Showing all posts by "David"
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Posted in What age did you get CH? on 13 Aug, 2010 - 12:01 pm
Hi Alison,
This is terrible news for you and your lad, I started CH when I was 12 and it was so difficult to manage school etc. Like most others it was not properly diagnosed for several years and I had to put up with it.
All I can say is work with your specialist and some less harmfull drugs mat assist.
Good luck
Dave
Posted in Untitled on 29 Apr, 2010 - 12:35 pm
Hi Andy‚
Good to hear you are on the improve....keep up the good work
Dave
Posted in Untitled on 26 Feb, 2010 - 8:32 am
Hi‚
Well fuck me !!!
You obviously dont understand‚ I am saying that some peoples CH are triggered by such things as fumes and smells. I will tell you this is no little sting for a temp time.
I cannot even put fuel in my car or stand next to someone with perfume‚ drive behind a smokey car etc let alone the smell of dencorub.
Sorry for entering into your discussion but as I said it is only my 2 bobs worth and dont bother replying to me as I am not interested given your attitude.
Dave
Posted in Untitled on 25 Feb, 2010 - 10:55 am
Hi Matt and Ange‚
I know I am only throwing in my 2 bobs worth but for me the smell of anything like Dencorub would give me a big 10 headache so its definately not for me but do whatever helps.
good luck
Dave
Posted in Untitled on 23 Feb, 2010 - 10:16 am
Gday Peter‚
I found your article on Prednisolone very interesting‚ during my last cycle I was using up to 125mg of this shithouse drug a day.
The Neuro kept me on it for 6 months as it reduced the pain of my headaches to about a 3. I was becoming suicidal with the pain at its maximum without Prednisolone as I was getting about 6 - 8 headaches a day.
I am in remission at the moment but may ask about other drugs when I am hit again.
For the last 6 or 7 years I use Prednisolone and 240mg of Verapamil a day then slowly move off of the Prednisolone and remain on the Verap for several months then slowly reduce to nothing.
I also use a lot of oxygen and find it teriffic but I must get on it at the onset of a headache as I find it useless once the headache takes hold.
Prednisolone really turns me into a fat bastard LOL.
All the best
David
Posted in Untitled on 23 Feb, 2010 - 9:53 am
Hi Andy‚
I am still real good but your post is very interesting because I have had a type of bone grow in my left nostral ever since I was a small child. I have no air passage on my left side so maybe this could be a cause. (my cluster is always left sided).
keep me posted with any improvements and great to see you back at work.
Good luck
Dave
Posted in Untitled on 22 Feb, 2010 - 11:49 am
Hi Andy‚
Whats going on with you now ?
I just hope you have continued with the inprovement.
Regar4ds
David
Posted in Untitled on 07 Feb, 2010 - 7:34 pm
Hi Andy
I know exactly where you are coming from with doctors as I spend many years on crap like aspalgin as they knew no better.
Our symptoms are very similar so I am interested in your journey so please stay with us and keep me informed of your progress.
All the best
David
Posted in Untitled on 23 Jul, 2009 - 8:49 am
Hi Benny‚
Thanks for posting this posting.
I am out of cycle at the moment but will discuss this with my neuro when the demon returns.
Once again thanks and good luck‚ dont break a leg in the snow...
david
Posted in Untitled on 29 May, 2009 - 1:24 pm
Hi Tania‚
Sorry to hear of your suffering‚
You have said you are going in to hospital for steroid treatment‚ I have not been to hospital for this treatment but have taken large doses of steroid at home for much longer than the recommended time frame.
The steroid I use is Prednisolone and I have taken 125mg daily for up to 4 months then slowly reducing at the same time I take Verapamil 240mg daily.
The side effects are severe -
Feel sick all the time
moon face
constipation
extreme hunger
extreme weight gain (I gained about 15Kg in 6 months)
sore joints
This is just off the top of my head‚ you will also need to have bone density tests if you use steroid for long periods.
It can also bring on diabetes to list just 1 disease.
Try anything and if nothing else works good luck‚ I will do it again because it certainly dulls the pain.
I also use oxygen during the cycle
Regards
David
Posted in Untitled on 13 May, 2009 - 2:25 pm
Hi David‚
I agree that you should be geting some medication for CH.
If you read through the site you will see many articles relating to O2 which is a proven help.
I personally use Prednisolone and Verapamil with terrible side effects but I suggest you see a Neuroligist and get a plan of attack to kill off the devil.
All the best
David
Posted in Untitled on 07 May, 2009 - 3:19 pm
Hi Easy‚
I have only heard of CH in a really painful way but if your Neuro diagnosed yours as CH he probably knows.
The cluster quiz in this site is well worth taking.
Keep us informed and your not alone.
All the best
David
Posted in Untitled on 07 May, 2009 - 8:06 am
Hi Zinzan‚
Yea its a bum of a night but just wait till you get your CPAP machine (if reqd). They are a shit of a thing to sleep with. I still often throw mine off in the early hours as it becomes tangled around my neck etc.
Good luck
David
Posted in Untitled on 01 May, 2009 - 3:19 pm
Hi Bec‚
It sounds terrible but as you know the cycle will end and life will be good again‚
Hang in there and I am thinking of you as will be the other members (your not alone).
Regards
David
Posted in Untitled on 01 May, 2009 - 3:16 pm
Hi Zinzan‚
Have you received your results from your sleep study ?
If so‚ what is happening?
Regards
David
Posted in Untitled on 03 Apr, 2009 - 8:39 am
Hi Zinzan‚
I did snore especially with a couple of drinks but would quite often wake gasping without ever knowing it. This was often seen by my partner and was clearly shown during the sleep study.
I will also add the CPAP machine is a pain in the ass to wear and I am still not used to it but when I get through the entire night with it on I certainly feel better for it the next day.
Good luck with it all
David
Posted in Untitled on 01 Apr, 2009 - 12:30 pm
Hi Zinzan‚
I find your article very interesting as I have had CH for about 35 years and in the last few months have found that I have sleep apnea.
Since using the CPAP machine I have had no sign of CH.
Keep in mind I have been using it for about 4 months and may have not come into CH cycle in this time (I cannot tell as CH is so random for me).
I am interested in hearing from other CH sufferers who also use a CPAP machine to help with sleep disorder.
The machine opens airways during your sleep to keep a continuous airflow going in effect keeping oxygen in the system and I think we all now know the advantages of oxygen for treating CH
Regards
David
Posted in Untitled on 02 Mar, 2009 - 1:46 pm
Hi Kae‚
Believe me I know what you are going through and all I can say is hang in there‚ there is light at the end of the tunnel.
Keep us informes about your results and progress.
All the best
David
Posted in Untitled on 20 Feb, 2009 - 9:51 am
Hi‚
Sounds great to me‚
Keep us posted on your progress and I may join you.
Imagine kicking CH‚ loosing weight and becoming fitter ????
All the best
David
Posted in Untitled on 03 Feb, 2009 - 10:04 am
Hi Slipper and welcome‚
I and we all know exactly what you are going through.
I also use Prednisolone but I start aroung 100mg and gradually ween down. It is very important with this drug to not stop using it suddenly‚ but I am sure your doctor would have explained this and its side effects.
I use Prednisolone in conjunction with Verapamil‚ maybe this is worth a try or at least worth discussing with the GP.
All the best
David
Posted in Untitled on 03 Feb, 2009 - 8:33 am
Hi Kaarin‚
Welcome to the club
I am always interested in finding out more from the SA sufferers in regards to what doctors you have seen that have experience in CH.
I am yet to find a decent GP in Adelaide but have a good Neuro. The problem is that when a cycle comes I have to wait up to a month to see the Neuro.
Let me know if you have had any success with doctors and I am keen on following your progress.
David
Posted in Untitled on 02 Feb, 2009 - 12:56 pm
Hi Gus‚
My Neuro did briefly discuss surgery for me about 12 months ago‚ due to my state at the time‚ I remember little about it except it would leave my left side of my face (CH side) perminantly numb or at least lose most of the feeling from that side.
This is all I can remember but surgery has definately been discussed.
Hang in there
David
Posted in Untitled on 28 Jan, 2009 - 9:29 am
Hi Pringle‚
Good to have a doctor on side as you might be able to assist with your contacts etc.
I and we all understand your situation with working during a CH cycle and it is tough.
Anyway welcome and we are all here to support each other.
David
Posted in Untitled on 22 Jan, 2009 - 2:41 pm
Hi everyone‚
I was given some injections to take home several years ago by a doctor (samples I assume) but was unable to bring myself around to using them when the pain started.
I assume they are available with a script but not really sure
David
Posted in Untitled on 17 Dec, 2008 - 10:31 am
Hi Zinzan‚
Good to hear from you and good luck with your cycle.(hang in there)
I have had CH for 35 years and every one is in the left side. Never on the right.
I have also broken many bones playing hockey all my life including a few ribs in 1 hit. As far as pain goes this is a walk in the park compared to a decent CH.
I once seen a documentary years ago where they interviewed an ambulance driver (paramedic) who once asked what was the most pain you have ever seen anyone in and he immediately replied a "a guy we picked up having a cluster headache".
Anyway all the best to you and all the forum members.
Regards
David
Posted in Untitled on 10 Dec, 2008 - 10:19 am
Hi everyone‚
In regards to symptoms I can also be light sensative and I definately suffer CH.
I agree entirely with Wayne that we are here to help each other and to add our opinions and experiences. Anyone suffering from CH knows it is not a walk in the park and from my experience will be willing to try anything to relieve the pain.
I 1st tried O2 about 15 years ago with no success but have had good results from O2 over the last few years with the knowledge of the reqd‚ pressure.
I agree with Barry that if anyone has not tried O2‚ it is about time you did as the general feeling from this site shows a fair degree of success.
Anyway I am in recession with a constant dull feeling in my left temple just ready to explode so I am always prepared.
Keep the site positive
Regards to all
David
Posted in Untitled on 01 Dec, 2008 - 2:40 pm
Hi Bazz‚
for what its worth I have a fair idea what your going through.
I get a cycle at least once every year lasting anywhere between 3 and 9 months.
I heavily medicate during this period and it has enormous effects on me. (Prednisolone and Verapamil)
Anyway hang in there and never give up tryng different things as you never know what may help.
Best regards
David
Posted in Untitled on 14 Nov, 2008 - 9:30 am
Hi Kerrie‚
No‚ I have never heard of it.
What do you know about it ?
Regards
David
Posted in Untitled on 14 Nov, 2008 - 9:28 am
Hi Wayne‚
I have been in remission for a couple of months now and can drink and do as I please without any effect.
I am just throwing in my opinion which is that when I stopped my medication which was a mix of Verapamil and Prednisolone I did this over about 6 - 8 weeks with a slow reduction each 4 days.
I know that you should not stop Verapamil suddenly. I dont know if you did is suddenly but my Neurologist said progressively reduce in small increments and if you get a shadow of pain stay on that amount for a week and monitor your progres‚ you may need to increase a bit or if you are good‚ decrease.
I wish you well
David
Posted in Untitled on 20 Oct, 2008 - 12:28 pm
Hi Steven‚
I have suffered only daytime until the last 2 bouts‚ now I get them both day and night.
I find the 02 excellent providing you get on it as the headache starts otherwise its useless for me.
Once the pain is gone‚ I can hardly remember whats happened and often go to sleep but that can quite often bring anothe on ???
Anyway I am all good at the moment
Keep up the good work
David
Posted in Untitled on 14 Oct, 2008 - 2:53 pm
Hi Lea‚
Sorry to hear about your return to CH.
Great thet you were able to tell your new employer about CH‚ I tried to hide it which as you know is near impossible.
Have you seen a Neurologist as mine told me such things as Aspalgen are useless and I did try them to no avail.
Anyway we are all different and I wish you the best with what works for you.
David
Posted in Untitled on 07 Oct, 2008 - 12:30 pm
Hi Kerry‚
I rarely even think of the CH now.
I just try to keep in from my mind as it is gone forever ?????
Yea the prednisolone and Verapamil really took its toll on me last time. I think because I was on the large dose for extended time.
If you read the comments from Steven he is on massive doses and stays on it. He must be tougher than us .
Keep CH free and good to hear from you
David
Posted in Untitled on 07 Oct, 2008 - 12:25 pm
Thanks all for your input.
Kerry‚
Good to hear your going well.
Keep up the good work
David
Posted in Untitled on 07 Oct, 2008 - 12:23 pm
Hi again‚
I have been on holidays and just returned.
Hope things are under control.
You seem to take a LOT of medication‚ I was on similar doses for 6 months straight and it really knocked me around.
Anyway good luck and do what works
David
Posted in Untitled on 24 Sep, 2008 - 3:25 pm
Hi everyone
Thanks for your replies and experiences.
Good luck to you all
David
Posted in Untitled on 24 Sep, 2008 - 3:23 pm
Hi Keri‚
Hows it all going ? are you free from the CH or still plugging away ?
What medications are you taking or have you taken.
I am off of all medications and I must say that this time the Prednisolone combined with Verapamil was a real test for me as I was really unwell but at least free of pain most of the time.
Now I am free.
Regards
David
Posted in Untitled on 24 Sep, 2008 - 3:18 pm
Hi Shensin‚
I have never heard of this treatment but some of the medications mentioned on this site have proven success in varying degrees so I sugest your friend sees a Neurologist and gets some advice before trying these remidies.
This is my opinion as I fiddled around with some obscure methods for about 20 years before seeing a Neuro‚ and seeing one and getting onto some medication has made my CH something that I can stand‚ of course the side effects can be a real pain but thats the way it is.
Best of luck
David
Posted in Untitled on 24 Sep, 2008 - 3:09 pm
Hi Steven‚
Sorry to hear that your CH has returned
I am just asking have you been taking 750mg of lithium‚ 600mg of epillium and 720mg of veracaps for this period of 6 yrs or was this just an initial dosage.
If it is initial only have you been taking any preventative medication since the last CH bout ?
Best regards
David
Posted in Untitled on 22 Sep, 2008 - 1:34 pm
Hi everyone‚
I am currently in remission and doing just fine.
I was talking to a doctor (GP) today who asked me about CH.
He then recommended I try Noten which is a blood pressure medication. Evidently you take 2 per day and it works as a preventative medication.
I am not prepared to use this yet‚ and am asking has anyone heard of or tried Noten for CH.
Best regards
David
Posted in Untitled on 19 Aug, 2008 - 10:06 am
Hi everyone
I have been watching this site several times everyday and am assuming that the lack of activity is linked with the lack of people with CH at the moment. Of course this is only an assumption but it may fall inline with the cold weather ?????
Regards
David
Posted in Untitled on 29 Jul, 2008 - 2:23 pm
Hi Saintpeter and Kate‚
Thanks for your opinions.
Regards
David
Posted in Untitled on 29 Jul, 2008 - 2:22 pm
Hi Kate‚
I am 46 and have had CH since being in school I have not grown out of mine and must say that the last CH cycle I had was probably the worst I have ever had for becoming sick from excessive use of Prednisolone and Verapamil.
I find the oxygen very useful but only at the onset of a headache.
For me I still thing big doses of Prednisolone at the onset of CH then slowly ween your way off while taking Verapamil is the best cure for CH. The oxygen then can be used for the odd slip up.
Everyone seems to have their own cures or no cures and I am damn sure that my last CH was my worst as I got out of control with medications.
I am free from the Demon at the moment
Regards
David
Posted in Untitled on 28 Jul, 2008 - 8:30 am
Hi everyone‚
I have just finished my cycle and am headache free.
I was just wondering if anyone in the cold states (SA or VIC) currently is in a CH cycle.
I find that I am generally pretty good in the winter.
Does anyone else find that the summer is worse than winter ?
I relate this to the fact that cold air helps with a headache‚
Regards
David
Posted in Untitled on 14 Jul, 2008 - 1:03 pm
Hi everyone‚
I have been headache free for a couple of weeks now and have lowered medication to a comfortable level.
No more Prednisolone (this is a bastard of a medication) and only 180mg of Verapamil a day.
I am feeling human again so my life is underway again.
All the best to you all
David
Posted in Untitled on 30 Jun, 2008 - 8:01 am
Hi Kerry‚
Our cycles seem to be about the same at the moment as we are both on the home straight to getting our lives back.
I have reduced Prednisolone to 12.5mg and Verapamil to 180mg.
I intend to reduce Prednisolone to about 6mg tomorrow then after 4 days to zero. I will maintain the 180mg of Verapamil until I am sure its over.
By the way happy bday for the other week.
I have been reading that you do not have much success with the oxygen which is a shame as relief is hard to find.
Anyway good to hear that you are going well and keep up the good work
David
Posted in Untitled on 23 Jun, 2008 - 8:19 am
Hi Kerry‚
How are you getting along with the Verapamil and other medications.
I have been able to reduce my Verapamil to 180mg / day and Prednisolone to 25mg/day.
I am feeling heaps better and am able to cope day to day without much sickness.
And most importantly the biggest headache I have had would be a No.1.
David
Posted in Untitled on 16 Jun, 2008 - 8:17 am
Hi Blondie‚
Yes I agree with lil fuzzy‚ see your doctor and suggest you may be getting Cluster Headaches.
You will need to have your condition PROPERLY diognised before you can get it under control.
Please tell us more about your progress and your current symptons.
David
Posted in Untitled on 16 Jun, 2008 - 8:13 am
Hi Geoff‚
Good to hear from you‚
Hope the Verapomil is helping and good to hear you are getting relief.
All the best
David
Posted in Untitled on 16 Jun, 2008 - 8:12 am
Hi everyone‚
I have not had a proper headache for about 2 weeks but still constantly feel the shadow that they are still knocking.
The medication is keeping them at bay but the side effects are sickening.
I have now reduced to 50mg Prednisolone and only 240mg Verapamil / day.
I am feeling confident that I am ending the cycle of CH and will continue to reduce medication slowly.
Just hang in there all you sufferers as remission is just around the corner
David
Posted in Untitled on 12 Jun, 2008 - 2:23 pm
Hi Barry and everyone else‚
I managed to track this non-rebreather mask down.
I bought it online from a company named mediquipedirect.com.au
The cost is $5.36 and the company is in Victoria so for postage was a further $17.35 to Adelaide.
Just thought I would let you know if anyone else wanted one.
David
Posted in Untitled on 12 Jun, 2008 - 12:26 pm
Barry‚
Thanks for that information‚
I will try to get one of these as I can see the benefits from it over the standard mask.
Thanks and Regards
David
Posted in Untitled on 10 Jun, 2008 - 1:33 pm
Barry‚
Can you tell me a bit more about the bag you are using for the oxygen.
I currently use a mask but the leakage is huge.
Your input will be appreciated.
David
Posted in Untitled on 10 Jun, 2008 - 8:03 am
Hi keriblu‚
Sorry to hear of your condition.
I am going along about the same‚ I have been unable to work due to the medications making me so sick.
My stomach seems to be swelling and I am in constant pain so I have been gradually reducing my Verapamil and Prednisolone.
I am at work today and I will have to see how I go.
I appear to be on top of the headaches and have not had 1 for a week but I feel the shadow that they are still there so I am being careful with verapamil reduction.
I have never had the hot flushes from this medication so I hope this doesnt come aswell.
I am about to look up the topomax that you have mentioned.
My Neurologist said my next step is to go onto a medication called Lithium which he has said is a very last resort.
Keep hanging in there
David
Posted in Untitled on 07 Jun, 2008 - 10:54 am
Hi Keriblu‚
How are you getting along ?
David
Posted in Untitled on 07 Jun, 2008 - 10:50 am
Hi Roger‚
Yea I am keeping the pain away but the medication has now made me so sick that I cannot really function properly.
In fact Thursday and Friday I could not drag myself out of bed so I seen the doctor who has recommended I reduce medication gradually and slowly which I am doing.
If its not 1 thing its another ???
Thanks for your concern
David
Posted in Untitled on 02 Jun, 2008 - 1:14 pm
Well BC
God has certainly not fixed my CH but the medication is doing its job‚ so to reply to your comments made to me...maybe stop wasting your and my time with your religious crap.
David
Posted in Untitled on 02 Jun, 2008 - 10:46 am
Hi everyone‚
I have seen the Neurologist and have upped the Prednisolone to 75mg and the Verapamil to 540mg / day.
I have not had a headache for a week but certainly do have a shadow of pain over me. (hope ypu know what I mean as it is hard to explain but you know that if you stop medication WHAM !).
I am quite swollen up all over from 4 - 5 months on Prednisolone but I am improving.
In fact I havent even had a shot on the O2 for about 5-6 days.
It seems to be working for me.
I hope you are all finding your own relief
Dave
Posted in Untitled on 30 May, 2008 - 8:15 am
Hi Keriblu‚
Great news that you are getting relief and off of the steroid.
I hope to be at that stage in 2 weeks when I next see the neurologist.
My CHs have certainly eased but I know they are still there waiting to hit.
I have not had a ecg and really knew nothing of it‚ I will bring it up with the doctor when I see him next (thanks for that).
So at this stage I am still on 540mg Verapamil and 75mg Prednisolone.
I am dying to start reducing the Prednisolone as I constantly feel ill as well as other side effects but it sure helps with the CHs.
All the best and keep the improvements going.
David
Posted in Untitled on 28 May, 2008 - 9:24 am
Hi Keriblu‚
I am in the same situation as you.
I have been taking 50 mg of Prednisolone now for 4 months and 360mg of Verapamil and have not got rid of the headaches during the night‚ I am ok during the day with occasional use of oxygen when one first comes on.
I seen the Neurologist yesterday and he has upped me to 75mg of Prednisolone and 180mg of Verapamil 3 times a day (540mg).
I am to stay on this for 2 weeks then ween off of the Prednisolone under his supervision.
Of course the side effects of the Prednisolone are a disaster but it keeps me functioning and pain free (or nearly).
My suger has increased‚ my weight has increased‚ I have moon face and my vision is not normal but I am still functioning. If you are on the Prednisolone for extended periods you should also have a bone density scan to keep an eye on your bones.
I am starting to feel better after 1 day of increases and feel confident I will have the bastard of a thing knocked over within a week from now.
Please keep me informed of your progress and I will also do the same.
Good Luck
David
Posted in Untitled on 20 May, 2008 - 2:17 pm
Hi‚
I am suffering out of control at the moment.
I have had a couple of extreme headaches all weekend.
I just wake up with the bastards and its generally too late for the 02 to work for me.
I am booked in to see the Neurologist on Wed week but god knows what he can do for me.
I have not tried the imigran this time around but had no success previously‚ I will try anything but I am already on one hell of a coctail of drugs that are really knocking me around.
Its at the stage where I am getting about 3 hours of sleep a day and am far too scared to go to sleep
Dave
Posted in Untitled on 16 May, 2008 - 9:56 am
Hi Geoff‚
Sorry to hear of the pain you are in.
I am currently in a CH period myself and have been for too long.
I take Prednisolone‚ Verapomil as preventative measures and then I use O2 when a headache is coming on.
I find this a good mix although not fool proof as I am still in some degree of pain on a daily basis.
Also be warned that the Prednisolone should be short term only‚ I have been on it too long and am now blown up with fluid and have to have a bone density examination next week‚ so be warned of the many side effects.
I hope you get relief.
David
Posted in Untitled on 05 May, 2008 - 12:48 pm
Hi‚
I have posted several messages on this site and have always had my CH under fair control with the use of Prednisoline‚ Varapamil and oxygen.
I have now been in a cycle for about 3-4 months. (longer than normal) and have it out of control.
I am getting CH everytime I lie down.
I am woken 3-4 times a night in absolute pain and the only relief it to get in the shower for about 10-15 minutes with high pressure and extreme heat belting down on the left forhead.
Bloody hell I am going through a really bad patch so I might go see the Neurologist again as I have been upping my medications to an unacceptable level and only getting worse.
Anyway we all know what its like
Regards
David
Posted in Untitled on 05 May, 2008 - 12:41 pm
Hi‚
I find the fumes and light are certainly triggers for me.
To my knowledge CH do not throb they are a continual piercing pain.
To me it sounds more like migrain‚ thats my opinion.
Regards
David
Posted in Untitled on 30 Apr, 2008 - 8:53 am
Hi‚
I underwent acupuncture 2 years ago.
I had 5 sessions each for 45 minutes every week for 2 months.
The doctor was very confident that it would cure it straight away but it had no effect. For me it was a complete waste of time and money.
I can even remember walking out of the surgery with an extreme headache and being unable to drive home.
David
Posted in Untitled on 29 Apr, 2008 - 2:19 pm
Hi Leanne‚
Hope all is going a bit better now.
I am a big believer in Prednisolone and 02 but do it all under professional medical supervision.
All the best to you and bubs
David
Posted in Untitled on 29 Apr, 2008 - 2:12 pm
Hi‚
Im not getting involved in all this.
But I will say that if you are a genuine CH sufferer you would not be carrying on about the religious side and would be more concerned with doing away with what I regard as the ultimate pain.
David
Posted in Untitled on 28 Apr, 2008 - 9:01 am
Firstly‚ thanks for posting this article Barry.
Secondly‚
I use oxygen during my CH cycle which I am currently in and find it useful but only if the headache is just beginning.
I have never been to a hospital for it as I hire the equipment from Oxycare in Adelaide. I initially got a letter from the doctor then it was accesable at all times.
I think it would be better to heve it on hand at all times because for me a typical headache will only last between 45 and 60 minutes but of course several (up to 8) times a day.So going to get it each time would be useless.
Regards
David
Posted in Remission? on 24 Apr, 2008 - 11:20 am
keep your fingers crossed
David
Posted in Remission? on 18 Apr, 2008 - 11:40 am
Hi‚
I certainly have never gone as long as your partner‚ in fact the longest period I have had of normal life would be 12 - 14 months.
My CH cycle then lasts for about 3 months although I am now in a cycle and have been for 3 months with no relief as yet (ouch!!)
All the best
David
Posted in Untitled on 04 Apr, 2008 - 1:58 pm
Hi Barry‚
I do have relative success with oxygen but only useful as the headache is coming on. If I have pain at full strength it just doesnt work for me.
I even carry a small cylinder in my car.
The Redbull is an interesting theory and I will try it as I have nothing to lose.
I will also prop my bed up a bit and try that as these remidies are cheap and harmless.
As you would have read I find Prednisolone a wonder drug for keeping them away and when I do get one it is generally at a strength that you can handle.
I really appreciate your contact
Regards
David
Posted in Untitled on 31 Mar, 2008 - 11:18 am
Hi Matt‚
I would suggest you see a nuerologist with CH experience if you can find one in your area.
I found that oxygen is only good to use immediately before the headache has actually hit.
I found that Prednisolone has been the wonder drug for me and is a preventitive medication not a pain killer.
You take it regularly as prescribed and the CH will be minimised.
For me I would suffer heaps of 8-10 attacks in a day now I have about 3 attacks with a pain level of about 2.
As you will know we would all do anything for that.
Best of luck with the beast
David
Posted in Untitled on 31 Mar, 2008 - 9:15 am
Hi‚
I am not a doctor but a long term (33yrs) CH sufferer.
I have tried a lot of different medications etc.
About 4 years ago I visited a neurologist who suggested I use Verapamil (240 mg / day) and Prednisolone (100mg / day) along with high flow oxygen.
It has been a miracle for me.
The Verapamil I take once a day.
The prednisolone I take 3 times a day and continually reduce the amount.
The oxygen is used as needed.
Prednisolone (Panafcortelone)
Start 100mg for 1 week
Then 75mg for a week
Then 50mg for a week
Then 37.5mg for a week.
Then 50 mg for a week etc
You will know by the pain or frequency of the headache when you can no longer reduce the amount.
I am currently taking 50mg / day and am getting headaches about 3 times a day with a severity of about 2.
Without this medication I would normally be getting about 5 - 10 attacks a day with a high severity (suicidal)
I hopefully will have weened the Prednisolone down to nothing in the next 6 weeks as it is not a great medication for long term use.
For this bout of CH I have not been using Verapamil and found my control to be similar to when I used it.
I do take panadol forte at bed time as I have been waking wit an odd attack but only in the low pain range.
I have found high flow oxygen useful if you know an attack is coming on but useless once the headache has set in.
For me the Prednisolone has been a life saver and I am still able to work daily as before this everyting was a struggle.
Feel free to sak me any questions as I am a long term CH sufferer and am more than happy to share my experiences.
Good luck
David
Posted in Untitled on 31 Mar, 2008 - 8:49 am
Hi my name is David and I live in South OZ.
I have been suffering CH for about 33 years on a regular but random basis.
I have had them in all times of the year may it be winter‚ spring‚ autumn or summer.
I have had all types of medication‚ massage‚ trigger point therapy‚ etc etc.
In the last 2 years I have the medication I have been needing for years which reduces the frequency and severity of the CH to a manageable degree.
My CH has only occurred in the day time for all the years but in the current CH period that I am currently in I am getting them during my sleep which is hard to control with oxygen as I find oxygen useless unless it is used when the headache is coming on. If I leave it till I have the headache it is too late and I must suffer the pain.
Anyway this it just to introduce myself and thats me.
David
Age 46