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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newbie
        
(Message started by: thrapper on Nov 10^th, 2007, 6:30pm)

Title: Newbie
Post by thrapper on Nov 10^th, 2007, 6:30pm

Hi, I stumbled across this site whilst trying to find out more on Cluster Headaches.
If this is what i suffer from then I have had it for 10 Yrs+ but have my Dr has been treating me for Synusitis. Even though i kept telling him his treatments were not working he conyinued. Eventually last year he sent me to a specialist who diagnosed cluster headaches. I havent suffered for nearly 12 months but have been in pain on and off for 6 days. It can last for months but then I dont suffer for months. The only way I can describe the pain i feel is that my eyeball is being crushed from behind. My Dr prescribed me Sumatriptan 50mg but they had no effect at all, so he prescribed me Fenactol 50mg to be taken with Co-Codamol30/500. The Dr has told me if these dont work then I jast have to live with it, it is very frustrating speaking to him as he doesnt seem to understand or care. I have looked at the kip scale and would say i have never gone over a 6 but it is still excruciating pain when it is in full flow.
Can anyone offer me any advice
Ta

Title: Re: Newbie
Post by Bob_Johnson on Nov 10^th, 2007, 9:08pm

Go the the OUCH site (button, left) and find your way to the UK group. There you can find some local information.

Exploring the U.S. OUCH site will give you much information to start learning about cluster. Look at the other buttons also: medical info, etc.

Title: Re: Newbie
Post by MR_FLOOR on Nov 10^th, 2007, 9:46pm

I agree with Bob you need to find a doctor that understands what you are going through and specializes in CH so he can find a prevent that works for you.

Also if he is going to give you Triptan he should give you the injections 6mg the 50 mg pills don't usually work for CH cause they take to long to kick in. Also just a thought ,have you tyied any energy drinks yet,Red Bull,Monster ect.... Anything with the combination of Taurine and Caffeine in it. At the first sign of being hit slam 1 or 2 (as needed)down as fast as you can. I know I sounds funny but it does work,remember as fast as you can. Good Luck TA. Keep us posted.

Dave

Title: Re: Newbie
Post by Emily on Nov 11^th, 2007, 6:15pm

Hello,

It can be hard finding a GP to listen, but there are some good ones out there.

You need to avoid the co-codamol. Codeine makes things SO SO much worse for me. Get yourself some red bull and try that when you start feeling it coming on. The other things I use are ice packs and strong coffee (when it's too late to drink Red Bull).

Feel free to PM me for a chat if you like.

Em

Title: Re: Newbie
Post by Spartan1128 on Nov 12^th, 2007, 9:39pm

Welcome!

Yes, caffeine seems to work for me and quite a few others... My pain is a 7 or 8 on the Kip scale. I usually end up drinking two cups of coffea and then the pain is gone in 10 to 15 minutes. I don't know if it will work for you though... You have to find what works for YOU.

Title: Re: Newbie
Post by Guiseppi on Nov 12^th, 2007, 11:04pm

Sorry you're getting the run around from the doctors, it's bad enough to suffer with these things, but then to have a doctor telling you "you just have to deal with it"....sheesh!!! :-/

Read like a mad man, make yourself into a walking talking encyclopedia of knowledge. Then find a doctor who will listen to you. Ideally you will eventually develop a 2 pronged approach to this thing,

1: a preventative strategy. A medication you take while you are on cycle which reduces the frequency and intensity of your hits. I use lithium, others use verapamil and topomax.

2: an abortive strategy. You start getting a headache now what. Oxygen needs to be your first line abortive, It's the most effective for me and no side effects. Other popular abortives are imitrex injectables, (very expensive) caffeine either in coffee or in energy drinks where it's combined with taurine, rock star monster etc.

I won't bury you in info now but start reading, you need to be your own advocate. If you sit and wait for others to cure you you'll spend a lot of time in pain.

Guiseppi