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Topic: Hello, newbie with an urgent question. (Read 331 times) |
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AussiePaula
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Hello, newbie with an urgent question.
« on: Jul 21st, 2005, 6:53am » |
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Hello,
I'm sorry to barge straight in with a question as soon as I join and I look foward to reading through the forum and getting to know the place a little better. My name is Paula and my husband Peter is 34 and has been suffering from Cluster Headache since he was 20.
Until his most recent episode his headaches would last for 3-4 weeks, approx 3 per day and then go into remission for 2 years, almost exactly. We have our own oxygen bottle which remains his best form of pain relief if he gets to it quick enough, however we also had the odd trip to the emergency room for a pethadine injection.
This time, due to the fact that we also have a child with a disability and things were tough anyway, we decided to try prevantive treatment. He has been on prednisone and Calcium Channel blockers. Whilst his headaches have been much less severe they have been going on now for nearly 3 months, far longer than normal.
Is it possible that the introduction of preventative medication has changed the nature of his headache cycle? Any suggestions.
Thanks so much
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Paula
Wife to Peter, Cluster Headache Sufferer, 15 years
Mum to fabulous 4 year old son.
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Topical
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Re: Hello, newbie with an urgent question.
« Reply #1 on: Jul 21st, 2005, 7:00am » |
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Hi Paula, I have read it as a theory for at least one preventative Verapamil.
I'll find the reference to it and link you up. The expert in the field who theorized this was Dr. Goadsby.
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AussiePaula
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Re: Hello, newbie with an urgent question.
« Reply #2 on: Jul 21st, 2005, 7:11am » |
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Hi Topical,
I just checked the box - he is on Verapamil - looking foward to reading your link - thanks so much!
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Paula
Wife to Peter, Cluster Headache Sufferer, 15 years
Mum to fabulous 4 year old son.
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Topical
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Re: Hello, newbie with an urgent question.
« Reply #3 on: Jul 21st, 2005, 7:13am » |
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BTW: Verapamil is another calcium channel blocker. It is mentioned in this thread. Feel free to pose your question in this thread.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1119061236;start=50
Please ignore the bickering in the thread I linked above. We all have our own 'pet theories' which we defend/debate and things can get a bit heated as they are discussed. There is still so much to learn and no one has all the answers or we would have a definite cure.
Here's one referenced study from the thread, Verapamil is mentioned further down on the page. (courtesy of PinkFloyd:
Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.
Objectives.-To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. Background.-Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. Methods.-Six CH sum-naive patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. Results.-All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. Conclusions.-Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.
Edit: Ahh Good deal, read that page, (the other pages are rather embarassing, we don't usually get into it like this.  There is a supporter board too, if you ever want to talk to others who are supporting us poor CH'ers. I hope you can stick around and bring your hubby by to join us. Have a good one, I hope he feels better soon.
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| « Last Edit: Jul 21st, 2005, 7:16am by Topical » |
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AussieBrian
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Re: Hello, newbie with an urgent question.
« Reply #4 on: Jul 21st, 2005, 7:21am » |
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G'day Paula, and no apologies for barging straight in. You couldn't have barged into a better place at a better time.
Firstly, it's important you understand that none of us here are doctors, but that doesn't stop us offering all the help and support we possibly can. And then some.
Secondly, there's no reason under the sun that his headaches shouldn't change as time goes by. Sure, there's only one beast, but it has a million disguises.
Importantly, you must be a very special sort of person. Hereabouts you're what's known as a CH Supporter, pretty much the highest form of life known to human-kind. There's also heaps of other Supporters about only too happy to talk with you, including my very own DennyM. Feel perfectly free to PM either of us anytime, only too happy to help.
There's a wealth of information here, along with an army of people who know and understand just what the pair of you are going through. We're all on your side.
Ask all the questions you want. You're amongst friends now.
Cheers from the Tip,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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AussiePaula
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Re: Hello, newbie with an urgent question.
« Reply #5 on: Jul 21st, 2005, 7:33am » |
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Thanks Brian, especially for the welcome. Peter is back to the Doc tomorrow to find out where he thinks we can stop the Verapimal and see how we go.
Thank god for O2!
Will keep you posted. Thanks so much, will sleep better tonight I think.
Cheers
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Paula
Wife to Peter, Cluster Headache Sufferer, 15 years
Mum to fabulous 4 year old son.
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Topical
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Re: Hello, newbie with an urgent question.
« Reply #6 on: Jul 21st, 2005, 7:54am » |
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Good deal Paula. I echo AussieBrian's comments.
I am just like your husband and take Verapamil/O2. I have had one occasion where it took about 2-3 weeks longer than normal. It's good to see your doctor and explain what is going on. Oxygen has definitely been a lifesaver, glad to hear Peter is finding some relief with it too.
Please let us know what the doc says. It will help to increase our own knowledge so we can pass it along to others. Take care.
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DennyM
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Re: Hello, newbie with an urgent question.
« Reply #7 on: Jul 21st, 2005, 8:32am » |
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Hello Paula
I'm Denny - Aussie Brian's supporter.
Medications are always a trial-and-error scenario. What works for one person doesn't necessarily work for the next, likewise, a med that helps during one cycle might prove absolutely useless in the next. If there was such a thing as an understanding neuro or GP, our much-challenged lives might be more peaceful. The way I see it - the medicos are every bit as mystified by the Beast as are we all.
As far as I know, Professor Goatsby is the only person in the world doing any research into the matter, and because the condition is so rare, his funding is probably minimal. I lucked-in to an interview with this man on ABC Radio National some years ago - just caught the tail-end of it. Brian was at work, but as soon as my ears homed in on the words "Cluster Headach" I was all attention, and immediately sent away for a print-out of the program. When it arrived, Brian read it and cried - because he suddenly didn't feel so alone - not that he ever is - I'm always there for him.
This site has been a Godsend for both of us. Sufferers and supporters can communicate and draw strength fom each other and nobody has to fell so alone!
You're a tremendous help to Peter just by being there, and now that you've introduced yourself to CH.com and you can both famiarise yourselves with with all the aspects of CH, you'll find heaps of help and encouragement here.
Please feel free to contact me or Brian at any time. Big fat HUGS to you, Peter and your precious little one.
Love, Prayers and Blessings
Denny
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paul_pero
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Re: Hello, newbie with an urgent question.
« Reply #8 on: Jul 21st, 2005, 9:10am » |
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Hi Paula,
I'm currently having a funny cycle too. This is the first year that any treatment has worked for me. I got O2 this year after finding out about it on this site. I Also started taking melatonin this year. This sysle is lasting longer and I seem to be getting more shadows than usual. Currently I'm getting hit only every 2-3 days. My wife thinks that the melatonin might be changing the cycle, or maybe by aborting with O2, it is not letting whatever happens to the brain usually when I get hit fully discharge whatever it is (does that make sense?). Anyhow stopped the melatonin 3 days ago. Got one this morning at 7am. Didn't use the O2 and only K6 and over in 30 minutes.
HI Denny, good to meet you. Finally know that Brian has someone to keep him in check. But I never thought Brian would be the crying type. Good to know he's like everyone else.
Paul
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AussieBrian
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Re: Hello, newbie with an urgent question.
« Reply #9 on: Jul 21st, 2005, 9:19am » |
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on Jul 21st, 2005, 9:10am, paul_pero wrote:| But I never thought Brian would be the crying type. Good to know he's like everyone elsel |
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Denny lies. Me fisherman - only tell truth!
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Bob P
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Re: Hello, newbie with an urgent question.
« Reply #10 on: Jul 21st, 2005, 9:49am » |
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Quote:| The expert in the field who theorized this was Dr. Goadsby. |
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Not quite correct. Prof. Goadsby was asked if it's "possible" that verap could lengthen a cycle. His response was that it is possible but he doesn't have enough facts to say it is so. He goes on to say that it could just be the sufferers physiology is changing and the sufferer is blaming it on verap. He still feels that high dosage verap has a definate positive role in cluster treatment.
Here are his words:
Quote:I think, in the main, that verapamil is helpful in cluster headache, especially at high dose.
It has been said to me by some patients that it lengthened their cycle or "turned" them chronic.
I acknowledge this is possible, as most things are, but I have not seen convincing evidence of it.
I think it is something we can stay vigilant about to see whether more information is forthcoming.
The problem is how to control observations and what is the context?
A patient with worsening cycles or lengthening cycles is more likley to get onto verapamil, I think. So whether the verapamil causes the change or its use is a reflection of the biology already at work, I am not sure. |
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Paula - he may be much the same as I am. My attacks started at 20 y/o. For 20 years I would have a 4 to 6 week cluster cycle every 8 to 10 months. At the age of 40 my remission periods jumped to 2 years but the cycles also lengthened to 16 weeks. I wasn't using verap so that ouldn't be the cause. I'm now 54 y/o. My last remission was 3 years and 3 months long. My current cluster cycle is now in week 19. I did use verap at the beginning of this cycle but have been off it for 4 weeks and the attacks keep coming.
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| « Last Edit: Jul 21st, 2005, 9:54am by Bob P » |
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AussieBrian
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Re: Hello, newbie with an urgent question.
« Reply #11 on: Jul 21st, 2005, 10:05am » |
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Dunno where you find that stuff, Bob, nor how. And thanks for putting it up.
Goes to show that what works for one doesn't work for another, and just because it worked this time it's no guarantee etc, etc, et bloody cetera.
To think we can put men on the moon, now they're talking about Mars, and we're still arguing with doctors about O2. Makes me spit.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Bob P
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Re: Hello, newbie with an urgent question.
« Reply #12 on: Jul 21st, 2005, 12:31pm » |
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Brian,
I was hearing different takes on what Goadsby had said so I e-mailed him and asked. The quote above is his e-mail response to me.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Kiwiinoz58
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Re: Hello, newbie with an urgent question.
« Reply #13 on: Jul 21st, 2005, 8:26pm » |
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Welcome Paula, oh she of the special breed of people known a CH supporters. Sorry you had to arrive here but at least arrive you did. This bunch are terrific, informative and supportive of all of us. Noone has "THE ANSWER" but the suggestions of meds and sites to visit etc are great! I just posted questions today about Verapamil myself, as it just doesn't seem to be helping and is possibly even making matters worse. It will be interesting to read the replies.
Good luck with Peter,
Cheers,
Jacqws
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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Kiwiinoz58
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Re: Hello, newbie with an urgent question.
« Reply #14 on: Jul 21st, 2005, 8:32pm » |
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oops that should read Jacqs
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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Lizzie2
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Re: Hello, newbie with an urgent question.
« Reply #15 on: Jul 21st, 2005, 11:33pm » |
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Bob,
I got a similar sort of response from PG when I asked him last month at the AHS conference. Somebody please fly me to London!
Hugs,
Carrie 
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Topical
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Re: Hello, newbie with an urgent question.
« Reply #16 on: Jul 22nd, 2005, 4:19am » |
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Thanks for the correction Bob.
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