don't mind being a guinnea pig, as with most meds and treatments someone has to be the first to try it out. As Ben said "If you hadn't done this yourself Matt, I would not have made it there today. Thanks for inspiring the confidence in me to face what was a scary day". The more people that are open to have this treatment done the more research and information we will get for future sufferes who may not need to go through all the pain and suffering that we have gone trough to get this far in the ever ellusive condition know to all of us as CLUSTER HEADACHES.......

As i say my we all be pain free one day.


Matt


Posted in Chronic Pain as a recognised condition on 25 Aug, 2011 - 5:18 pm

Hi Ben,

Is there a reason that they are only using the one lead at the back of the head and not putting one around the front near the Trigeminal Nerve. With the nit that i had i was able to change (as you put it the voltage) on 2 sections of each lead. In otherwords i could turn up the voltage on 2 sections of each lead giving me 4 variable sections in the leads and i could also cahnge the voltage on each lead as a whole with both sections going up or down on the same lead. It's a pitty that you have to wait 6 months after having the trial to get the perm implant done, That's gotto suck................

I have now had the implant removed and was sent home the next day to lesson the chances of getting another infection, i will now have to wait 6 months before i can get it done again, this time he will be bringing in a Neurosurgon, Dermatoligist and Infectious Diseases teams to make sure nothing can go wrong with it.

The Ch's have started back even before the implant was removed so i am now back onto all the meds i was on before the implant was done. i will keep you informed as to how i'm ging and will have to start up my CH diary again so i can keep track of what is going on over the next 6 months in the meantime they are trying to get me a TENS machine to see how i go with that.

Be pain free my children for one day we will all be pain free.

Matt
iconiconiconicon


Posted in Chronic Pain as a recognised condition on 22 Aug, 2011 - 6:50 pm

Hi all,

Just to add a side note to the story, one of the Vinnies volunteers came around on the weekend and asked for a copy of the elec bill which i gave him. He them said that vinnies was not in a position to do anything about the bill but he would like to pay some on the bill for me. I felt embarressed that he was willing to do that for me, he then returned the copy the next day with a note on it saying that it was paid in full, i almost fell over as he had paid over $700.00 on the bill for me and the family. How do you repay someone like that for the kindness and their willingness to help out a total stranger. I know that when i am better again i will be offering my services as a volunteer to Vinnies so that i may be able to help someone out who is less fortunate than me.

My story of bad luck started 9 years ago when my father passed away, my family and me had to pack up from where we were and move back in with my mother as she ahd just been diagnosed with Alzymers/Dementia and needed taking care of. So we did that for 3 years untill my 2nd daughter came along and there wasn't enough room for us all. I still had to go and see my mother every day to make sure that she was taking her meds, then it got to a point where my CH's were getting worse and I couldn't keep doing it so we got a nurse to take over from me. Mean while my brother didn't lift a finger to do anything for her or my Fathers funeral. It got to the stage where i had to make the decision to put my Mother into full time care, By this stage I was at the begining of an 18 month episode.

After trying everyhting that was out there to try and control the CH's i ended up on Endone and Morphine every day just to get a bit of pain free time. this lasted for about 6 months when suddenly the episode just stopped (at last some pian free time) that lasted almost 12 months where inbetween i had other medical conditions taken care of including a heart condition. Then this last episode started last November nad has been constant ever since until they put the stimulator in and i got some pain free time.

In all this time i have managed to work with the exception of the last 6 months, so you can see why it is so hard to ask for help from anyone outside the family. But as i said before it has been the best move i have done letting someone else into my world of CH. My wife has delt with it for the past 10 years and i think now she is at breaking point asking when will this all end so we can go back to normal. At the moment i am back on the Narcotics to try and deal with all the pain every day untill we decide what is going on after the surgery.

So of those of you who read my story please don't be afraid to ask for outside help, it will be the best thing that you can do. Even if it's not for financial help maybe it might be just for someone to talk to, please do it dont try and do it all alone because you will only end up with the CH's getting worse and fall into a deep depression which is sometimes hard to get out of.

Enough of my ranting, tomorrow is the day that i have the implant removed, so i will speak to you all on the other side of this and let you know what wil happen in the future.

Signing off for the next week, let us all be pain free in the near future. Thank you all for all your kind words and thoughts.

Ben, there is a light at the end of the tunnel no matter how bright it may be there is one there.

Matt
Silent Planet


Posted in Chronic Pain as a recognised condition on 20 Aug, 2011 - 1:19 pm

Hi All,

I have hust been listening to the story of Guy fro Darwin via the link that Ben posted from JJJ. I dont know how many of us have had to stop working because of CCH (Chronic Cluster Headaches), in my case i have had to stop working due to CCH and all the problems i have been having. The nurse that has been coming around every day suggested that i speak with a Social Worker to talk about what has been happening. I would highly recommend that anyone in the same position as i am in do this through their loacl GP or through their PMT (Pain Management Team).

They suggested that i speak with the local Salvation Army Office or St Vincent De Pauls office to see if i qualified for any sort of fianacial help with any outstanding bills, due to the fact that i have not worked for the last 6 months and we can't live of my wifes income alone, my wife has had to take on a second job just so we can try to live and give our children the things that they need. I spoke with the nicest lady from Vinnies who said that she would get someone to contact me before i went into hospital. That same night two volenteers from Vinnies came and visited us and sat down and talked with us about my situation.

After talking with them for over an hour they had taken with them my phone and gas bills and said that they would pay them on my behalf and also left us with $100.00 worth of Woolworths gift vouchers. We were so thankfull for their kindness and what they were prepared to do for us.

I am the kind of person that never askes for outside help as i feel that i should be the major income earner for the household, it takes a strong man to put their pride aside and ask for help to try and live a normal life. But in saying that the depression has reached one of it's lowest points at the moment and i couldn't cope with it anymore and it was starting to take it's toll on my family.

I would say that anyone in the same situation as i am in don't try and do it all yourself and don't be affraid to ask for help. There are so many services out there that are prepared to help people who are in the same situation as we are in, i have also be told that i could qualify for a temp disability pension through Centrelink. Now that CCH has be recognised as a form of disability which stops people from holding down a regular job due to the type of pain the we suffer with.

I would like to pubicly thank the Salvo's and Vinnies for the help and support that they are prepared to give to someone in my situation.

Please don't be affraid to ask for help..
Matt
Silent Planet


Posted in Untitled on 18 Aug, 2011 - 9:31 am

Ben,

Please dont give up on the idea of the implant, i happen to be one of the unfortunate one's that appears to get infections easily. I think that you might get some great benifit from the implant. I will try it again after the infection has cleared, I think the more people that give this a try the more information we can gather for everyone else that suffers. The hope is that once thie implant has been in long enough and the sepcialist can gather nore information on how the implant is working then maybe i can come off all the meds and just use the implant to control the CH's. At the moment my infection seem to be travelling down to where the battery is and the pain around the hip area seems to be getting worse. The Ch's seen to be under control at the moment, i am still getting them but they are not as frequent and as intense as they have been, they seem to rate about 2/10 on the pain level. Once the implant has been removed i fear that they will start getting worse again and i will be back into the same old routine again, not looking forward to that again.

I would be interested in hearing what your Neuro has to say about it. As i said please dont be put off about the idea i seem to have been the unlucky one. Good luck with your appoint on Monday.

Matt
Silent Planet


Posted in Untitled on 17 Aug, 2011 - 10:01 am

Hi all,

Thank you for all your kind words over the past 6 months, it was confirmed yesterday that the infection is spreading throughout the implant and it will have to be removed next Tuesday. My blood works have come down to almost normal again but you can see the infection tracking along the leads, they wanted to do it this week but my eldest daughter has her last game of soccer for the season on this Saturday and i wasn't going to miss it. So Dr said he would do me a deal, he will wait till next Tuesday for the removal BUT if where there is a new bit of swelling explodes over the next few days like the main area did then i am to go straight to Emergency and prepare for Emergency surgery to have it taken out as the lead will be exposed and that would just cause more complications.

I am not sure if i can go through this for a third time and yet im not sure i want to go back to the alternative of the daily visits to the Dr and all the other meds that i need to take to get relief. Unfortunately there are no meds that break the pain only the narcotics that give me a few hours relief until the cycle eventually stops on it's own. So far this cycle has been going on since last November and they only seem to be getting longer and the pain is getting more severe. the longest cycle lasted for 18 months so it was great when the implant was suggested and we seemed to be getting good results with it.

Sorry for my ranting just needed to vent a little.

Matt
Silent Planet


Posted in Untitled on 15 Aug, 2011 - 3:46 pm

Hi All,

Off to thespecialist tomorrow for another revue, not too confident at the moment. The pain is increasing in the hip area where the IPG (Battery) is and the small scar where the front lead goes in has a small soft swelling like to one that was on the neck. If there is no improvement in the bloods i can see them wanting to take the implant out, as much as iv"e tried to do everything to try and keep it in and i dont think that they will keep it in.

I will let you all know the outcome of tomorrow's visit to the hospital.

Matt
Silent Planet


Posted in Untitled on 12 Aug, 2011 - 4:49 pm

Hi All,

Thank you for all your support with everything that i am going through. I think the infection might have travelled down the lead and gone into my hip where the battery is. All i know is at the moment there is a fair bit of pain in the hip and that is what happened last time with the infection. With any luck it will settle down over the weekend and i won't need to be admitted to hospital.

Unfortunately i think that i will have to have it removed again as i don't see the infection clearing up over the next 1.5 weeks. There is still some swelling around the wound and there is still an open wound which is still leaking.

At the moment i don't think that i could go through it for a third time with the thought of, will the infection come back again.

Enough of my ranting, I hope that some of you out there are becoming pain free, no matter how long it be for.

Matt
Silent Planet


Posted in Untitled on 09 Aug, 2011 - 7:49 pm

Hi All,

Had good news today, looks like the infection might be going. All my CRP levels in the bloods are coming down. i am able to start driving and it looks like i might be able to start changing my own infusion bottles every day instead of having a nurse come around and spend time with me, there are more needy patients out there who are not able to do things for themselves. My wife and i have done enough needles and looked after wounds to be able to do it ourselves. Still need a nurse once a week to take bloods so the levels can be checked and still need to go to hospital once a week for a review other than that can do the rest myself.

Dr said that i can start driving again so im not stuck inside all the time. If the wounds haven't closed up and stopped ouzing in the next 2 weeks after 4 weeks of antibiotics then they will still have to remove the implant and then try again. Fingers crossed all the infection goes and i dont have to go through all this again.

Matt
Sinent Planet


Posted in Untitled on 06 Aug, 2011 - 11:33 am

Ben,
I know what i have been through sounds a bit scary but in the end if it works it ahs all been worth it. With the infection they say that there is a very small chance of getting one, because i was a smoker it didnt help as that increases the chances of getting an infection 1 in 5 are the odds. I guess i was the 1 in 5 that got the infection. Please don't be put off by what has happened to me over the last 6 months. if being hooked up to antibiotics for the next 3 weeks or 3 months will get rid of the infection and i can save the implant then it is all worth it. There are a lot of restrictions that come with being hooked up, but that is something that i will have to deal with, it is harder on the family at the moment as my wife is the only one earning an income and it gets a bit hard living off the one wage, there are also the restrictions that come with the kids as i am not allowed to drive a car or do anything physical due to the line that is running from my arm into my chest. So i feel for my family because of what they are going through.

Please if anyone has any questions about the implants please feel free to ask me and i will endevor to try and answer all questions.

One hopes and prays that we will all be CH free in the future.

Matt
Silent Planet


Posted in Untitled on 05 Aug, 2011 - 3:52 pm

Hi All,
Well i was in hospital for the past week on some pretty heavy antibiotics and have been released to continue treatment at home. They have inserted a PICC line into my arm which runs near the heart and i am on AB's for the next 3 weeks where a nurse will come around every day to change the infusion bottle with the meds in it.

As the Infectious Disease people said this may not work after the 3 weeks but there is no harm in giving it a go. So in the end if this doesn't work then i still might have to have the implant removed. Alot of the swelling seems to have gone down and there isn't as much stuff coming from the wound, i just have to hope that it all stops over the next 3 weeks. I still have to go to hospital every week for review and bloods will be taken the day before to chack all the levels and that there is no damage being done to my Kiddneys.

Fingers crossed we start to see some good results over the next few weeks.

Matt
Silent Planet


Posted in Untitled on 29 Jul, 2011 - 10:42 am

Hi All,

Saw the specialist today and they are going to admit me back into hospital for IV antibiotic treatment for the next week to see if we can save the implant. Will keep all posted.

Matt


Posted in Untitled on 28 Jul, 2011 - 2:46 pm

Hi All,

It's official there is infection in the implant for the second time, have been on antibiotics for over a week now. Not sure if they are doing anything all i know is that there is a lot of crap coming out of the wounds, as the Dr said better out that in. going to see specialist tomorrow to see what he wants to do, if we keep it in and see if the infection dies down or if he takes it out and tries again later down the track.......

Not happy at the moment.

Matt
Silent Planet


Posted in Untitled on 21 Jul, 2011 - 5:06 pm

Hi All,

Looks like the infection might be back or the body is rejecting the implant. Had bloods done yesterday and the CRP levels which should be around 0.5 - 1.0 are up around 60., the good news is that there are no fevers or feeling sick just pain and swelling around the wounds and wires. The (IPG) Battery which is in the hip is starting to get quite sore. Nothing has travelled around to the front of the head along the wire.

Have been told to get my butt into the Pain Clinic first thing in the morrning, this is the last thing that i needed to happen before i travel to Melbourne on Saturday with the family for a small holiday. If it is rejection i hope that they can give me some imune suppresants so the body stops fighting the implant. If its infection might have to have it taken out again and then i don't know what i will do.

Not only is it hard on me buts it's been very hard on the family over the past 10 years and this has been going on for the last 5 months and i'm starting to get the shits with it as this was my only and last option.......

Matt
Silent Planet


Posted in Cronic sufferer considering Trigeminal clamping.... on 12 Jul, 2011 - 1:23 pm

Hi,

Like Ben i have suffered for over 35 years now taking all the drugs and different procedures out there, i am now being treated at a Pain Management Clinic where i have had a neuro stimulator implanted and this seem to be working. You need to remember that this is not a cure just a different way to treat the CH.

Are you able to get into a Pain Management Clinic in any of the local hospitals near you. I am not sure where exactly you are from , but i think if you speak with your GP or Speacalist they might be able to find a clinic for you.

This treatment is not for everyone but it worth talking about it brfore you go for the destructive method, there are also reports saying that with this type of treatment the nerves can also grow back and cause more problems that what you started with.

This is just another option to consider before you do anything to drastic, it is a long process to go through if you do consider it but i think that it is well worth it. If you read a thread in the medications and treatments section called Lyrica there is more information about the stimulator and what i have been going through for the past 4 months.

Good luck with what ever decission you make and remember there is always a light at the end of the tunnel.

Matt
Silent Planet


Posted in Untitled on 12 Jul, 2011 - 1:09 pm

Hi All,

Had a nasty scare on Sunday night, we thought that the implant was infected again. Was taken to hospital again for tests, all came back clear for any infection. Looks like i twisted the wrong way and pulled on one of the leads which has caused it to bleed and the whole area around the lead has swollen up and travelled along the wire for about 4 inches. Have to now go in for daily check of the lead to make sure it is all ok and that nothing has moved out of place.

I was not looking forward to having the implant removed again and then have to go through the whole process again.

I will keep you all updated on what is happening over the next week.

Hoping we will be all pain free one day.

Matt
Silent Planet


Posted in Untitled on 07 Jul, 2011 - 3:36 pm

Cleo,
I think that you will find that theren have been some studies done in the US about the stimulator being used for CH, you just have to hunt around for them on the net. At the moment all is going to plan and i should get the all clear from my Specialist next week. I hope that all goes well for you and that your specialist should consider the implant as an alternative for the treatment of CH instead of some of the more radical treatments used these days.

Matt
Silent Planet


Posted in Untitled on 01 Jul, 2011 - 4:07 pm

Hi All,

Well another week down and all is going fine, no signs of any infections and everything else is healing up nicely. My cluster seems to on it's way out at the moment which is good news. They seem to be getting further apart, which is good and bad as the implant hasn't been in that long to be able to give it a real good go. Off to see GP next week to get the all clear to resume work which will be hard as i sold my business the other week and now need to go and find a real job and work for someone else (SCARY THOUGHT).

I hope everyone else is getting some relief from their pain.

Matt
Silent Planet


Posted in Untitled on 21 Jun, 2011 - 4:00 pm

Hi All,
Just an update on how things are going, went to the Dr's yesterday to get all the wounds checked out. All is going well 2 weeks after the surgery. there is one wound that is giving a little trouble only when i strech my arme up, so the Doc put me on some Antibiotics just to be on the safe side. Other than that all is going well the CH's have subsided down to a very dull roar in my head, they sometimes flare up thats when the stimulater gets used and it is doing it's job. So far i haven't found that it is restricting my daily activities when i have it on. It's just like a little tingle in the head.

I will keep everyone posted on how things are going.

Be Pain Free Everryone..

Matt
Silent Planet


Posted in Untitled on 20 Jun, 2011 - 11:59 pm

Hi Ross,

Please dont take this the wrong way, we are all here to help and offer what knowlage we have and what we have all been through with this Condition. I have suffered since the age of 8 now 45, so when we ask questions we are only trying to find out more information for others that may be in the same situation as you. We try to find out as much information as possible about everyone on this site, so we can add information to the links on the left of the page.

As i said before I was using up to 50mg a day of endone and then 15mg of morphine to try and get a bit of relief, but there are down sides to using the opiates.
1. There is always the addiction, and trying to come off these drugs is not that easy.
2. Opiates can cause Depression in some people and unless treated things will seem worse.
3. Opiates might give some relief but that is not treating the problem, trying to prevent them is what the Dr's should be looking at.

As you are in Sydney, when you next present at the ER not sure what hospital you attend you might want to see if they can refer you to a Pain Management Clinic. I attend Royal North Shore Hospital Pain Management Clinic. If you can find a GP who has some knowlage about CH's they should be able to refer you to a good Neuro or Pain Clinic. Have a look at the Dr's listed on this site you might be able to get in to see one of them.

Like it was mentioned in a previous post start a diary of when you get them, what you were doing at the time, any foods that you have during the day, how long they lasted for and what meds you took and the pain level from 1 - 10. Take this with you to your GP so you can let them know what is going on.

As i said we are here to help not here to judge you. I hope that you can get the help you need soon.

Matt
Silent Planet


Posted in Untitled on 15 Jun, 2011 - 11:30 am

Hi All,

Ben,
Like you i have gone through the public system but i went in as a private patient only so the hospital can get more money through the private health system. The only discomfort i have had is really the wound pain, once the wires are in there isn't really any other discomfort. I am allowed back to work after 3 weeks as long as there is no heavy lifting involved or any outdoor work. I did lawns and gardening for a living now i have just sold my business and about to look for a new job with less stress involved and having the stimulater in all i have to do is remember to take my control box with me so i can turn it on. Once everything has settled down after 3 months i can lead a normal and productive life, i also play bass guitar and have been able to get straight back into practice as long as i dont put the strap over my neck for the time being.

When they did the implant the battery was put into the area around the top of my butt and the wires are run up near the spine into the back of my nect to the Ocsipital Nerve and then around the side of my head past my ear to the trigeminal nerve in the Forehead. You can feel the wire in the forhead and if you look hard enough you can see it. I can feel it when i turn my head at the moment until it sets in place, if i move my eyebrow around it changes wher the sensation is felt in the head. Quite a strange feeling until you get used to it.

I hope all goes well with you and this little bit of info enlightens you a bit more. As far as i know this has not been done in Australia yet for our condition but there have been people in the US that have had it done with good success rates. You might be able to find out some more info on the web.

I luv being a Guinee Pig for this sort of stuff.

Heather,

Sorry to hear about the Arthritis, hope you can get some relief for that, thank you for your kind words over these past few months. Where wuld this site be if it wans't for you kind words to all the new people who are being diagnosed with this terrible affliction that we all suffer with. I hope that you stay pain free for as long as possible.

Matt
Silent Planet


Posted in Untitled on 14 Jun, 2011 - 3:52 pm

Hi All,

Had all the stiches removed today and all seems to be healing well and the stimulater is doing as it is meant to be. I remember saying this the last time i had this done, fingeres crossed all will stay this way and can return to work in about 3 weeks.

Matt
Silent Planet


Posted in Untitled on 14 Jun, 2011 - 3:49 pm

Hi Ross,

Welcome to the site, sorry that you had to be here. I mean that in a nice way, are you able to give us a little bit more info about yourself. How long have you had CH for, do you take any preventative meds or just meds when the attack starts, do you see any specialists or just a local GP, how Frequent are the attacks?

i usually have up to 50mg Endone and then 15 mg Morphine IM Injections when the pain is really bad. i might be a good answer from the ED's point of view to be giving you this little remidy of pills but it is not one that you want to continue on. You need to see if any of the medications that are listed on this site are good as preventative medications. Have a read of some of the tabs on the left of the page about meds, different treatments and Specialists. You might find that there is some very useful info contained in these pages.

Being from Caringbah do you live in Sydney? If you do and are not already seeing a specialist there are some listed that you might want to get your GP to refer you to or try to get into a good Pain Management Clinic.

Please remember that i am not a Medico and that this is only my opinion and always seek proper Medical Treatment, these are just the ranting of someone who has suffered with CH's for 36 years.

Look forward to reading any further information that you wish to provide us with.

Matt
Silent Planet


Posted in Here I am again on 11 Jun, 2011 - 2:09 pm

Hi Bec,

Sorry to here that you are back due to your CH's starting back again. As Heather said you must be strong after having 2 babies in the last 2 years and copping with CH at the same time. Seeing a Psychologist is not a bad thing there is a program run through Pain Management Clinics called the ADEPT program which helps with managing the pain and also teaches relaxation techniques, which can be very useful. You need to try and sleep and not be worring about when the next attach will start. The more tired you get the worse the attach will be and then it will make it harder to cope with the 2 children. Seeing the Psychologist will also help with any depression that you might get due to the pain and the lack of sleep. Have you seen a Pain Management team through your local hospital? If not maybe your Neuro can refer you to a clinic near you.

I have just had a nerve stimulater implanted to help control the CH's, they have put 2 leads in 1 over the oxcipital nerve and 1 over the trigeminal nerve. After the initial trial i found that it worked in controling the CH and found that i didnt need the drugs to help stop the pain. We will now start to reduce all the preventative meds that i am on to see if it can all be controled with the stimulater alone.

As always I am not a medico and this is only my personal opinion and this is what is working for me at the moment.

Matt
Silent Planet


Posted in Untitled on 11 Jun, 2011 - 1:52 pm

Hi All,

The implant has been done, all is going well at the moment feeling rather sore from all the wounds that have been made. All the stiches and staples come out next Tuesday and then another 3 weeks to recover before going back to work.

I hope everyone has been CH free for a little while, it's nice to be pain free when you can get it.

Matt
Silent Planet


Posted in Untitled on 06 Jun, 2011 - 4:31 pm

Hi All,

Well tomorrow Being Tuesday the 7th June is the big day for the implant to be done for the 2nd time around. With any luck there will be no complications this time. They will be keeping me in for a couple of extra days this time to pump me full of Anti-Biotics to try and prevent any infection.

Speak to you all on the other side when i get home.

May we all be CH free sometime in the near future.

Matt
Silent Planet


Posted in Im At the end and cant keep going on 06 Jun, 2011 - 4:27 pm

Hi Stretch,

i have suffered with CH for around 36 years now and haver quite often thought about ending it. The only thing that keeps me going is my family and what would happen to them if i was no longer around.

The longest episode that i have had to date lasted 18 months straight 24/7, i thought that it would never end. After playing around with my meds and having an injection into one of the nerves to turn it off i finaly had relief.

There are so many medications and different proceedures out there the pain management team should be able to come up with something for you. Make sure that you see someone about the depression as the last thing you need is for the pain and the depression to get the better of you. Once you can get on top of the depression managing the pain becomes a little bit easier.

I am about to have a nerve stimulator implanted for the second time, this might be something that you might want to bring up when you have your appointment with the Pain Management Team. It's not something for everyone but i have found that it works for me in conjunction with my other meds. One thing you don't want to do is got down the Narcotics path as that will only make the depression worse.

As you have probably found out, there is so much information on this site to read about all the different meds and Dr's that actually know what we as CH sufferes go through. Take the time to read as much as you can so when you have your appoint in August you already know what you what to ask.

Always remember we are not Dr's, we are only people that have suffered long enough and hard enough we all know what each other is going through so we are able to offer good advise to each other.

Good luck with your appointment in August, please keep us up to date with how you get on.

Matt
Silent Planet


Posted in Untitled on 28 May, 2011 - 1:38 pm

Hi All,

Well the countdown is on till the next implant is done on the 7th June, still getting CH's on a daily basis. My wife has been sick all week so iv'e told her that she needs to stay away as i don't need to get sick before the Opperation as they wont do it if i'm sick.

Matt
Silent Planet


Posted in Untitled on 26 May, 2011 - 4:14 pm

Hi Lucky,
i too have been on Isoptin 240sr @ 960mg per day pretty much the highest dose that you can go on, it was very sucessful for me for quite some time. i was lucky that it didnt change my BP.
What other meds are you on or have you tried? make sure as with any Meds that if you notice any changes within yourself that you see your GP and report these changes. Good luck and let us know how you get on.


Matt
Silent Planet


Posted in Gabapentin users anyone? - please help! on 23 May, 2011 - 3:38 pm

Ben,

There is a drug called Lyrica (Pregabalin 300MG) it is used if the gabapentin is unsuccessful i have been on it for some time now and have quite some success with it. I had 12mths pain free until this last bout that started in Nov last year. Ask you dr about this one it is quite expencive as it is a private script unless you can get it through yuor hospital where it is subsidised.

Matt
Silent Planet


Posted in Untitled on 08 May, 2011 - 10:13 pm

Sorry this is it

www.poweroveryourpain.com

Matt


Posted in Untitled on 08 May, 2011 - 10:12 pm

Here is a web site that may have some information for us all. I have not looked at it as yet but will do in the next few days.

www.poweroveryour pain.com

I hope that there is some information that may help someone out there.

Matt
Silent Planet


Posted in Taking a breather! on 03 May, 2011 - 10:02 pm

Heather,

I trust and pray that you are enjoying your well earned break from all the hustle and bustle from all the regular things that go on in your life. Ditto from what Ben has Said above.

Look forward to hearing from you when you get back and maybe i will have some good news about the next try with the implant.

Matt
Silent Planet


Posted in Imigran MKII injector reliability issues? on 02 May, 2011 - 3:27 pm

Ben,

have you tried injecting without using the autoinjecter? Where abouts are you doing the injections for a nerve or vein to be hit? i have never experienced any problems with the injectors myself.

if you feel that you would be up to injecting without the autoinjecter ask your Dr to show you the correct places to give these injections. if i remember correctly these injections can be given sub cut (into Stomach just under the skin) thats why needle is so small and are not meant for IM(intra Muscular) but i would double check this with Dr or Chemist. It's been awhile since i have had to use them.

Hope this info helps.

Matt
Silent Planet


Posted in Here we go again on 27 Apr, 2011 - 5:05 pm

Hi Hujrrs

You should have a look under the forum heading Medications and Treatments, you might find some more information on what people have been using to try to control these DEMONS, i have had a nerve stimulator implanted which worked until there was some infection. i will be able to get another one in a few months but i found that it was working and didnt need to add extra drugs to combat this episode.

I have has the CH's for 36 years so i know how you feel.

Regards

Matt
Silent Planet


Posted in Happy Easter on 22 Apr, 2011 - 5:44 pm

I would just llike to wish everyone a Happy and Safe Easter Weekend, i hope that we can all be pain free.iconiconiconiconiconiconiconicon


Posted in exercise as preventative on 20 Apr, 2011 - 2:59 pm

Hi All,

Just a note on the research side of things, I have written to the minister for health and was pretty much fobbed off. I think that we all need to get together and write to the minister and demand that therer be some funding for research in CH's in all states. I am sure that there are Dr;s or Professors out there willing to undertake studies into the unbearable conditions that we all suffer from.

Why is it that they can send Millions of Dollars overseas to help out other countries but they are unwilling to spend the money on a Study into this horrible condition.

If there was a link on this site for a petition that we could all sing and then send a copy to our State Minister for Health and then to the Federal Minister for Health im sure that something might be done for us.

These are only my thoughts on the subject.

Matt
Silent Planet


Posted in Untitled on 20 Apr, 2011 - 2:40 pm

Hi everybody,

As we all know the stimulater was working well and doing the job that it was meant to do. Unfortunately some of the wounds became infected so i have been in hospital for the last 8 days on 3 different antibiotics to get rid of the infection. This also meant that they had to remove the implant at the same time. I now have to wait another 2 months before they will concider putting a new one in, so in the mean time I will have to put up with the headaches.

They say as I have had an infection there is still a risk of getting another infection next time they do the implant, this is something that I will have to deal with when the time comes around.

It was very dissappointing to find out that the whole implant had to be removed as it was doing what it was meant to do and help the CH's.

I look forward to reading any feedback that anybody has.

Have a Happy Easter and a safe one if you are travelling anywhere over the break.

Matt
Silent Planet


Posted in Left or right sided on 11 Apr, 2011 - 4:18 pm

Ampidextrous, CH right side


Posted in Untitled on 08 Apr, 2011 - 12:48 pm

They have made 8 incisions from my head to my butt, they do give you a buzz cut if you want or they can shave around the area where they will cut. The battery sits in my buttox cheek, they either put it there or in women who have a bit of fat under or near their arm pit they can insert it there. There are 2 wires one in my forehead near the trigeminal nerve and the other at the back of neck near the oxcipital nerve, they then run downs near the spine and then across to the top of the butt where the battery is.

You need to be suffering at the time of the trial implant to see if it works for you before they will go ahead with the full implant. I would recommend that anyone who is suffering at the moment speak to their specialist about the implant, but REMEMBER this is not for everyone and that it is all trial and error. I am the first person that i know of who has had the implant done specifically for CH, it had been used for migraine before and is mainly used for people with cronic nerve and lower back pain.

Whatever people decide to do, never go and get the nerve severed as some specialists have suggested. youcould end up worse than what you were before and the nerve can always grow back. This is only what i have been told and might not be the case for some people.

i will keep everyone updated as to how everything is going. Keep safe and keep well there is always a light at the end of the tunnel.

Matt
Silent Planet


Posted in Untitled on 30 Mar, 2011 - 2:37 pm

Hi All,

Well iv'e had the implant done and all is good so far, i just had all the stiches and stapples removed. I have only had to use the stimulator once since leaving hospital and it did what it was meant to and relieved the pain. All the wounds are still sore mailny the one on the forehead as there isn't much tissue there. I am now off work till the 18th April just so the wounds can heal without any complications or infections.

I will keep you all updated as to the progress and any furhter reports that i have. If anyone has any questions please feel free to ask and i will try to give the best answers that i can.

Silent Planet
Matt


Posted in Untitled on 03 Mar, 2011 - 2:27 pm

I now have a date confirmed for the implant to go ahead, 22nd March only 19 more days of pain and then we see what happens when the real one is implanted.iconiconiconicon


Posted in Untitled on 20 Feb, 2011 - 11:45 am

Now the implant is out it has only taken 1.5 days for the pain to return, i hope this next month goes quick so the permenent implant can be done.....icon


Posted in Untitled on 18 Feb, 2011 - 11:50 am

Hi Wrightly,

I have taken Isoptin SR at a dose of 960mg per day, there are some side effects usually with your BP and at that dose you can get light headed for a time until your system is used to the medication. The only thing i can sugest is that if you feel that there is something not right tell your GP asap and always get your BP checked every time you see your GP.

Good Luck with the meds and hope it helps for you.

Matt
Silent Planet


Posted in Leaving for a few days on 18 Feb, 2011 - 11:41 am

Heather,

Hope all goes well with the Neuro today. Have a look at my follow up post on the implants.

Matt
Silent Planet


Posted in Untitled on 18 Feb, 2011 - 11:37 am

Well the trial is now over and i was headache free for the trial period, they have now removed it and have booked me in to have a permenent one implanted. i have to wait about a month for the wounds to heal up then they will go and open up the wound again and do the implant. At the moment i am free of pain not sure how long that will last now the trial is over.

I would recommend that anyone who has been suffering for a long time and has run out of treatment options the you talk to your Dr about the implants and if they can't help get a referal to a Pain Management Clinic in you local hospital. for those who live in the Sydney area and don't mind travelling go to Royal North Shore Hospital Pain Management Clinic, at the moment i am the only patient that they have with Ch and the more that they can get maybe more research can be done.

I would like to know if anyone else has been offered this treatment and been a bit hesitant in trying it out. As i said this was my last option so i was willing to try anything and at the moment this seems to have worked.


Posted in Untitled on 15 Feb, 2011 - 3:24 pm

Had the trial stimulator implanted today, will have to see how it goes over the next 4 days as that how long it will be in for. If all goes well they will book me in for a permenent one in a month or so. fingers crossed that this helps and some more of us CH sufferers can try it out to see if it works for them.......


Posted in Untitled on 10 Feb, 2011 - 9:37 am

Hi All,
Well today i am going to get educated on the Nerve Stimulator Implant ready for a trial one to be done next week, still getting headaches on a daily basis and that's with Lyrica 300mg X 2 Daily. hopefully i will have some more information to tell after today and when the trial one i implanted.

Matt
Silent Planet


Posted in Suffering now on 12 Jan, 2011 - 3:56 pm

icon After almost 12 months free thay started back in late november, have been in Lyrica 300mg twice daily and they seem to have been kept at bay. That was after a Lidnocain infusion over 5 days.
After the return of Ch's we tried a rapid infusion aver 6 hours but have had no sucess with this. We are now talking about stimulater implants which are used for all sorts of nerve pain and even migraine. It has not been used for CH sufferes as yet so i will probably be a guinee pig for this.iconicon After now suffering for 36 years anything has got to better than sitting on butt doing nothing and if it doesn't work that we can take it back out.
To all thoses who suffer may there one day be a defined cure for this terrible condition.

Silent Planet


Posted in Untitled on 12 Jan, 2011 - 3:44 pm

Gaz,

you should try the Pain Management Clinic @ Royal North Shore hospital - Dr charles Brooker - 0299267676
There is also a Neuro called Dr Henry Miller @ Eastwood 0298742210.

Hope these help you out

Matt
Silent Planet


Posted in Untitled on 21 Nov, 2009 - 11:18 am

Hi Gem‚

Sorry to hear that you are another sufferer of CH‚ i have been a sufferer for about 38 years now. Unfortunately there is no cure just relief for different periods of time each person is different depending on the treatment they are on. I hope that the Dr you have found can give you some relief.

Just curious how old would you be?

Good Luck iconiconicon

Matt


Posted in Untitled on 06 Nov, 2009 - 3:44 pm

I have been told by 2 Pain Specalists that they are no good for CH and only good for migraines‚ there is a Prof in Sydney that does them and he is one of the top pain guys and he won't touch anyone with CH. hope this is useful.


Posted in Untitled on 06 Nov, 2009 - 3:40 pm

Thanks for the info‚ i have been told that the nerve stimulators are no good for CH and only used in migraine.

Who is the Pain Specalist that you see and where in NSW are you?


Posted in Untitled on 06 Nov, 2009 - 3:34 pm

I wouldn't be touching it unless it was approved in Australia and there were more studies done on it to show that it worked with CH. There has to be some sort of side effect‚ just none that anyone has mentioned due to the fact that it is not an actual medication just a herbal remidy.


Posted in Untitled on 06 Nov, 2009 - 3:31 pm

Out of hospital now‚ Infusion didn't work. Still getting pain but only around the 1 - 2 level‚ some 6's in there but not many. Started a new medication Pregabalin (Lyrica) 150mg X 2 daily. Any luck this might have an effect‚ going back to see Dr in 2 weeks. I have been asked to take part in a Q&A study with a bunch of Neuro's at the end of Nov. Might get some results with this or some new suggestions.


Posted in Untitled on 01 Nov, 2009 - 7:04 pm

Hi All‚

Well the CH episode has been going for about 4 months now‚ after all the treatments that I have had‚ i am off to hospital for a week for a Lidnicain infussion‚ this has worked in the past for a short time. with any luck i will get some relief for a while.

will let you all know how it goes when i get out.

Matticoniconicon


Posted in Untitled on 10 Oct, 2009 - 12:51 pm

This is a copt of an email that i sent to the Minister for Health Nicola Roxon this is here email address. Nicola.Roxon.MP@aph.gov.au
we should all email her and maybe something might be done.


To Nicola Roxon‚

My name is Matthew Sunn‚ I suffer with a condition known as Cluster Headaches (CH). This condition is mainly a condition suffered
By the male population‚ there are some female sufferers but not many. Unfortunately we are a minority with only 587 member
Registered on a website called Cluster Headaches Australia www.clusterheadaches.com.au please feel free to have a look at the
Site to get an in site as to what we go through on a daily basis.

My question is‚ why are there not any government studies done into this condition and why are some of the medications that are
Used by us so expensive? Some medications that we use are only registered as medications for other conditions so those sufferers
Can get them on the NHS‚ but when they are prescribed for CH people they have to be on a private script as they are not recognized
As a treatment for CH. Some CH sufferers can have an episode of CH that can last up to 12 months and when you have to pay anything
From $40.00 per script‚ there is one medication that contains two (2) injection and that is over $90.00 for the two (2) injections. Is there
Anything that can be done for CH sufferers to try and reduce the cost of medications.

How do we go about getting a study into CH‚ do we find a Doctor willing to undertake a study and apply for funding or is the government willing
To undertake a study on its own. I am sure that all the people who are registered on the above site would be willing to participate in a study to
Try and find a cause or a cure. I have suffered with this condition for over 35 years and my last episode lasted for 18 months. I was in and out of
Hospital and frequented my local G.P on a daily basis.

There are treatments which work but only give temporary relief‚ some of these are trial and error and will not always work. People who suffer with CH
Lead a very hard life with trying to cope on a daily basis with work and their home life. It is also very hard on the families of sufferers.

Please I ask that you look into this condition and also take the time to look at the website and see what we go through.

I look forward to hearing from you in the near future.


Posted in Untitled on 26 Sep, 2009 - 10:04 am

Hi All‚

How many studies are currently being undertaken into what triggers and causes CH. I know that there are always studies being done on Migraines‚ but as we all suffer from CH and this is a completely different type of headache to Migraines.

How do we get the Government to Fund studies into CH‚ they seem willing to fund studies into the most bizzar things but when it comes to a study into something that only a minority of Aussies suffer from there is never enough money to do the research.

The same goes for medications‚ why is it we have medications approved for a number of medical conditions that work well for them and they are on the system for the normal cost of a script. When it comes to CH sufferes‚ we can use the same medication but it is not a known medication for preventing or giving relief for CH. So we have to pay for the meds on private script and some of these meds are not cheap $50.00 or more. When you need to have 2 scripts per month this can be quite expencive over time.

What can we do to get this changed‚ if there were more studies into CH and the meds used to prevent CH maybe we could all get some well earned pain free time.

Would like to hear your thoughts on this.

Very long time sufferer almost 35yrs now.

Matt


Posted in Untitled on 26 Sep, 2009 - 9:44 am

Has anyone tried Gabapenton 300mg‚ i am on 600mg X 3 per day 1800mg in total. I am finding that i am haveing some good days and then some really crap days with the CH lasting any where between 6 - 10 hrs at a time.

I have also been doing some reading on removing the Trigeminal Nerve to see if this stops the CH altogether. Does anyone know of this being an effective proceedure.

As i have said before i have suffered with CH since the age of 8 now 43 so i have tried all and any medication that is o the market and had all the tests that are available. I was under the care of a Neurologist for 15yrs until he turned around one day and said that he has nothing more to offer me and refered me to a pain management specialist‚ with mixed results over the last few years.

Any info would be great.

Matt


Posted in Untitled on 26 Sep, 2009 - 9:37 am

I have tried both meds‚ Indomethacian when first diagnosed with CH you can get some good results unfortunately i also have Gastric Reflux so I had to come off them. Prednislone is a steroid which works weel in high doses 100mg per day‚ the down side is your body starts to retain fluid and you can gain weight very rapidly. you also find that when you start to drop the dose that the CH will return. You also need to start dropping the dose very slowly as this is not a drug that you can just stop.

Hope this helps icon

Matt


Posted in Untitled on 10 Sep, 2009 - 12:54 pm

Hi All‚

My name is Matt‚ i have suffered with CH since i was 8 year old now 43. I have tried all sorts of meds and alternative treatments in the past‚ all to no avail. The longest cycle i have had was 18 months long with constant pain. Only the severity changed most of the time it was just a shadow then all of a sudden it would go to a 9 - 10 on the scale.

Last year i had a Sphenopaletine Gangleon Block which gave me relief for 16 months up untill a few months ago. I had another block done with no success‚ i was meant to go to hospital this week for a Lidnocain/Ketamine infussion. Unfortunately when you are under the care of two pain management specialists you tend to get conflicting information. The Dr that did the block was also going to do the infusion‚ the other Dr started me on a new medication Gabapentin 300mg X 3 a day‚ trying for 6 per day. There was also talk of implanting a Pacemaker in with the leads to run around the front of my head. 1 Dr says it's a good idea the other Dr say's don't touch it. I am also on Oxycontin every day with Endone to be used at the onset of a scorcher.

It's nice to see that there are also other sufferes out there who are in the same boat‚ unfortunately we suffer with a condition that not many people know about or understand what we are going through. It also seems to take it's toll on the families that are around us every day as they seem helpless to be able to do anything for us.

Is there anyone else out there who has this sort of block done before? What sort of success have you had?

I look forward to reading any coments or thoughts that anyone has.

Matt