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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> English Newbie
        
(Message started by: Big_Pete on Feb 24^th, 2007, 12:20pm)

Title: English Newbie
Post by Big_Pete on Feb 24^th, 2007, 12:20pm

Hi, my name is Pete, i'm 17, and I have just been diagnosed with Cluster Migraines. I've been suffering for 2 and a half years now, starting with 1 attack a week, every Tuesday afternoon at the same time. However, over the last year my attacks have increased to 2-3 times a week, with 2-3 hits a day. I finally plucked up the courage to go to my GP yesterday who quickly diagnosed me with Cluster Migraines, as well as sending me for tests for Diabetes. To counter the Migraines, i was prescribed with Propranolol, which my doctor said could come with some pretty stong side effects.

So, many thanks for listening to my life story and if anybody has any information about Propranolol then please reply.

Many thanks,

Pete

Title: Re: English Newbie
Post by thebbz on Feb 24^th, 2007, 12:38pm

Do you all have google on the other side of the pond?
Inderal is a beta blocker. It is a treatment for CH.
http://en.wikipedia.org/wiki/Propranolol
happy reading and welcome.
jb
No abortive??? Imitrex, 02,coffee,anything???

Title: Re: English Newbie
Post by Bob_Johnson on Feb 24^th, 2007, 2:26pm

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

-------
Click on the OUCH button and find the link to the UK branch. Excellent group for support and information about local medical issues.

Title: Re: English Newbie
Post by jlk on Feb 25^th, 2007, 11:37pm

Hey Pete! Hope the inderol works for you but I agree with the other folks, you really need an abortive a/k/a/ something to stop the demon once it starts. Most of us find imitrex is very helpful but if you don't have it yet, a cup or two of strong coffee helps (caffeine is a vasoconstrictor that will tighten off that supply of blood that is rushing up to your brain and causing trouble). Oxygen works for quite a few people. Anyway, find one that works for you soon!

Best,

jules

Title: Re: English Newbie
Post by LeLimey on Mar 3^rd, 2007, 3:50pm

Hi Pete
Your bloody doctor wants shooting - or to be taught how to read his BNF >:( Propranalol is an old treatment for CH and there is much better stuff available. To leave you without any abortives for each hit is downright criminal as well.

You are going back to the doctors hon and you are going to demand a referral to a HEADACHE SPECIALIST neurologist. I can't stress that enough, neurology is a huge field and seeing one who specialises in MS for instance is going to be about as much use to you as a chocolate fireguard.

You also should have abortives, drugs which will stop an attack once they start. Propranalol is a preventative and as such should work on the cycle rather than individual hits but it doesn't have a particularly good record and it takes a while to kick in.

You being left to suffer is unacceptable but sadly, CH meds are expensive so your doctor is trying to pull a fast one.

Your doctor should look in his BNF (doctors prescribing bible) In it is stated quite clearly that theonly licensed treatment in the UK for CH is Imigran injections. NOT pills and NOT nasal sprays, neither work quick enough.
The injections are only one of those clicky pen things, they go just under the skin so aren't a big thing and seeing as how they will abort an attack in 5-10 minutes its well worth stabbing yourself!

The other treatment I can't recommend enough is Oxygen at 15LPM through a non rebreather mask. This will be delivered direct to your home and your doctor just needs to fill in a hoof (home oxygen order form)
Make sure he ticks "ambulatory oxygen" so you get portable cylinders and also writes Cluster Headaches in the comments box so the O2 forms know to deliver the right set up and masks to you.

If you need any more help or advice please, please come back, we'll do all we can to help you okay? You are NOT on your own with this!

Helen (Nottinghamshire)

Title: Re: English Newbie
Post by BB on Mar 3^rd, 2007, 3:57pm

Hi Pete

Welcome and painfree wishes to you.

Just want to clarify, do you have cluster headaches or cluster migraines ? they are different !

Annette

Title: Re: English Newbie
Post by L2D01 on Mar 4^th, 2007, 7:50pm

Hey Pete,

I know what your talking about (also diagnosed with cluster migrain, also in GB, also relatively young (18) and also not likeing the strong side affect) I have been takeing Indomethacin profolacticly and also diclofenac/ pizotifen to abort the headaches and have found the profolactic really good. Also, the guys here are spot on, cafine is really effective, red bull, pro pluss, coffie or anything can really help if you have lots when you feel the headache commeing on. If your having big trouble with the sideeffects of the drugs your being given, talk to your doctor or a specialist, there are lots of variants of Propranolol, but also be carefull of asking for things such as imitrex without trying out other options. Differnt things work for differnt people so experiment and find what works best with the least side effects.

Title: Re: English Newbie
Post by Big_Pete on Apr 9^th, 2007, 9:00am

thanks for all the advice guys, its all been so helpful! ive found that red bull is so effective and have therefore spent a lot of money making sure im never out of it.

Title: Re: English Newbie
Post by BrianJ on Apr 9^th, 2007, 10:51am

Welcome pete these guys are great on here you are in the right place

Brian (liverpool)

Title: Re: English Newbie
Post by jlk on Apr 9^th, 2007, 12:38pm

hey Pete!

Hope things are getting better for you! I agree that googling any and all meds is a great idea -- you can save yourself alot of trouble that way. Also, try drinking lots of water. For one thing, it won't hurt in cushioning your system from all the meds and caffeine (a diuretic). for another thing, something seems to be reducing my number of attacks dramatically and drinking loads of water is one thing I've been doing. At the risk of offending others here, you might get your neck checked and make sure that there's no disk out of place since I had a disk out; when it is in correctly I get much fewer headaches. My doc has successfully treated quite a few migraine and cluster patients in this way. Best of luck!

Title: Re: English Newbie
Post by Yorky on Apr 9^th, 2007, 2:11pm

welcome...big pete.....

http://i93.photobucket.com/albums/l62/yorky_2006/Leeds-1.jpg

who~~what~~ are you ? ;;D

Title: Re: English Newbie
Post by Rosybabe on Apr 9^th, 2007, 8:51pm

Hi Pete!

welcome aboard!!
Hope you find the right combination of medicines for you, the sooner the faster you will be PF!!

Good Luck!

Title: Re: English Newbie
Post by Sandy_C on Apr 10^th, 2007, 1:13pm

Another Brit! Think LeLimey is trying to take back the colonies??? ;;D

Just kidding, Pete. Welcome home. Pull up a chair and get comfy, and read, read, read. There is more information on these boards about CH than you will find probably anywhere in the world.

And, listen to Helen (LeLimey). She is the resident Brit Mum, and has been known to ride a broomstick now and then, but is beloved by all of us.

Sandy