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Posted in Growing out of Cluster Headaches on 07 Jul, 2015 - 10:40 pm

HI Bruce, I'm not willing to say that you can grow out of CH ... BUT..
I have suffered since my early 20s and for the first 8 years I was chronic.
In 1996 I had my first remission and then started getting CHs every year starting in July-August and lasting for 3-4 months. this continued until 2006 then in 2007 for the first time I skipped a year. They returned in 2008 and I have to say that they did seem to be worse than I had ever had before.
The upside followed after my 2008 cycle when I went until July 2011 without another cycle.
Again in 2011 the intensity seemed to go to another level but that was my last cycle.
It has now been 4 years since my last cycle started and come November it will be 4 years since I had my last cluster headache.
I'm not prepared to say that I have grown out of them but I remain hopeful.
I hope this is good news for you and all sufferers

PS not sure if this has any relevance at all but I was a smoker for 30 years and stopped in 2010, bought a bike (and became a full on MAMIL) and I am lighter and fitter now that I have been at any stage in my life.

Posted in Ride for Awareness on 24 Jan, 2013 - 8:02 am

Is there still any interest in this
I know I'm still keen if somethig can be set in place


Posted in Heyup on 24 Jan, 2013 - 7:53 am

Hi Charlie
Interesting informatin re the drinking lots of water, which I do
When in cycle I have found that considerable water intake means a couple of trips to the toilet in the first 2-3 hours of going to bed preventing the 1-2 hour CH onset that I normally suffer after gettting to sleep.
If the first waking to go to the toilet is more than an hour after I go to sleep then a nasty CH is the common result but if i wake and get up in first hour and then sagain within 2 hours I can make it through the night sometimes without a CH

Posted in Cannabis (Marijuana) on 06 Oct, 2012 - 10:55 pm

FWIW I tried it some years ago and will never go there again
It had the same effect on me as alcohol, a severe CH within 15 mins
Stupidly I tried a second tyime with the same result.

Posted in Cluster Headaches Australia foundation and Ride for Awareness. on 16 Sep, 2012 - 8:19 pm

Hi Matt.
Im still keen for to do the ride but it seemed outside of the 2 of us there was few who could really commit anything too it, and I think as it stood I was doing the majority of the ride on my own which does not bother me but i think one out would sell the idea well short of where it needs to be.
As I'm based in country Vic I can't get together but I will certainly be available if required online.
I'm curently riding about 500kms a week so the training is well on track and I have a big few days from November 1st to November 4th, when along with a group of cycling mates we are going to take on Mt Hotham, Falls Creek, Mt Buffalo and Dinner plain on the 4 days .... Approximately 8500m of altitude gain for the four mountains combined.
Total distance for the 4 days will be about 550kms
Your welcome to join us !!!!!!


Posted in Roger Roger Roger on 13 Jul, 2012 - 9:13 am

Hi Peter
There is a lot of stirrer in me ...LOL
Nothing (or very little) I say should be taken too seriously.
It was the only way to survive in my family growing up.
I agree with what you say in regards to the perception versus the reality.
I find that being an environmentally aware person as I consider myself to be, means that I try and do the little things such as solar power and hot water at home and driving diesel cars and this will all help.
I am a ture climate change believer. Our climate has never stopped changing but I'm still yet to be convinced that we (society) are actually contributing too it .... But I would rather take precautions now than wait until it is confirmed ...and too late.
Just managing to reduce the levels of pollution in the air should be motivation enough for people to make change because of the health benefits it offers.
Sadly, there are way way way to many people that think it is not their problem
Lecture over !!!

Cheers Chris

Posted in Roger Roger Roger on 12 Jul, 2012 - 10:39 am

Am I just being pedantic or is this rather contradictory???

"I drive a 2010 prius and think caring for the environment is paramount. I'll be travelling to space via Virgin Galactic in the next 10 years!! woohoo!"........ As per Rogers profile

Not that I'm judging !!!!

FWIW I will be very jealous if you get to take that flight and I drive a turbo diesel Ford Mondeo for the same reason you have the Prius

I wonder how environmentally aware CH sufferers are, do we have a higher rate of earthly considerations than the general public ???? LOL


Posted in This worked for me!Hope it does for you too! on 12 Jul, 2012 - 8:08 am

Hi Heather
Keep us informed about the results from the botox.
I have read reports that in some cases it almost stops CH in its tracks but for others it has little effect at all.
I certainly hope it has works well for you.
You have been red for a long time now ... I truely feel your pain
I'm close to my usual start time for another cycle but I have been very lucky and skipped a couple of years in recent times so I'm hoping the trend continues.


Posted in This worked for me!Hope it does for you too! on 11 Jul, 2012 - 10:34 am

Dusker said:
"Just quick comment re prednisolone.
It really is a wonder drug, just needs to be taken with the knowledge of not stopping quickly. This allows your own body to resume it's responsibility of producing it for itself.
I would not be put off of by any possible side effects if I was in an acute stage again. In my chronic stage has no effect.

Hi Heather,
My old GP who fist put me on Pred when I was living in Melbourne told me that in short term use (under about 2-3 weeks) your system does not stop producing cortisole so you can actually stop using fairly rapidly with no problems
My usage is normally only over a 10 day period but at high doses with a rapid reduction.
100mg 3days 75mg 3 days 50 mg 2 days and 25mg 2 days and then stop.
I have on a couple of ocassions had to repeat the same regime.
When I start at the 100mg the CHs normally stop within 24 hours and I can then go into periods of persistent shadowing that can last for 1-2 weeks and peak at about a 3-4 ... not enough to stop me sleeping and functioning... but this is far better than several 7+ CHs a day.


Posted in This worked for me!Hope it does for you too! on 10 Jul, 2012 - 3:37 pm

eruption said:
"Hi Chris,

. I havent come across or heard about prednisolone and having read up on it, I would probably steer clear of it based on its side effects.


Hi Eruption

Most of the side effects listed for prednisolone are associated with long term use (except the weight gain) and the way I find it effective is in short sharp but also large doses but only over a 10 day period.

You would never get a GP to suggest you take it the way I do .. It took a bit of experimentation....


Posted in Fitness levels on 08 Jul, 2012 - 10:46 pm

Hi all
Just wondering if anyone is aware if there is any direct correlation in regards to how fitness and general well being such as diet and weight can reduce the severity of cycles.
If I follow past years then I am getting close to my start time for a new cycle.
This time thanks to this website I feel I am more prepared than I have ever been from a mental preperation perspective.
I recall when I was younger and started getting CHs at about 22 years of age, I was playing football (Aussie rules) and was in pretty good shape physically... I was probably abusing things like alchol sleep patterns and dietary intake in the way most 22 year olds would, and was also a smoker back then.
As the years went on my fitness and general health both waned as it does for most of us, and as my cycleds came around they seemed to get more evere with my reducing physical condition.
I stopped smoking some years ago and started riding a bike and last year after my latest CH cycle I decided it was time to lose a bit of weight and get as fit as I could, something I have worked really hard on since my last cycle ended.
What I was wondering is, is there any evidence that anyone has heard of that says that the severity of cycles can be improved with overall fitness and a good diet???
Not just from a good health perspective but from a scientific one.
Any feedback would be great.


Posted in This worked for me!Hope it does for you too! on 06 Jul, 2012 - 4:26 pm

Hi eruption
Good to hear from you
Not good to see that you are in red.
It is interesting that you had a good experience with cocaine as my experience was horrendous, proving that one thing can work for one person and the same thing can be useless for another
As I previously said I would recommend against it but my main form of relief, which is prednisolone, is something that a lot on here would not use because of the side effects it has. But for me it is a real life saver.
Imigran on the other hand has never really worked for me.
I guess for all of us anything that offers relief is fantastic, and no doubt when in cycle we are all willing to try things that we would not normally consider.

Cheers Chris

Posted in This worked for me!Hope it does for you too! on 03 Jul, 2012 - 8:23 am

Hi Suicidal
I have also had the nasty rebound headaches after using imigran injections and they are small time compared with the CH that followed the cocaine.
It was the length of time also that made that particular headache so bad as it was unrelenting for 6 hours ... It was the closest I have ever come to ending it all by a long way ....I don't ever want to go there again !!!
I would advise against trying cocaine to anyone if what I went through after is a true indication of how CH sufferers react to it.

Posted in on 01 Jul, 2012 - 10:20 pm

Hi Jasmine

I have no evidence to suggest there is any correlation between head trauma and CH.

But in my case I fractured my skull in a pushbike accident whe I was 11 years old and then had a concussion and damaged my neck in a collision in a game of AFL when I was 22 that resulted in a 2 day stay in hospital and a week in a neck brace
3-4 weeks later I started getting CHs.
I did read somewhere some time ago that in a survey of sufferers of CH that over 45% had had severe head trauma at some stage in their life prior to CHs starting .. Often many years before

Posted in This worked for me!Hope it does for you too! on 01 Jul, 2012 - 10:14 pm

I tried the cocaine remedy once about 13 years ago at the suggestion of a friend who was a nurse.. she claimed that it would work and she was right
It worked almost instantly and for the next 14 hours (at a time when I was getting 4-6 CHs a day with my longest break being about 6 hours) or so, and I was so relieved at the time.
After the 14 hours I started to get what I would have called some minor shadowing and this grew over about a 3-4 hour period until it was a severe CH and it lasted for about 6 hours... The longest single CH I have ever had.

Needless to say I never gave the cocaine another try.

Sadly as it stands there is no miracle cure or even a reliable preventative medication or pain killer at this stage... only treatments that offer some relief to some sufferers.
I'm lucky that I have found an ally in Prednisolone... It works for me but is the enemy of many on here.
Each of us needs to find the best treatment for our own situation and hope that something really does offer some relief.

Wishing all pain free days

Posted in Harry Potter gets CH on 01 Jul, 2012 - 4:00 pm

Hi Emma,
I agree with Peter that finding a decent doctor is not the easist thing to do
I tried an interesting thing with a doctor once when in the middle of a nasty cycle and I could not get to see my usual doctor as he was on a months holiday (so selfish of him), so it was the first time I had seen this new doctor.
The first 5 minutes he spent providing me with lip service and was taking no notice of what I was saying and his only idea was to offer me a script for panadienne forte.
I actually got quite upset at the time and told him in no uncertain terms that his ignorance in relation to CH and more to the point, his total disregard for anything I was trying to tell him was very frustrating.
To get his attention I told him that I was not going to pay for the consultation unless I was actually satisfied with the outcome.
This seemed to make him actually listen and some of his self importance diminished.
His attitude changed dramatically and he then read the information sheet that I always carry with me when in cycle ... Initially he had dismissed it and made the claim he knew all about CH when I had first handed it too him when I had first arrived.
The ignoramous new nothing!!! But was well educated and a somewhat humble by the time my regular doctor returned.
I have used that approach more than once and it has always worked.


Posted in Ride for Awareness on 21 Jun, 2012 - 8:35 pm

I wonder if with the news on another thread regarding Harry Potter there is any chance we could have a bit more interest in this now maybe riding on broom sticks ????????

Posted in Harry Potter gets CH on 21 Jun, 2012 - 9:17 am

I almost feel guilty that my first thought was
But the guilt soon passed
This is truly good news for all sufferers of CH world wide
Not good at all for Daniel and I feel his pain and sympathise but for the rest of us afflicted with CH this is an enormous step in the right direction from an awareness perspective.
I love your idea to invite him to join us Heather and also your idea of inviting him to jin us on our ride for awareness.

I hope this encourages other celeb sufferers who suffer in silence to (I'm sure there are others) to also let the world know how terrible a condition CHs are.


Posted in preventative meds on 21 May, 2012 - 4:41 pm

Hi Donna,
I never stay on any meds longer than I think is needed
This has at times meant that I have gone from thinking a cycle was over to some nasty late cycle attacks because I have gone of my meds too soon
When my cycle starts I hold out as long as I can with as little as i can in the way of meds with Deseril Atenolol and Endep all having worked for me in the past to some degree.

All meds have some side effects so stopping or reducing between cycles is very important to me, and I think it helps the meds be effective for longer periods of time, from one cycle to another
The only med that has always worked for me is Prednisolone but the side effects of prolonged use of prednisolone mean a lot of CH sufferers wont use it
For others results have been limited but for me it has been my one true light at the ned of the tunnel when I have been in a cycle, and it is oddly a comfort to me knowing that I can always turn to it when nothing else is working for me
I have been lucky in a way as I have never had to take it for more than 3 weeks in a row and I get almost instant relief when I start taking it. On the whole you will not find a lot of love for it on here.


Posted in Ride for Awareness on 04 May, 2012 - 2:51 pm

Thanks Donna and Heidi.

Great to see some new members getting behind the ride.
There are many diffferent ways that people will be able to help once we start the planning stage but we still need a lot more interest and a few more people that want to spend a bit of time on a bike would be handy.
If anyone is interested, you can PM me with what you can offer and I will then have an indication of the numbers that are keen to participate and what they are willing / able to contribute.
Please for those that are able lets do this !!


Posted in Ride for Awareness on 30 Apr, 2012 - 10:21 pm

COME ON PEOPLE GET ON BOARD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Posted in Ride for Awareness on 05 Apr, 2012 - 3:21 pm

Well said Matt!!
You suffer more than most on here and should serve as an inspiration to others to get behind this and make it happen.
Anyone that wants to take part even if riding just one stint or even a half stint please indicate your interest on here.
Anyone that thinks they can not contribute (Saintpeter excluded) is wrong.
There are so many things that can be done from getting corporates involved to driving support cars to actually riding all or some of the trip
I have mapped a ride from Sydney to Melbourne that I will put on here shortly with daily distances to be traveled and towns that would be good options to stop in on the way down.
If others think there is a better format than a Sydney Melbourne ride please let me know what it is and all ideas will be given due consideration.

If anyone needs incentive to get involved then have a look at this thread[

If that is not enough to make this worth while then I don't know what is.
This site is full of stories of desperation and suffering... and we all live it with little if any understanding from the medical profession and even less from the general public.

I realise this is not a small task but the rewards for both taking part and what it could achieve in making people aware of our plight says to me that this is ssomething we MUST do


Posted in Comorbidity in Cluster Headache on 05 Apr, 2012 - 2:40 pm

Hi Red

I have not had any other medical issues including depression
The only issue I have had other than weight gain through the meds i take is when in cycle UI have suffered from a seriously elevated blood pressure but it drops back to about 120/70 within a week of a cyccle ending
I have often used this as a measure to tell me when I'm actually over a cycle as opposed to the drugs doing there job.
If my relief is drug induced then the blood pressure stays high


Posted in Ride for Awareness on 01 Apr, 2012 - 10:00 pm

Hi peoples ......
First of all .... Can we please have the heading "Ride for awareness" put back on this thread
I'm still keen to see this get off the ground but have not been on a lot lately as I have been crazy busy at work.
I do apologise for not driving this bus a little more often.
I have spoken to some of my mates who i ride with and a couple of them are from the medical industry (a hospital CEO and a couple of ambo's and one doctor/surgeon)
They are all intersted in taking part in some way and all have moderate to good knowledge of CH and are willing to promote our cause from within the industry
Get on board boys and girls this could be the time of your life!!!!!


Posted in unsure???? on 08 Feb, 2012 - 8:30 pm

Hi and sorry to here of your husbands suffering.
Sumatiptam (imigran) is one of the main stays in treating cluster headaches and works very well for some and not for others
There are many different meds that can be used to try and get relief from CH.
The best idea is to get a decent doctor who is up with both correct diagnosis and treatment of CH.
There are some listings on the left under practitioners and would be worth contacting one of them if they are handy to your location.
You will find great support in here from people that understand the pain that your husband is going through and also from others that support those that suffer.
As for taking the pain for him I have to say that you really really don't want to do that ... I would not with this pain of CH on my worst enemy let alone someone I care about.
Good luck and never be afraid to ask questions in here as there is some incredibly knowlegable people in here and some great information.

Posted in Ride for Awareness on 03 Feb, 2012 - 8:53 am

Hi Megan and thanks for your input.
What sort of support are you able to offer, and don't discount riding yourself based on the fact you are not a sufferer


Posted in UK based Film-Maker seeks CHers for Documentary on 03 Feb, 2012 - 8:39 am

grannysa said:

Here's a thought from my teaching days:

"Talent = above average knowledge + passion + creativity"

Go for it .."


Posted in Nines ACA on 03 Feb, 2012 - 8:34 am

Hi all
I can understand some of the cynicism on this idea but i think it would be a lot easier to have a positive story perpertrated than some others seem to think.
I'm not interested in being on the box or on film (great head for radio here) but my situation is one they would have a lot off trouble spinning in a negative light
I have NEVER taken a day off work because of my CH... I have had days when I have been pretty low functioning but nevertheless I have still been there.
My job involves more than 100,000 kms behind the wheel each year and I manage this so far without incident even when at the height of a cycle.
I'm physically active (swimming, cycling, golf, etc) on a regular basis.
I fight my CH like crazy and am determined to never let it dictate how I live my life.
At times this is hard but so far I have managed like this for the last 23 years.
I'm sure that medical science is at a level that expert opinion on CH would mean that public support would be high for all sufferers after any story that we could get to air.

However, if some trash can journalist wants to try and spin our story into a negative then they had better have very deep pockets becausse we will own them buy the time im finished with them.
I'm sure that I am not the only one in this situation that still manages to function as close to normal inspite of my CH.


Posted in Steroids on 16 Jan, 2012 - 9:01 pm

HI again, I forgot to say that this is what works for me and that I knw of others who have tried the same thing and had no luck.
I found that 25mg a day did nothing for me when that is what I was prescribed and from all the information I have seen on the use of prednisolone for CH ifit does not start working in about 2-3 days (when I go straight on 75mgs Mine stop within 24 hours), then you need to see your GP and try and have the dosage lifted.
Please done make any changes based on what anyone says on here but take notes and print pages of others experiences and take it with you when you go to see your GP
Cheers Chris

Posted in Steroids on 16 Jan, 2012 - 8:55 pm

HI Katy,
That is the same amount that I was first prescribed
The program that works for me is stright onto 75mg per day for 3 days then 50mg for 3 days then 25mg for 3 days and than stop
There has been times that I have had rebound attacks one or 2 days after stopping the prednisolone. When this happens Repeat the same program and this has never failed to abort the cycle for me.
I sould also point out that after you stop taking I get sometimes for as much as a week, severe shadowing that seems to be on the verge of a full blow attack but never actually get a CH and I get little relief from this but it is far better than a full on CH

Posted in Time of year on 16 Jan, 2012 - 2:34 pm

Hi Katy,
My onset is usually at the end of winteer into spring and is often preceeded by some early season hayfever, so from mid to late July I can start anytime

Posted in Steroids on 16 Jan, 2012 - 2:21 pm

Hi Katy,
I was more interested in the dosage that he has you on rather than the regime for taking them
In my experience doctors (at least for me) nevr prescribed the Pred at the right level to have much effect.
It was through trial and errror that I found a dosage (considerably higher than my doctor suggested) that worked for me>

Posted in Ride for Awareness on 16 Jan, 2012 - 1:07 pm

Come on people lets get this going !!!!!!!!!!!!!!!!!!!!!!
I'm happy to asssist anyone that wants info or advice on the things one would need to do by way of preperation to go on a long ride over consecutive days.
This is something we should ALL be supporting.
We all know the frustration of sitting in front of a GP or specialist and them not having any concept of what we have a what we are talking about.... and worst of all no conprehension of the pain and sufffering, that we go through.
I am out of cycle at the moment and can understand that when out of cycle it is hard, (even for us) to appreciate what we go through and this could be responsible for a relative degree of complacency, but lets not forget what this is all about .
The benifits, in so many ways, to all of us, would be huge and this is a great opportunity to start the ball rolling.
Please people....... Give this due consideration and be selfish .......



Posted in Steroids on 16 Jan, 2012 - 12:44 pm

Hi Kba78
Yes Prednisolone is a regular abortive treatment for CH but the drug actually has a lot of side effects.
I use it when the pain gets too much during a cycle and have had good success, but I only use it for very short periods of time ... never more than a couple of weeks in duration.
What dose does your GP have you on???
There are a lot on here that use Pred and others who have and won't any more because of side effects something i have been on the whole able to avoid to this point in time.
If you have questions feel free to ask on here or you can send me a private messsage

Posted in Ride for Awareness on 29 Dec, 2011 - 10:10 am

Hi All
Anyone thatis in Vic and is interested in having a bit of a test run around Ballarat mid feb have a look at this link.
There are 3 rides of 60-85-100kms and also a timed ride of 2.5 hours around Lake Wendouree. The 2.5 hour ride would be a great idea for someone starting out as the entire circuit is flat.
I will be takin part in the 100km ride on the day and it would be great to have other Cluster Heads with me.
I won't hoild my breath but thought it was worth mentioning

Posted in Untitled on 28 Dec, 2011 - 9:15 am

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.

Silent Planet"

Hi Wayne,
I agreewith Matt about the oxygen but I would think that you could start on about 10litres per minute.
This intake initially has worked in the past and I know of others that have had sucess at this level. I think it is always better to strat on as low an effetive intake as possible and then to increase on a needs basis, till you find a level that works for you
And remember that it will not work for everyone.

Posted in Ride for Awareness on 20 Dec, 2011 - 8:20 am

Hi Tanya, Paul and Penelope,
Great to have you on board and any asssistance you are able to offer will be greatly appreciated, be it from an organisational suppport role right through to a 100% rider.
Any contacts anyone has or suggestions just lets us know.

Posted in Ride for Awareness on 19 Dec, 2011 - 2:12 pm

Ben said:
I am in SA and cannot ride a bike anymore, or get myself to NSW where this idea seems to be centred. Like many people, I have had involvement in charities, not for profit incorporations, obtaining community grants, raising awareness of different issues, etc, etc. I know it is not easy to do. I don't envy those who are in the driver's seat on logisitics, I am sorry I can't do more from here.

Imigran time.
Cheers, Ben."

Hi Ben,
The route of the ride is totally open for discussion.
The idea to ride from Sydney to Melbourne was only my original opinion in the opening post in the thread.
My main reason for choosing this route was that on my map it is all downhill with Sydney being well above Melb icon
As far as the route goes if we can heget the corporate support to do it I would love to see the ride visit all mainland capitols excluding maybe Perth and that is only because of distance.
The more places we can take this the better.
I want to ride the eentire thing so I guess I based my original route on what I thouight I would be able to acchieve myself.


Posted in Test yourself to find out how toxic you really are. on 08 Dec, 2011 - 9:43 am

Hi Les,
I am one who would argue that most toxins do no harm to you at all in relation to CH
Im a non smoker very rare drinker (certainly not when in cycle) and my diet is very strict from a health perspective.
These are all changes I made thanks to CH and if anything despite all the efforts I make and precautions I have taken the severity of my attacks are increasing with every cycle that I get these days.
I don't know that the answris but I certainly can confirm that removing toxins has done me no real good at all.

Chris .

Posted in Ride for Awareness on 04 Dec, 2011 - 7:58 pm

Hi all,
I thought I would relay a story of a charity ride I did recently.
72 of us set out from ballarat and headed north out of town to a place called Creswick, from there we rode on to a little historic town called Clunes and then continued on to Maryborough in the central goldfields part of Victoria. We then turned West and headed for the town of Avoca in the Pyrenese wine district.
Our journey then set a southerly course and we road via the tiny town of Talbot back to Ballarat after about 5.5 hours in the saddle and a total of 142kms travelled, 70 of the 72 who started the journey finished with 2 riders who had been involved in a fall pulling out at Avoca.
The ride raised $23,800.00 for the charity it was assisting and everyone had a great time and I spent a considerable ammount of time riding with one of the organisers and told him about this site and what we would like to do.
He gave me some great advice and some excellent contacts and also offered to assist in anything that we may happen to get going.
We still need some serious interest in this but I still have faith that we can make this happen and that it can really make a difference in the future if we can just get this done and make sure we do it right!!!!


Posted in Untitled on 29 Nov, 2011 - 10:04 pm

Hi Kim
My thoughts are about 4 posts above and as for explaining CH to others so they realise the severity of CHs this works.

I find that telling them that on a pain scale a migrane is a mozzie bite and a CH is a shark attack .... This almost always works and I had migranes (4-6 per year from about 8 years of age) until just before I got my first CH attack when I was 22. I have not had a migrane since the CHs started.

I also carry some literature with me and anyone who cares to listen and who is sceptical of the severity of CH I simply show them the information I carry
It has brought people to tears on more than one occasion.

Regards Chris

Posted in Are they cluster headaches? Who can diagnose me properly? on 21 Nov, 2011 - 9:00 pm

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

I hope this is right for Tara, Matt, but for me the dry mouth associated with Endep never stopped (I used Endep for 6 years) and to combat this I started sucking sugar free pepermints over night to generate saliva.
This did work for me and there are also things that you can buy at the chemist that help.
Tara are you still taking a dosage of 10mg a day... I hope you are based on the fact it is working because I started on 10 went to 20 and then to 50mg. It was not until I started using 50mg a day that I really got decent relief so for 10mg to be working is excellent for you and should mean sustained relief

Posted in Prednisone on 16 Nov, 2011 - 8:16 pm

Hi Wrighty
Normally I just put on a bit of weight (My latest cycle was 6 kilos in 4 weeeks)and the weight gain is getting more each time I use the prednisolone.I have also had a bit of the moon face crap going on as well, but that subsides pretty quickly whe I stop taking it.
I have also found that I can run on overdrive and also hot when Im on the pred.
Other than that I have not had any other real side effects, so no ulcers or other things yet.
That is why I try to minimise my time on it and use it as a last resort.
You really should make sure you have a handle on all the side efects and make sure you monitor yourself when you are taking it.

Posted in Prednisone on 15 Nov, 2011 - 7:51 pm

Hi Wrighty
Excellent to hear that you have found a saviour.
Pred is my saviour too although I try to last as long as I can without it.
Great to see that you have changed to green
Just wondering if you have had any noticeable side effects to the pred???


Posted in Untitled on 14 Nov, 2011 - 9:10 am

Hi km,
Hmmm.... Not so sure I would want to be taking the prednisolone for an Entire cycle
In the past I have sometimes used it twice in a cycle normally at a rate of 75mg a day for the first 3 days and then 50mg and then down to 25mg each for 2-3 days then I stop using.
In the case of a return bout I would either start again at 100 or 75mg and would take this for 2 days then drop 25mg every 2 days until I stopped.
Second round has always beaten the cycle for me.
This is not the case for everyone but if it is for you then like me you should consider yourself one of the lucky ones.
Most of my suffering is based around fighting the cycle until it gets so bad that I succumb to the necassary evil that is the relief that I get from the prednisolone.
Try not to stay on it for your entire cycle (I know you said your last cycle only lasted for 3 weeks) as this could mean some months, and that would almost certainly mean that you would have several of the side effects materialising.

Hope you can break this cycle really soon

Posted in Are they cluster headaches? Who can diagnose me properly? on 13 Nov, 2011 - 7:43 pm

Hi Tara,
How long have you ben onthe Endep as I took it some years ago and had good relief from it but it took about 2-3 weeks to kick in properly.
At the time I was also taking Deseril which I had previously had sucess with but which was having no effect at the time I started on Endep.
I'm not sure bu if I recall you have not been on the enddep for long and I think you should talk to your GP about the dosage you are on and maybe up it to as much as 50mg a day, or at least discus this option with your GP.


Posted in Untitled on 11 Nov, 2011 - 12:47 pm

Hi Peter,
Nostril hairs!!!! YUK!!!!
I'm not so sure that it is a good lifestyle Peter.
I first used prednisolone in about 98 and used it for too long (about 3 months) at low dosage I think about 10-20mg) and had some adveerse efffects now I only use it in short sharp (but strong) bursts when the cycle has become to much to deal with.
I have only turned to it 4 times in total and before my most recent cycle the last time was 2005 so maybe that is why I don't find it as severe as others.
My results with it however make it worthwhile.
It really is my personal super drug.
I have read a lot on it in here and been amazed that so many have major issues with it, but as we all say in here it is what works for the individual.


Posted in Are they cluster headaches? Who can diagnose me properly? on 10 Nov, 2011 - 10:35 pm

Tara ,
In relation to the endep I took it as a preventative for a few years and have some succes but takes a couple of weeks to kick in.
I would also be really surprised if it was making you woozie. I'm sure that would be the maxalt thatis doing that to you.
Have you even been prescribed verapamil or prednisolone??


Posted in Are they cluster headaches? Who can diagnose me properly? on 10 Nov, 2011 - 10:31 pm

Hi Tara
Don' take no for an answer print some of the information off here and make sure he understands the severity of your condition.
I have upset several GPs over the years informing them of there total ignorance of my CHs.
Let him know how terribly you are suffering, and tell him that "NO" is not an option. You need relief and deserve it.
Print a coup[le of pages from the O2 thread and take then with you.

Hope you find some relief soon


Posted in Untitled on 09 Nov, 2011 - 9:49 pm

Hi km,
That is great knews.icon
My money is on the prednisolone working for you.
Hopefully it is as if it works this well there is a chance that it has suceeded in aborting your entire cycle..... I really hope it has done this for you.
This does not mean it will always work and you should always, with every cycle, try new meds and see what relief you can get before you head back toi the prednisolone, but it is comforting to know that it is there and what it can do for you .
You just want to minimise how often you use it as much as possible.


Posted in Ride for Awareness on 07 Nov, 2011 - 9:00 pm

Hi Matt

I certainly have not forgotten about it
I have been doing a lot of riding as well in anticipation that we will get it happening
We still need to get some serious interest from on here and riders that are actual sufferers out of cycle of course.

Not sure what we can do Matt until we get some positive feedback on here and some commitment to the cause.


Posted in Untitled on 05 Nov, 2011 - 9:45 pm

I dont consider myself out of cycle until I have had about a week with nothing at all including shadowing.
Some of the shadowing especially when coming of the prednisolone can get up to the level of a 4-5 CH but it is different and you can tell it is not a CH despite its severfity it is a bit more all over than a CH

Posted in Untitled on 05 Nov, 2011 - 8:26 pm

Hi km,
it varies dramatically with some sufferers being chronic and never getting any relief at all.The cycle I just finished was 14 weeks in total which is around the mark for me with mine normally 10 - 12 weeks give or take a week or 2 and mine until recently have been one cycle a year norrmally atarting late winter early spring
I truly consider myself one of the lucky ones but others can have several cycles in a year and some have cycles that can last for 5-10 months or longer.
I am also lucky because prednisolone has worked for me and various preventatives have worked for me as well at various times.
Your last cycle of three weeks could be the term that yours run all the time but I hate to say this but they are variable and could be longer or shorter.
I certainly hope for your sake that they don't last too long, but you do have to be prepared for the possibility they may.


Posted in CH - Do they ever stop? on 04 Nov, 2011 - 12:17 pm

Hi Jrod ,
What area are you from ... there may be another option for you to see rather than waiting weeks for an appointment with your neuro.
It would be wise to get yourself a GP that you can educate about what you have and what treatments are available.
there is heaps of iformation on this web site and if you look at the "What they are" tab at the top of thins page it is worth printing this and taking it with you and maybe highlight some of the parts fron the section that says "How is a sufferer affected"
There are some really powerful words in this section of the web site.
The other thing is you need to educate most people about what and how severe CHs are .... Approach all medical people with a healthy dose scepticism in relation to their actual knowledge into this condition.
Unfortunaltely you need to be in control because most are ignorant or ill informed because of the rareness of this condition.
have you tired any other meds such as imigran nasal spays or injections or perhaps verapamil or even (when all else fails) prednisolone.
I really hope you can find some relief soon but you have to be in control and knowledge is power!!
Cheers Chris

Posted in Untitled on 03 Nov, 2011 - 10:12 pm

Hi km
This is all the sort of things that i go through when using the prednisolone and as much as it annoys you it is so much better than the option.
The stifness can actually be reduced with a gentle massage but it has to be gentle too hard hurts like hell and another option that works for me is a heat sausage full of rice i think and I heat it in the microwave and wrap it round my neck.
I do find that nuforen zavance and tramadol will actually ease the shadowing considerably when on the prednisolone and even panadol can help.
This also eases the neck pain as well in particular the zavance does a good job on the neck pain
I agree that it can be quite exhausting but again as bad as it is it is still miles better than the option
I really hope the Pred works for you in the way it works for me.
Stay strong !!

Posted in CH - Do they ever stop? on 03 Nov, 2011 - 12:15 pm

Hmmm I would have to say no to that jrod.
There are many sufferers on here that are considerably older than that.
I have been getting CHs since I was 22 and I'm 44 now and there is no sign of them abating yet.
I'm really surprised that your neuro told you that.
How long have you been sufering and what meds are you on to help combat you CHs

Posted in Understanding this headache on 03 Nov, 2011 - 7:13 am

Hi km, I have not seen a neurologist since 2002.
I have a really good GP who I go and see and who changes my meds when needs be,
I have found this works for me as I also live 2.5 hours from Melbourne and my work also means that other than taking annual leave I can rarely make an appointment and be confident of being able to keep it.
As for you having a dotors appointment for the day you stop taking the pred you may be a couple of days early as it can take 3-4 days after you stop taking them for the CHs to return if they have not been aborted.
I realy hope this works for you.
It has been a life saver for me over the years.

Posted in Understanding this headache on 02 Nov, 2011 - 8:49 am

Hi km
The feeling behind the eye is shadowing and in my case you can get constant shadowing for days on end when you are using the predniolone and the shadowing can fluctuate from a soft 1 on the kip scale up to 3-4 but this is far better than running a normal cycle.
Another thing that I notice with the prednisolone is that you normally get a full nights sleep which for me is half the battle.
When you run your 8 day cycle of the prednisolone and then stop using it you may find that the shadowing gets worse but this should only last for a couple of days.
Another outcome is that the prednisolone cycle has not been long enough to abort this cycle of CH for you and if this happens the retuning CHs can be extremely severe and my advice if this happens is to go straight back onto the prednisolone at 75mg a day for 3-4 days and then work your way off it again in reductions of 25mgs every 2 days.
Doing this has always worked for me ... I truly hope that it can wok for you as well

Posted in Understanding this headache on 01 Nov, 2011 - 7:58 am

Hi Peter.
Interesting you ask that as I didn't have that sort of feeling but I ride a bike quite a bit and found that my feet were falling asleep when I went onlong rides and this has never happened before.
I was not sure if it was the prednisolone which I ahd not used since 2004 or the atenolol which I was using for the first time or it could have beeen the result of any number of the other drugs that I had in my system for my most recent cycle ..
I will have to monitor that next cycle.... hopefully in 2020 or later
I have now stopped all medications and am trying to lose the 7 kgs that the prednisolone generously contributed to me.

Cheers Chris

Posted in Understanding this headache on 30 Oct, 2011 - 10:45 am

I have tried the tablets in the past with no effect and personally I have have no real success with the nasal spray... That said I have never really given it a solid chance, but have been told by others that use the nasal spray that they have good sucess with as long as you get the timing right.
As for the Verapamil I used that for 2 cycles 10 years ago and it worked well but the next cycle I found it ineffective and I was then put on Deseril and this worked for the next cycle, since then I have also been on endep, naproxsyn, and Atenalol.
The only thing that has given me constant relief is the prednisolone although I have managed many cycles without it when some of the other drugs have been working.
It really is a case of see what works and stick with it until it stops working, which unfortunately seems to happen after time with most of the preventitives in particular.

Posted in Understanding this headache on 29 Oct, 2011 - 8:10 pm

Hi again km
I use prednislone with great effect but find what the doctor sugests and what is reuired are not quite the same
For me I go 75mg for 3 days then 2 days at 50mg and then 3 days at 25mg and then I stop and I have found this quite effective.
Some times when in cycle I have had to do this twice and the shadowing can be exhausting although this is as much about a withdrawl from the prednisolone.
If you get attacks after the first round of prednislone they will unfortunately more than likely be quite nasty. If they do return try the same dosages of the prednisolone.
Ther are manyside effects with predmisolone and it pays to make sure that you are farmiliar with the and monitor if you are suffering from them.
There is an enormous amount on information on this website and I have found it a fantastic place with some very knowledgable people who understand what you are going through
The information under medications on here has all the side effects that you may suffer but compared to the perils of a long cycle most are worth it.
Please understand that I have NO medical training whatsoever and that the way I use the prednisolone is what works for me.
I have heard of others who have had success with much lower doses and others who use considerably higher doses,


Posted in Understanding this headache on 29 Oct, 2011 - 4:07 pm

Sorry to hear that you are sufering.
What is the steroid that you are taking and what sort of dosage

Posted in Untitled on 29 Oct, 2011 - 4:00 pm

This is an interesting subject and I was discussing it with my wife and she said that I have a masive tell that I had never noticed or identified as a tell.
After it was pointed out to me it was so obvious but I get severe hayfever, and once my cycle actually starts the hayfever stops but my wife pointed out that the hayfever stops about 3-4 days prior to my first attack, and upon reflection she is absolutely correct.
I guess for me it means that sufering hayfever on a "daily" basis it actually a good thing as it means that the devil has not got me in his sites at least for a few days .

Posted in Status on 23 Oct, 2011 - 5:22 pm

Thanks Peter and Dan,
I have taken the plunge and gone green
I must say after this cycle I'm hoping for nice long remisin but I guess only time will tell.
Thanks for all the support
It really has been a great help.


Posted in Status on 19 Oct, 2011 - 7:33 pm

Hi Alan,
Excellent news for you being in a position to change your status.
To change your status go to your profile page and then click on EDIT MY PROFILE and just under where you have your email is the question ..... Are you or the person you are here for currently suffering?
Just change the status from yes to no and save .
I'm hoping to follow your lead in the next few days.
I have been headache free for 6 days but still been getting some really mild shadowing that is just enough to tease me.
Hopefully this cycle will be all over very soon.

Posted in Is it time out yet? on 13 Oct, 2011 - 8:48 pm

Hi Neil,
Not good that they are still hanging around. I was kind of hoping the same thing myself... Have stopped most my meds and have had a bad day with continuous shadowing at about 3-4 with a couple of peaks up at 5ish
I'm hoping it is all a reaction to stopping the prednisolone a bit quick.
Have been told this can be a major problem when stopping pred too quick in paticular
I had to stop it I was starting to look like the michelin man in the face
I have ben told that timiing is everything whe using he nasal spray and I have got it wrong every time I have used it (I'm a bit timing challanged) I think but have seen some great results with others using it.
You have to use it just before you start to get congested in your nose on the affected side on your way up I'm told at about a kip level 3.
Will be intersted to see how it works for you if you manage to get the timing right.

Posted in just how far can you go on 10 Oct, 2011 - 8:10 am

Hi Alex,
Hmmm ... I had my first attack in April 1989, and was chronic until 1998 then became episodic.
I have been very lucky in a lot of ways as I have bucked the trend of getting worse as I get older like a lot of sufferers do.
This current cycle is my first since 2008 and before that it was 2006 .... before that it was every year since I became episodic.
So as I said I feel very lucky compared to so many others.

Posted in Time to "fess" up on 09 Oct, 2011 - 9:19 pm

Hi Heather
This is not good news to hear at all.
I hope this is a very short lived cycle for you.
My current cycle has been made a lot easier thanks to you and others on this site and for this I am ever so grateful.
I'm hoping to change my status to Green in the very near future, but I will be sticking around the site to support those that have made thngs so much easier for me.

Posted in just how far can you go on 09 Oct, 2011 - 9:07 pm

Hi Alex it is great to hear that you are in a much better place than you have been.
Every little win that I read about on here brings a smile to me, in the same way that every tale of current suffering fills me with a knowing dread. icon I truly hope that you recent success continues into some form of longterm relief from you CH hell.

On another note.
I agree totally with what you have written in relation to value of this website.
I have also been looking on the net for quite sometime and like you I found that the US sites although informative didn't offer the sort of personal support that I have found since joining the Aussie CH site.
The advice and the sense that others really do understand and actually care about each others situation generates a hope that I could not previously find on any other sites.
Despite the severity of the cycle I am in (prior to starting on Prednisolone) this cycle has been easier for me in a lot of ways than previous cycles because of this website and the comfort it has brought to me just because it is here, even at 3.00 am with an 8+ attack.


Posted in Thank you. on 09 Oct, 2011 - 7:37 pm

Hi Ben and Heather,
Thanks for the great advice
As I have said this is not the first time that I have been prescribed Pred but it is the first time that I have actually filled the script and used the stuff and the result has really amazed me.
I took my first Pred on the 22 of September and have twice been up to 100mg and then back down to 75-50- 25 over a few days and have now been back at 25 for the last three days and although I have been having a bit of shadowing I have not had a real attack since the 3rd of October which was the last time I got the dosage back to 25mg
I am seeing my doctor on Tuesday and will make a decision which way to go then as I will need a new script as I'm starting to run low.
I'm actually hoping that I'm through this cycle and it will be 13 weeks since my first attack in this cycle come Wednesday. This is longer than normal for me and with a bit of luck I can be off the Pred within the ext few days or at least working towards being of it.
As for the Pred I certainly intend to stop using it as quickly as i can but due to my work at the moment it is so full on that I had to do something that allowed me to function as best I could.
I hate these bloody headaches so much !!! To me they arent even fair when you are on the improve or out of cycle as (I'm not sure if others ever get this) but I get masive guilts when CH free because I am often so hard to be around and so non functional when in a cycle... and the stupid thing it is the ignorance of others that makes me feel like some freak or some sort of prima-donna and hence I feel so damned guilty.
Does that make any sense to anyone else?????

Posted in Thank you. on 07 Oct, 2011 - 8:46 pm

thanks for that Heather.
Can you give me an idea about the time frame that people have been on Pred before the serious side effects kick in
I have only been onfor a few weks but the results hav ben great.
I have been told that if I can limit my use to less that 6-8 weeks and get all the way of in that time frame then the quantity on't really matter as it is long term use that does the damage.

Interestingly my wife is telling me that I'm hyped up like crazy and others have said the same to me in the last couple of weeks but I have also only just started taking atenolol, and have dropped all the other drugs I was taking.
I have read up about actions and reations for both drugs and neither seems to suggest that I hold be running on overdrive but I have massive energy for some reason.
I have just recently started on a major get fit thingy and have also been riding massive amounts of Kms and still my energy levels are very high
Any thoughts/information would be appreciated

Posted in Thank you. on 07 Oct, 2011 - 2:19 pm

Hi Rick.
I have previously been on Endep for the last 6 years and this time round it has not seemed to help me at all and since I was first prescribed it, it's effectiveness has reduced with each susequent cycle.
Interestingly this time round I have for the first tme relented and been using Predneselone and it seems to be doing a really good job for me.
I have been on other medications in the past Deseril Indocid, Naproxyn and for a short time I was also prescribed Carbamazepine at a rate of 400mg per day and this actually made me quite ill so it was only short term but it did at the time reduce the severity of the CHs
How long were you on Prednesolone as I do worry about its side effects but have been told if you can keep the dosage lowish (I'm fluctuating between 75mg and 50mg per day) and restrict the time frame that you take it for then a lot of the the problems associated with it will not come to pass.
Anyones input on this would be appreciated because I have avoided Prednesolone for years but it has been an absolute life saver this time around.

Posted in Ride for Awareness on 06 Oct, 2011 - 8:25 pm

HI all,
I have spent a bit of time this week trying to establish a few early connections to see if this idea can become a reality
I have had some initial talks with a wholesale bike company and I must say I was very impressed with there approacht to the questions I was aking and what I was angling for.
I also spoke to someone I know who works in a pretty high up position with BP and he informed me that corporate support for this sor of thing (especially when they can get publicity in a basically green forum) Is more probable than not.
May mean that we would have to ride in gear that has BPall over it which I see no problem with
I also mentioned this scenario at my workwith senior management and with an exexcutive freind in an associated industry and both reacted in a very positive manner.
Custom fleet is the other company that I have approached (about support vehicles) and they have said they are quite willing to try and work something out when have a better idea of what we are doing
Thats all for now other that to get a bit more of an indication about the level of support that we can get from on here
If we don't have particitpants (and I mean sufferers) then this is all a waste of time and I think it could really work .
Cheers for now

Posted in Ride for Awareness on 02 Oct, 2011 - 5:08 pm

Hi Matt and Heather,
It is great to see that you are keen to see this get off the ground.
It is good that you are willing to do the media kind of thing Heather as I have a total aversion to any form of public existence.
I'm not sure if we can get the numbers for tis sort of thing but we can only try.
I would imagine we would travel with a few support cars so you could steer one of those Heather.
Any suggestions about how to proceed would be great from anyone
Common guys and girls don't be afraid... this could be the adventure of a lifetime!!!!

I would like to see what progress we can make before the end of the year and maybe aim to have something in place by March April 2012. I think this time could work for a lot of us clusterheads as it seems a ot of us eposodic sufferers seem to be clear in the Autumn.
I still think that one of the most important things we need to do is work on a wa to raise funds so that we collectively as a group will not be out of pocket.
I have estimated that if we could do the ride over 7 - 10 days then the per person rate would work out in the vicinity of $1500.00 - $1800.00 per person for riders and a similar amount for any support people. This figure would include all expenses for the trip for all parties.


If we work on a total number of 30 (20 riders 10 support) then we have some Idea as to what we need to do to et this off the ground
If anyone has a high profile friend or suggestions as to who we could approach eg Dick Smith, Gerry Harvey etc and sports people and such then this would be a great start.
I know that Westpac has in the past supported this sort of thing and some of the motel chains have also offered good support.

Posted in Just wanted to say HI and apologise for my being MIA! on 30 Sep, 2011 - 7:09 pm

Let me know if you need a hand on the computer Shell....
Blind leading the blind icon Could be fun !!!
And I for one have no issue with those pics getting on here
Think it would be a good idea


Posted in Just curious on 30 Sep, 2011 - 7:06 pm

Hi Leathal
There seems to be no rhyme or reason as to how cycles work
I consider myself one of the lucky ones
I started out as chromic from age 22- 30 then became episodic and for the next 8 years I was 1 cycle a year of 8-12 weeks about this time of year then in 07 I missed altogether and had a return cycle in 2008.
Since then I am currently in my only cycle since my 2008 event.
The other thing for me is that the longer it has been between cycles the worst they seem to get, with this cycle being worse than any I have had in the past and even my wife has noticed that I seem to have been suffering a lot more this time around.

Unfortuately I can't see how any of this can really help as it seems the manner in which CHs manifest from one person to another is as varied as one could imagine.


Posted in Ride for Awareness on 30 Sep, 2011 - 10:41 am

HI all,
As I have only been a member on here for a short period of time it has come to my attention that a problem that I have had in my 22 years of suffering CHs has been the same as most others on this site.
The lack of awareness of our conition is basically one of total ignorance or a misinterpreted representaion of the seriousness of our condition.
The incredible combined knowledge of members of this board has amazed me and I think the opportunity would be there for us to take advantage of this and to perpetrate a massive awareness campaign.
I am an avid listener of the ABC, predominantly Victorian country areas and the statewide coverage but one thing that I have noticed over the years is that ability of the ABC to get on board for less than mainstrem causes.
I think the opportunity to try and take advantage of this is enoumous.
I would like to be part of a ride for awareness.
Not a huge thing that has a million riders but a small group of sufferers and supporters to take part in a ride from lets say Sydney to Melbourne
This would not be about raising money but about raising awareness.
In my work one thing I have noticed is that it is a lot easier to get people to listen learn and even take notice of a cause if it does not include a financial outlay.
As soon as you ask for a contribution you loose about 80% of your audience.
If we can get the ABC and maybe even a 3AW or a 2UE to support us and we can get a little air tiime then I think this could be a huge step in the right direction.
I am quite willing to do the initial groundwork and even try to secure a few cost covering sponsors as we would need support vehicles bikes and accommodation costs covered.
I have no intention of proceeding if we are unable to get this corporately funded as the financial burden is something none of us need.
I would appreciate others feedback on this idea and more than that I would like to know of any others that would be willing to take part in a 1000 km ride probably over about 7-10 days, with at least a dozen riders to take part.

If anyone has any knowledge or contacts who would be classed as high profile that could enhance our appeal to the media in general please feel free to lets us know.

Alternatively any other suggestions that we could collectively work on to increase awareness of CHs would be much appreciated.

The other thing this could help with is the desrie of some to have the name of our condition changed......... If we can educate the public we don't need to change the name as we are creating an understanding that would become synonumus with the name CLUSTER HEADACHES.

Any and all comment will be greatly appreciated.


Posted in Just wanted to say HI and apologise for my being MIA! on 29 Sep, 2011 - 10:00 am

You never let anyone down Shell!!!
It is far more a case of you have so much to offer but it should never be expected.
It is great to have you back and from a personal perspective I have to say that the information and support that you have offered and the knowledge that you have been able to pass on too me, has been sensational and I will forever be indebted to you.

Thanks again Shell and wlecome back!!!


Posted in Untitled on 28 Sep, 2011 - 7:31 pm

Silent Planet said:
"Hi All,
The first problem is that the name "Cluster Headache" is the only name that it is recognaized internationally by all Neuro's and Pain Management Specialists.

I think that this is the most important thing.

Lets not try to change the name of a condition that way yo many GPs and other so called health care professionals still no little about.
How many of us have walked in to see GP etc and we have had to try and explain to them what the hell we are talking about.

The re-education of those that already have a grasp of CHs and those that need to start from scratch would double the time it would take for all to become fully aware of CHs

Lets not change a name just so it sounds a bit more exotic. Lets leave it as it is and work collectively on educating people and not just those in the medical profession.
The changes would be so far reaching with reaserch papers, informational literature etc would all need to be updated all at huge cost and even associated professions such as Chemists would all need to to be changed and re-educated.
All of this would take large ammounts of money....And I for one would prefer to see any money being placed in research so that in time the quality of life of all those that suffer from CHs can improve even if just a small ammount.

Posted in Topic Titles Changes! on 28 Sep, 2011 - 6:58 pm

Good Girl!!!
Welcome back

Posted in just how far can you go on 28 Sep, 2011 - 3:43 am

Hi Alex (Shrek 2226)
How are you holding up ???
You have gone quiet, I hope you are doing OK
For the chronic sufferers out there I have to say my compassion for you could not be higher. Yours is truly the cruelest hand dealt and my empathy and understanding is something that I wish we could all share with each other on a more personal level than an internet forum... For all the wonderful help this site is, nothing compares with a face to face conversation with someone that understands intimately the frustration, isolation, being misunderstood, the feeling of helplessness and all the other emotions that are associated with our condition.
I know that being episodic there is an end for me, a point in time to look forward to, but when you are having a bad day/night this is actually of lillte comfort.
Below is an extract from my CH diary that i think sums up my frustrations and what im trying to say (back to just shadowing for the first tiem in over 12 hours) I'll try for sleep now

What a great record to set ...
As I write this at 3.16am on the 28th of September 2011 I hvae just clocked 12 hours continuous. Currently at about a 6 on my way ack from a peak of a high end 8 that had me pacing around the garage at 2.00 am repeatably hitting myself in the head with a rubber mallett. lol looks a bit sillly writing that btu who the a damn...Used an Imigran nasal spray when heading back up at 1.45 with litle effect anf just took 100mg of pred after stopping using it for the past coule of days ... back o a 4 and maybe headng for some sleep ..Something tells m any sleep will be short lived an a return to the garage and rubber mallett is almost certain. Feeling pathetic and totally defeated as i cry tears of both pain and frustration.

Posted in The story so far! on 25 Sep, 2011 - 10:38 pm

Thanks Ben,
Had a read and did a little more research but it is very hard to find anythng specific about the success and failure of chiropractic treatment of CHs.
I did find one case study that you may find interesting and sent a couple of emails to a few Chiropractors in the US and one in the UK who (despite not saying how) claim that they have had great success in the eradication of CHs from multiple patients>
I have requested any information about their treatmet methods that they may be willing to offer and asked for it as to continue my quest fro chiropractic resolution to my CH problem.
I think I managed to massage their egos enough that they will be willing to divulge. hehehehehehehe
I will supply any worthwhile information if I get replies

Chers Chris

Posted in The story so far! on 25 Sep, 2011 - 1:24 pm

Hi Ben.
Some great information you have supplied there.
I think I am actually one of the lucky ones
It seems to me that in most cases CHs actually get worse in time but for me it has been a case of the severity getting worse but I have also gone from chronic to episodic and have also been getting longer relief betwen attacks and this seems to buck the trend for most sufferers.

This does not make me feel any better when I'm in a cycle but at least I can still see the light at the end of the tunnel.

In relation to your comment about C1-C2 vertebrae and the possible corrilation between some CHs and neck trauma, this would fit well with my initial onset after neck injury and also with the fact that it was after chiropractic work on my neck that I went from chronic to episodic.
Many so called medicl experts are sceptical of any link but I remain convinced that in my case there is a definite link betwen my neck trauma and my CHs....

I'm also well aware that I have not in relative terms tried that many meds compared to most and this has been partially by design and partially based on stupidity on my part!!!
I have actually had meds prescribed in the past and a fear (almost obsessive fear) of the side effects of a lot of drugs has meant that I have preffered to fight throughthe pain and rely on the les severe drugs for what relief they offer.
I have actually been prescribed pred about times in the past and this current cycle is the first time that I have actually illed the script and I'm happy to say that it does seem to be having some positive results.
I have always been a night time sufferer and for the last 2 nights I have only had minor annoyance and almost a full nights sleep...... The odd part is I have had a couple of nasty 6/10 today and 8/10 yesterday attacks around lunchtime and this is most unusual for me. But I find all attacks are easier to live with if I am still getting quality sleep.

Cheers Chris

Posted in The story so far! on 24 Sep, 2011 - 8:03 pm

I don't know why I wrote this.... I think I was trying to use it as a distraction when I had a CH earlier today but at the speed I type, to put the effort in I wasn't going to waste it.
I would be interested to read others experiences if they are up for to the point sharing.
I did try to be as short as possible without leaving too much out.

I got my first cluster headache in March 1989
Other than cross counter meds that I tried in the early days for the first few years before diagnosis I was prescribed the usual pain killers that need a script and was also told once by a GP I saw on a footy trip in Hobart that I was basically a nut case and an attention seeker and that there was nothing wrong with me and it was all in my head!!!!!
When I was diagnosed with CHs in 1992 the first drug the doctor prescribed was Indocid and this actually reduced the severity quite a considerable amount. Working on the kip scale I would have thought from a peak in those days of about 7 back to peaks of around 5 which was far more manageable. This worked for about 3 years but with reduced effect and eventually my GP increased my dose and also put me on Deseril which worked quite well until after I had my first remission in early 1998 as a result of a visit to my chiropractor. When I tried to (at my GPs recommendation) wean off the Deseril I found that I was getting (normal) headaches as a result.
Early 2000 after only having had one 9 week and one 3 month cycle since my first remission I came down with a bout of Ross River Fever which included a week in hospital with pneumonia and pleurisy. While I was in Hospital I went into a Cycle and I amazed the staff when I told them that I could not feel the pain of the pleurisy because of the severity of my CHs. At that point in time the staff had been trying to convince me that the headaches were part of the pneumonia. This was my first real experience of trying to educate so called medical professionals about Cluster Headaches. This included the specialist who was visiting me for about 3 minutes each day of my stay at the unjustifiable rate of $185.00 per visit. You would think at that rate he would have a least heard of Cluster Headaches. Eventually they tried me on Imigran in both tablet and nasal spray form and they had no effect at all and I have never tried this form of relief again.
For the next few years I was like clockwork. Coming into spring around footy finals time I would get a cycle that would last for 6-10 weeks.
I was still using indocid and Deseril (the Deseril only when I was in a cycle) and in 2001 when my cycle stared my GP at the time also tried me on Carbamazepine (until last week I didnít know it was better known as Tegretol) that actually made me quite unwell and I was taken off it very quickly and have not tried it again.
I stuck with the Indocid and Deseril for the next few years but each cycle was getting worse and in 2005 I was introduced to Endep and taken off both Indocid and Deseril, with some good results.
From 2005 to now I have only had 3 cycles (06, 08, and now) including the one that I am having now and this has been the worst that I have ever had. The Endep is ineffective and I have added to Endep, Naproxen, Atenolol, Zydol (Tramadol) and now fianally I have decided it is worth trying Prednisolone which I have tried to avoid. As I write this I am sitting at the computer around midday on Saturday the 24th of September 2011 and I am currently suffering a 8/10 that still seems to be intensifying. This really really pissssses me off because I donít normally get daytime attacksÖ.. I think Iím being punished for having a good night last night.
Iíll finish this later Ö. Iím just going to smash my head against a brick wall and to scream a little bit @%#$@^&#%##^$#%#&@#&*@&*!!!! 12.16
Finally I came good but a bit of gentle persuasion earlier and I managed to dislodge a filling and now I have a rather nasty tooth ache!!!!! How ironic.
I still consider myself one of the relatively lucky ones when it comes to CHs. My suffering these days is short term compared to so many others that are affected with this condition. I have found a new strength within myself since I started reading others conditions on the internet. Something I should have done a long time ago.

Posted in Anyone else's CH go to eleven? on 22 Sep, 2011 - 11:40 am

Totally agree with what you have said above Matt.
I started out as chronic for the first 8 years and never had a break and would have classed a considerable number of my attacks as 10/10.
But as time has gone on since my first remission there has been considerable increases in the severity of my CHs each time they return.
If I used my early idea of a 10/10 as a guide I would now be around 15/10 I would have thought. Maybe attacks seem more severe as I get older and my pain tolerance is diminishing but I don't think that is the case.
Last night for me was probably the worst night I have ever had not in intensity but in hours (details are in my CH diary) and today is the first time I have ever taken a day off work because of a CH.

Posted in just how far can you go on 21 Sep, 2011 - 12:52 pm

Hi again Heather,
I used to see a Neuro when I lived in Melbourne who was OK and gave my initial diagnosis in 1992 but there was little that could be done back then and then after the chiro first improved my situation i stopped going to him. Since I have lived in Echuca since 2001 I have ben seeing a diferent Chiro and I have a great GP here in Echuca as well who put me on ENDEP in 2005.
As I said it semed to be workig the last couple of cycles I have been through but this time round they seem to be making little of no difference to the severity of my headaches.
I am intending to make an appointmentto see my GP as soon as he can fit me in.
As for the medical information on the left I have tried several of the options available but as I said I stopped using drugs in favour of the chiropractic care.
Like I said before, maybe chiropractors have actually done nothing and I am running a cycle but to me it has always been a glimmer of hope that has helped me get through.
One thing I am sure of is that chiros have never made my CHs any worse!!
8 years as a chronic before my first remmission that just happened to coinside with my first chiropractor treatment certainly did fill me with hope.........

Posted in just how far can you go on 21 Sep, 2011 - 12:11 pm

Hi Heather
I'm not too bad thanks and reading others situations on here makes me realise that others are a lot worse of than me,
I thought things may be on the improve after my visit to the chiro followed by a headache free sleep but last night was not good with three attacks throughout each with a 45-60 min duration and probably about 7-8/10
Not sure whether to see the chiro or my GP and see if he wants to prescribe something else as the ENDEP is not helping this time round as it has in the past, I think it has in the past anyway.... lol
The more I read the more i think that maybe I have never had a wonder cure and that I have just been runing a cycle for all these years , but that would not explain the first time a chiro helped me after being chronic for 8 years

Posted in just how far can you go on 21 Sep, 2011 - 9:52 am

I agree that the Zavance can work but only when you get the chance to feel the onset coming. Night time terors are well and truly set in and for some reason (at least for me) the Zavance don't work unless administered prior to the onset.
I have had similar results in the past with codice tablets, by chewing a few when I feel a CH coming, they don't stop the CH but they do reduce the duration and the severity by a consideable margin.

Posted in My Introduction on 20 Sep, 2011 - 5:50 pm

Hi Ben Heather and Alex and thanks for the welcome.
I was first diagnosed by a neurologist when I was 25 in 1992, I had been suffering almost evrey day (2-3 per day) since not long after my 22nd birthday.
Incidently my CHs started about 2 weeks after I had a serious concusion during a football practice match. I injured my neck in the same incident.
I went 8 years from 22 to 30 without having any form of remmission and in this time i tried several different drugs with varying lengths of relief but none ever withstood the test of time with there efects diminishing in time.
As I wrote before a chiropractor adjusted me and after his first session I was CH free for about 6 weeks, and when they returned they came back slowly with very mild pain initially. They then returned to normal and I returned to the Chiro.
This was in 1998. Since then I have had about 10 CH free years and the other 3 years have been with CHs tortuing me several times a day .... Something most in here understand only too well.
I have spent a lot of time cursing this affliction but don't believe that I have ever reached a stage where I would consider that I was suffering from depression which I am thankful for, but at the same time suicidal thoughts(I'm sure this will be understood) have flowed at times at the height of a 10/10. Fortunately I have never seriously considerd this an option or a path that I would take
I have been on ENDEP for about 6 years but do not use it all the time and at the time that I was first prescribed ENDEP I was also under the care of a chiropractor who had worked on me before.
To this day I have no idea weather the ENDEP is actually doing anything but I think mentally it is some form of comfort.
Last night I had a session with the Chiro (same one) and came home and had a massive headache that was over by 8.30pm which often happens after a session with the chiro, but I have not had one since and I actually got a full nights sleep for the first time in a month.... not that big a deal really but i have felt a lot better today.
I don't think i have been "fixed" yet but I'm hopeful!!!!
This bit may sound a bit silly and incredibly selfish but I'm so glad I am able to speak to people that actually understand how incredibly debilitating these headaches can be.
I wish I had gone looking online a long time ago.


Posted in My Introduction on 19 Sep, 2011 - 8:44 pm

Hi all my name is Chris and I live in Echuca on the banks of the mighty Murray River.
As I write this I am "coming down" from a 1.5 hour 8/10. My fourth for the day (if you start the day with my 1.00am to 2.30am sleep depriver)
A little bit about me and my CH.
I got my first CH when I was 22 and for the first 8 years I never had a remission, and in that time I was having 2-3 CHs a day.
I found it impossible to get anyone to understand what I was going through, a situation that I'm sure most in here are well aware of.
I finally got some relief from my chiropractor who was treating me for a back problem one day and I had a severe CH, and he asked what was wrong. I told him and he told me that he may be able to help and worked on my neck for a while and then did some rather viscious manipulation.
Amazingly, I had my first CH free night for more than 3 years that night.
Over a period of time I have been treated by several different chiropractors and most have been able (eventually) to achieve a degree of remission for varying lengths of time.
CHs have only returned to my life in the last 3-4 weeks after not suffering for about 3 years.
I have also been taking ENDEP otherwise known as amitriptyline... an anti depressant that was prescribed to me in low doses for pain management during my last bout of CHs 3 years ago. I have not noticed any reference to this drug on any of my web browsing into CHs ..... Has anyone else used this???
Since the first chiropractor induced remission I have have had 6 seriously nasty returns to daily CHs, but they have always been controlled within about 3-6 months, and have been followed by remissions of varying lengths.
That is enough for now, other than to say that I wish I had looked on the internet a long time ago, and found this and other sites.
To be able to communicate with others who can relate on all levels to the cruelty of this parasitic affliction can only be beneficial.