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chopmyheadoff
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miracle cure !!
« on: Jul 10th, 2006, 5:09am » |
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Hi all !! What an amazing site - i have been suffering from what i now can refer to as "kip 10" chronic cluster headaches for the last 6 years.
I have only been diagnosed about a month ago and have been trying all sorts of different painkillers before that, all to no avail.
I couldnt believe the frightning intensity of the pain i was in and i cant tell you how good it is to know there are others out there who DO know !!
Anyway, after reading through your site and all the trreatments that people are having - no body has mentioned sumitriptan. why is this ??
it is a miracle cure that aborts ch instantly. The first time i tried it and it worked i cried for about 2 hours with relief that i could finally get my life back.
Why does no body else get prescribed this mirraculous drug ? I first tried the nasal sprays and on discovering that this worked 100% of the time in about 15 minutes i was then prescribed the "imigran subject" which is a self injection kit of the same drug.
Now , as soon as the beast starts to raise its ugly head, i have a quick jab and voila !! CH gone.
is it just in the UK that this is used ??
if so then i STRONGLY urge you to kick up a fuss and not leave your GP's surgery until you have a script for this.
any thoughts ??   
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Filbert
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Re: miracle cure !!
« Reply #1 on: Jul 10th, 2006, 5:23am » |
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Hi Chopmyho,
I'm not sure if you're joking here but hundreds,no thousands of people here have used /are using sumatriptan. It is also called Imitrex and Imigran. The subcutaneous form is currently the only licensed med for CH in the UK. Have you tried 02?
Fil.
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unsolved1
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on Jul 10th, 2006, 5:09am, chopmyheadoff wrote:Anyway, after reading through your site and all the trreatments that people are having - no body has mentioned sumitriptan. why is this ??
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The first thought that comes to my mind is that you didn't read much here on this site. Imitrex (Sumatriptan) is all over this place. Did you happen to see the "imitrex tip" button over on your left <---------------- ? Did you see the "medication survey"? (Imitrex is tops on the list)
Imitrex is no secret and certainly not used only in the UK. I agree that it is a miracle drug, but it is not a 'miracle cure' (since it will not stop future attacks)
Thanks for sharing anyways and glad you finally found it!
Goodluck
UNsolved
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chopmyheadoff
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Re: miracle cure !!
« Reply #3 on: Jul 10th, 2006, 6:01am » |
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on Jul 10th, 2006, 5:49am, unsolved1 wrote:
The first thought that comes to my mind is that you didn't read much here on this site. Imitrex (Sumatriptan) is all over this place. Did you happen to see the "imitrex tip" button over on your left <---------------- ? Did you see the "medication survey"? (Imitrex is tops on the list)
Imitrex is no secret and certainly not used only in the UK. I agree that it is a miracle drug, but it is not a 'miracle cure' (since it will not stop future attacks)
Thanks for sharing anyways and glad you finally found it!
Goodluck
UNsolved
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i read the site "cover to cover" but must have missed the part where it says that imitrex is another name for sumitriptan.
sorry for the confusion.
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chopmyheadoff
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Re: miracle cure !!
« Reply #4 on: Jul 10th, 2006, 6:03am » |
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and on a further happy note , as soon as my gp found out that these worked she prescribed me 24 of them !!
i love her
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LeLimey
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Re: miracle cure !!
« Reply #5 on: Jul 10th, 2006, 7:55am » |
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Hello chop!
Nice to meet you - but sorry its because you have CH.
I'm glad you have a good GP, that makes all the difference.
I do understand your confusion about generic and brand names for drugs too.. I wish they'd pack that crap in but we're stuck with it I guess.
Imitrex is Imigran in the UK just to further complicate the issue so it's actually referred to by three names on this site.
That isn't the only different med name between the US and the UK either so you might find OUCH UK a useful site to have a look at. It's aimed specifically at UK ch'ers and its full of wonderful people like meeeeeeee! 
There is a support board for non members and a helpline which is manned by volunteers all of whom have CH. Its an answerphone so call and leave your number and someone will call you back.
There is also a members board where the fun just never ends! (Actually it can be bloody hilarious)
And then there is a section of the site aimed specifically at GP's here which you might like to show your GP too.
Have you tried O2? Wonderful stuff, can't praise it enough. Have a read up about it here and on the UK site.
How long have you had CH? How long do your hits and cycles last? Lets see if there isn't anything else we can do to help 
Helen
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chopmyheadoff
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Re: miracle cure !!
« Reply #6 on: Jul 10th, 2006, 8:20am » |
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why thank you Helen !!! Its nice to be with people who understand each others plight !!!
Iv been having these aweful suicide headaches for 6 years since i was 21. I have been messed about with nurses telling me they are tension headaches, telling me i should be "more brave !!!", sinus headaches , all sorts.
I have been given propanalol, amytriptaline etc etc etc all to no avail.
I thought i was going crazy as it hurt SO MUCH and i felt like no one understood.
Just a couple of weeks ago i was diagnosed with chronic ch and prescribed the imigran and like i say above, i wept with delight.
I dont mind getting a headache now as i just jab the imigran and its gone before i count to 20 !! 
im really sorry to read that this doesnt work for some people, my heart really goes out, my last cluster was the worst ever and i really did consider suicide it was a 10+ on the kip scale
My nurologist is sending me to the queens medical centre in london to see a renound professor to take part in oxygen trials because the whole oxygen prescribing is up in the air at the moment in uk and its hard to get it !!
Thanks to all for being so welcoming
i pray for you all for pain free days.
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chopmyheadoff
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Re: miracle cure !!
« Reply #7 on: Jul 10th, 2006, 8:25am » |
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sorry, im getting excited and didnt answer your q's . .
im chronic, my cycles last about a week
then i get a max of a week off.
i get a mild(kip 6) in the afternoon and then a monster of a 10 at about 7pm every night. it really is like clockwork !!
as well as this i have completely random attacks that vary completely in intensity and duration.
sometimes i wake in the morning with one, sometimes about an hour after i go to bed, or sometimes just sat at work
sometimes they hurt like hell but only last 15 minutes, sometimes they dont hurt so much but last a couple of hours, sometimes they go off the scale and last for a couple of hours 
anyway, now, thanks to the imigran (imitrex ) they now last about 20 seconds !! 
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LeLimey
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Re: miracle cure !!
« Reply #8 on: Jul 10th, 2006, 8:30am » |
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That would be Professor Peter Goadsby who is world reknowned in the CH field not just in the UK.
He is lovely, a really nice man who genuinely cares about ch'ers. He treats my four year old who has episodic CH and not only does he remember him but he remembers me and stops to say hello when I meet him (I visit lots of ch'ers there!) You couldn't be in better hands and if you get the chance of a referral GO! There are people worldwide who would sell a kidney to see the big guy.
Actually, its the Institute of Neurology in Queens Square, Queens Medical Centre is in Nottingham and my neuro - much as I love him to bits - is NOT world reknowned (yet!)
Enough nit-picking though - lets be useful if not decorative!
The O2 prescribing guidelines did all change in the UK back in January along with how O2 is distributed which has caused a lot of confusion.
You don't need to see PG to get o2 though.
Your neuro or GP can prescribe it, they just need to fill in a HOOF for you. You might like to contact OUCH UK's Oxygen officer, Tom Nash, for more help. I'll get him to come and look at this thread for you.
There has just been the biggest ever study on the use of O2 for CH completed at QS and whilst the results aren't published yet I can tell you its all good and if your doctor wants to phone the ION for prescribing guidelines they will be happy to help.
If you want to pm me a phone number or email addy I'll pass it on to Tom for you or alternatively put a message for him on the Support board at OUCH UK.
We'll get you sorted!
Helen
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LeLimey
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Re: miracle cure !!
« Reply #9 on: Jul 10th, 2006, 8:35am » |
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SOrry forgot to ask if you are on any other meds such as verapamil or other preventatives or whether you JUST have Imigran?
You might want to consider Frovatriptan or "Migard" since you have some very predictable hits there.
Frova is a pill and it's about as much use as a cloth crash helmet when used as an abortive. It takes up to two hours to kick in so if you took it at about 16:30 you wouldn't get your 19:00 hit at all. It also has a half life of up to 26 hours so you can guarantee a good nights sleep or a PF day.
The only downside is it can cause hits to come back harder so you shouldn't use it more than 2- times a week.. its a useful tool though.
As with all triptans you must NOT take more than two doses in 24 hours though okay?
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chopmyheadoff
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Re: miracle cure !!
« Reply #10 on: Jul 10th, 2006, 8:45am » |
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ok thank you i will talk to neurologist about this.
He has prescribed me verapomil 240mg a day and also a "kickstart" of some kind of steroid as the verapomil can take 5 weeks to get in the system
I havent taken the steroid though as the dose was huge and as i am not on cluster at the moment, and because i have the imigran on standby i think ill be ok.
when i have more than one hit a day, only one of them is a monster (usually) and although the others are about a 6 or 7 i can usually just sit off for half hour and "will it away"
its the "main evening hit" that is always the killer.
on a side note, my neurologist says he is a good friend of and works closely with the prof, thats probly why he is so understanding and dilligent in his work !!
Dr Silver is his name should anybody from the warrington area need him !!
Thanks again for being there !!
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LeLimey
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Re: miracle cure !!
« Reply #11 on: Jul 10th, 2006, 8:59am » |
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Dr Silver is well known to OUCH and highly respected by them.. if you are seeing him you are lucky and you don't need to be in better hands!
The steroid is prednisolone and the dose I'm guessing is about 80mg a day?!
Just call me no shit Sherlock!
Pred will knock your ch's deader than a dead thing - its very commonly used as both a steroid taper while waiting for Verap to kick in and also as a holiday break med.
It can have some nast side effects if used for too long but generally its only used for 2-3 weeks tops and when it's granting you instant relief almost you do have to weigh up the odds.
240mg is quite a low dose of verap so I'm guessing thats a starting dose and you are meant to up it after a week or so? You should have a ECG at the start of taking it and also at every increase as it is a blood pressure med. Most people seem to find relief at about 480mg with some managing on lower doses and some needing vastly larger ones. Its a case of trial and error to find your place on the scale.
It's difficult when you see a neuro, you're bombarded with info, you forget what you want to ask, I know, I've done it too!
If you have any questions we can help with then just fire away. Don't forget each and every one of us was new to the board once
Helen
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chopmyheadoff
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Re: miracle cure !!
« Reply #12 on: Jul 10th, 2006, 9:31am » |
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you are clued up arent you ??
yes, he is amazing and really gives the impression that he has a lot of time for you.
I did have an ecg and am going back on thursday to have another and i guess he will up my dose then.
The dose of the steroid was 120mg a day the first day and then tapering down.
as i said though, im not going to take them because if im perfectly honest i was taking anabolic steroids up until recently and the chemist said it might not be a good idea as the dose is quite high.
Im just full of aprihension that the imigran will stop working or something, iv suffered for so long now that it seems a bit surreal that i have an answer !!!
love and peace
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astings
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Re: miracle cure !!
« Reply #13 on: Jul 10th, 2006, 10:20am » |
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on Jul 10th, 2006, 8:30am, LeLimey wrote:The O2 prescribing guidelines did all change in the UK back in January along with how O2 is distributed which has caused a lot of confusion.
Your neuro or GP can prescribe it, they just need to fill in a HOOF for you. You might like to contact OUCH UK's Oxygen officer, Tom Nash, for more help. I'll get him to come and look at this thread for you.
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Hi Chop
Please check your email regarding O2 therapy in the UK
If any other sufferer needs any help / information on getting oxygen in the Uk, please do not hesitate to Email / pm me.
Tom
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JohnM
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Re: miracle cure !!
« Reply #14 on: Jul 10th, 2006, 10:21am » |
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I have been using Imigran Injections since about 1995 when I finally met a doc who understood what CH was. The first time I used it I was elated with the result. Since then I have lost count how many I have injected. They have never stopped working for me. I reckon if it works for you now it will always work for you. My 2p worth.
Not a miracle cure unfortunately but it was the very first thing that ever worked to stop the pain in over 30 years of trying everything else my doctors prescribed, including the usual stuff that came with it - like suck it up its only a headache, its migraine, don't drink red wine, take lithium, cerebrex, and numerous other I can't even recall.
I stopped using Prednisone a few years ago. They stop the CH when you start with the big dose, but 5 days later they always came back with a vengeance, no matter how long I took it for or how long the taper lasted! I swear they significantly increased my cycle time (I'm episodic)
Glad you found a good doctor.
Cheers
John
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unsolved1
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on Jul 10th, 2006, 9:31am, chopmyheadoff wrote:The dose of the steroid was 120mg a day the first day and then tapering down.
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Holy crap  120mg of Prednisone (I assume) is quite a hefty dose ! If someone were to take that amount, I would hope the taper would be quick (like 2 weeks or less). Taking doses like that will cause side effects REAL QUICK !! Most start out at 60 - 80mg a day then taper. Never heard of anyone starting at 120mg.
Goodluck
UNsolved
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LeeS
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Re: miracle cure !!
« Reply #16 on: Jul 10th, 2006, 1:15pm » |
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Have to agree with you UNsolved. Here are the Institute of Neurology 'guidelines'*:
"The most effective and fast acting steroids are called corticosteroids. However, careful monitoring of the sufferer is necessary because of the potential for serious side effects. Treatments are normally limited to between 2-3 weeks whereby the amount of drug taken over this period is reduced over time. The tablets, called prednisolone (1mg per kg), are prescribed starting at a maximum dosage of 60mg once a day for five days, and from then on, a decreased dosage (by 10mg) every three days. Unfortunately, this necessary 'tapering' effect (reducing the dosage) means that in most sufferers the CH returns, and for this reason, steroids are only used as a first-step treatment alongside other preventatives until these become effective."
*My interpretation but checked by them (2004)
-Lee
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chopmyheadoff
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Re: miracle cure !!
« Reply #17 on: Jul 11th, 2006, 2:56am » |
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doh, my bad !!
I checked at home and the tabs are only 5mg each, and NOT 10mg like i thought they were.
so 12*5=60
sorry for confusion 
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LeLimey
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Re: miracle cure !!
« Reply #18 on: Jul 11th, 2006, 3:49am » |
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We'll forgive you - we realise you are one of the weaker sex
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Godfrey
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Re: miracle cure !!
« Reply #19 on: Jul 11th, 2006, 5:35pm » |
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Do any of you find that the injection just does not keep the devil away long than an hour or 2? Where as pills tend work for about twice as long? How about overdose? I think we all pretty much overdose on this stuff for days/weeks/months on end any serious ramifications.......not that I would stop considering the alternative.
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thomas
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Re: miracle cure !!
« Reply #20 on: Jul 12th, 2006, 5:40pm » |
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on Jul 11th, 2006, 5:35pm, Godfrey wrote:| Do any of you find that the injection just does not keep the devil away long than an hour or 2? Where as pills tend work for about twice as long? How about overdose? I think we all pretty much overdose on this stuff for days/weeks/months on end any serious ramifications.......not that I would stop considering the alternative. |
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See "rebound headaches".
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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mynm156
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Re: miracle cure !!
« Reply #21 on: Jul 12th, 2006, 6:28pm » |
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Welcome aboard!!! Sorry that you are one of us but very glad that you found us!!!
Your Brother-in-Pain
MYNM156
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unsolved1
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'Ramifications' (for me) = pain relief
I pop Imitrex injections like candy ! Works everytime
UNsolved
Disclaimer: "do as I say, not as I do" ... ever heard that before? Serious cadiac 'events' can result from using or overusing Imitrex. My advice is to take it ONLY when you have to !
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Summerbabe
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Re: miracle cure !!
« Reply #23 on: Jul 13th, 2006, 8:16am » |
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Umm are you kidding? we all use triptans...we have too , it is what works best along with channel blockers. BUT THE UTMOST IS O2....Summer
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MorePower
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I use Imitrex only in Public because I have hard time coping with my attacks in public or when I have a KIP 10 in my sleep. My neurologist told me not to use more than 10 injections per month. Also the trex gives me 10 fold more attacks. So i use it sparingly. I am chronic. It does work awesome. I have never had the weird sensation that some speak about, only it makes me feel drowsy for about an hour and makes me feel kinda stoned. I have another Nuero appoint this week and I will ask her what problems will arrise if I take more than 10 inj per month because I believe that I have gone well over 10 in the past 30 for sure.
Good luck my friend, and have a pain free day
Keep the good fight
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