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(Message started by: headcrack39 on May 20th, 2006, 1:38pm)
Title: hi
Post by headcrack39 on May 20th, 2006, 1:38pm
names paul im 39 and from the uk suffered with clusters since my mid 20's been in a cycle for about the last 3 or 4 weeks take verapamil but would like to know of any better treatments
Title: Re: hi
Post by marlinsfan on May 20th, 2006, 2:02pm
Hi Paul, welcome. Here's a document that has lots of info on meds/treatments. Names of meds may be different in the UK.

http://www.brightok.net/~mnjday/chtherapy.pdf
Title: Re: hi
Post by BobG on May 20th, 2006, 4:12pm
Head'C
check for answers over at your string under Cluster Headaches Specific section.
Title: Re: hi
Post by ski2k on May 20th, 2006, 5:36pm
OXYGEN!!! I suffered for about fifteen years before I found this site and the biggest help I found was oxygen.
The emotional support you get here also helps a lot, but for true medical help, O2 seems to work for me. Keep in mind, it doesen't work for everybody, but does help a lot of us clusterheads.
Check out the information all over this site. Especially the O2 info. I think it will help.

Sorry you have to be here, but glad you found us!

PF (pain free) wishes to you!!

Ski
Title: Re: hi
Post by Richr8 on May 20th, 2006, 6:13pm
Hi Paul,
You are in good hands.  Glad that you found us.  Yes, Verapamiil is a good preventive for many at the right dose.  I take 480mg while in cycle.  I also do Prednisone tapers to break my cycle and I use Oxygen as an abortive to stop an attack. O2 is effective for me 60% fo the time and has fewer side effects, if any, than any other abortive tratment.  Read all that you can and keep us posted on your progress.
Title: Re: hi
Post by Dave on May 20th, 2006, 9:45pm
Tons of other treatments, but you should probably ask your doctor.

Prednisone+verapamil is a common second recourse.
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 8:51am
thanx for the advice its much appreciated
Title: Re: hi
Post by LeLimey on May 21st, 2006, 9:38am
Hiya!
Welcome - sorry you have to be here but let's see what we can do to help.
I know I'm a pain in the bum but I have to ask a few questions - you mentioned verap, is that th eonly med you have or do you use any abortives such as imigran or oxygen?
How long do your cycles usually last? How often do they occur? IE one cycle of X weeks per year or what?
Have you found OUCH UK? Its a UK charity set up for cluster sufferers. There is a support board where you can ask questions, a help line manned by sufferers who will help answering any questions, tons of info on meds (and their names in th eUK which is good to know!) There's also a members board if you join,  full of charming, intelligent, lovely people... oh and I'm a member too  ::)

http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD

Let us know what meds you have tried and how you got on.. there is loads of info between the two sites and lots of other alternative therapies you may like ot read up on too.
Two other sites well worth a look are Flo's site,
http://www.med-owl.com/clusterheadaches/tiki-index.php
and speaking for itself
www.clusterbusters.com

Come back to us with any questions and answers and we'll do all we can to help
Helen
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 9:58am
only ever taken the verapamil seem to get the attacks around the same time of year april may time can last from 2 weeks to 8 weeks but once gone dont get them back for a year or two been in this cycle for about the last four weeks now thought i'd got thru it a little over a week back had been taking my pills and had 3 or 4 days reasonably pain free but ran out of pills and they had started again in a couple of days got more pills now tho
Title: Re: hi
Post by LeLimey on May 21st, 2006, 11:18am
Hi Paul, Verap is just so much the wrong drug for you that I'm gobsmacked (and trust me, that takes SOME doing!)
Verapamil is a Blood Pressure drug, you should have an ECG on starting it and then again on every increase. It usually takes about six weeks to get up to an effective dose so given that your cycles are 4-6 weeks it is about as much use to you as a chocolate fireguard. You then have to wean down off of it too not just stop it over night which, if you haven't been doing, is risky and not to be recommended by anyone least of all a doctor.
Verap is one of the drugs we call a preventative, ie it works on the cycle rather than individual hits. Its generally only used for people who are chronic or who have very lengthy cycles and yours are pretty short even if it doesn't feel that way!
You would be better off using abortives. IE Imigran injections (not pills or nasal sprays) Zomig nasal sprays or, my favourite, o2 at a high flow rate of 15LPM through a non rebreather mask.
All of the above are vaso constrictors and work by constricting the blood vessels in your head. In a hit the blood vessels on your ch side will expand by up to 20 times their normal size which is what causes the excruciating pain. To stop the pain you need to get them back to normal asap hence the drugs suggested.
O2 will abort a hit for me in 5-7 minutes and its just fantastic as there are no side effects. Imigran is actually the only drug licensed for CH in the UK although you might find your doctor reluctant to prescribe it as it is very expensive. Dont be fobbed off, you need the injections as nothing else works fast enough and it also states in the Doctors BNF that to withold on grounds of cost is unethical. I myself don't like triptans, I don't like how they make me feel but that's a personal issue and its all of our right to make our own choices which is why I'll give you all the info and let you ask questions or make your own decisions accordingly  :)
Have you seen a neuro? If not demand a referral to see one too. CH is a rare illness and requires a specialist to understand what meds you will need and why.
I know how confusing it is to be given a load of info when you aren't used to having much, please feel free to ask questions, we don't bite (well.. not hard!) and we'll help.
Helen
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 11:42am
yeah i know about the weaning off them and stuff my doc dont like giving me the verapamil as they react badly with other pills i take for something else always when i know im gonna get the clusters i come off the other pills straight away think im gonna get referred by my doc to the london migraine clinic that diagnosed me a few years back as a member on here has me confused as to whether or not they are even clusters now or maybe eph although the pain is really quite intense theres things i dont ever do like the throwing yourself about i find it better to try and keep as still as possible not sure if thats just the way ive learnt to deal with the pain
Title: Re: hi
Post by LeLimey on May 21st, 2006, 12:09pm
How long do your hit's last Paul and how often do you get them through the day?
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 12:15pm
not so long maybe 20 minutes think the longest they lasted was about 45 minutes usually only get 3 or 4 a day but get woken several times at night have to get out of bed tho impossible to just lay there i do remember way back in 93 tho i was getting quite alot of attacks during the course of a day i also get a sore sensation in my temple also fluttering can get attacks starting when im relaxed aswell
Title: Re: hi
Post by LeLimey on May 21st, 2006, 12:20pm
EPH is a possibility based on length of your attacks. Ask your doctor for Indomethacin, its highly effective for 80% of people with PH and starts to work very quickly.. within a week. It can be very rough on your stomach though so ask for something to protect your stomach too.. I can't remember the name of what I had when I tried it but your doctor will know what to give you.
IF you do have PH please ask your doctor to refer you to see Professor Goadsby at The Institute of Neurology in Queens Square. PH is considerably rarer than CH and Prof Goadsby is always keen to treat people with PH.
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 12:24pm
dont sound good i got a pretty messed up stomach as it is but anythings worth a try i guess just wanna lay down and sleep but know im gonna get woken by the pain kinda grouchy aswell but think thats my age lol
Title: Re: hi
Post by LeLimey on May 21st, 2006, 12:28pm
Its nothing to do with your flippin' age you wuss! (Especially since you are younger than me even if it's only just!)
I have a very dodgy stomach too, much too boring to go into but several revolting bit's and bobs wrong so indo was a bit nerve wracking - I was fine though and if it's going to cure the HA pain.. go for it!
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 12:36pm
oh i was thinking maybe i had started my midlife crisis a year early hehe got the institute of neurology bookmarked now so will look into getting referred there
Title: Re: hi
Post by LeLimey on May 21st, 2006, 12:55pm
I'll give you a bloody mid life crisis! grrrrr!
Let us know how you get on okay?
Helen
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 1:06pm
yep will do thanx for the help
Title: Re: hi
Post by BobG on May 21st, 2006, 1:44pm

on 05/21/06 at 12:24:50, headcrack39 wrote:
kinda grouchy aswell but think thats my age lol

As Helen said you're not old enough to claim grouchy. You have to work at it until at least 50 years old. It is something that is earned. Says so in the bible.


Quote:
i was thinking maybe i had started my midlife crisis


I've been waiting for mine for 59 years! I really want a red sports car and some lime green plaid pants. Someday my crisis will come.
Until then I think I'll just go buy a Corvette anyway.
;;D
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 2:10pm
must be something else then and green pants their gonna be a bit loud aint they lol
Title: Re: hi
Post by BobG on May 21st, 2006, 2:53pm
It's an American thing. Required by the Constitution.
But, a bright red jacket, a wide whit patent leather belt and shoes to match will tone down the lime green pants.
::)
Title: Re: hi
Post by headcrack39 on May 21st, 2006, 3:01pm
yep probably golfing shoes  [smiley=laugh.gif]
Title: Re: hi
Post by BobG on May 21st, 2006, 3:17pm
Quite right. While lunching at the country club one must appear to be a golfing sort (without actually have to play the game). ;)


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