Hi Guys,

my name's Tim, I'm 22 years old and I currently live in Germany. Originally I'm a Brit though.

I made my first experiences with the cluster beast at age 10. I wouldn't get a proper diagnosis (chronic cluster headache) until I was 16 though. So yeah, that's pretty much of a long time now. I've basically tried everything in terms of medication now- Verapamil, Lithium, Methysergide, Topiramate etc. They all work in one way or another. However, after a while I always suffer severe side effects which force me to stop taking them again.  For example, I got bad arrythmias from the Verapamil and Lithium would put me into weird mental states...lol Topiramate remains the only med which I can tolerate relatively well at the moment. I do get cognitive problems from it but they're better than having to put up with 5 full-blown cluster attacks a day!

However, I still suffer 4 mild attacks when under Topiramate so it's not perfect yet. From the looks, I'm now slowly heading towards surgery (occipital nerve stimulation) because there isn't really anything else left to try anymore. In February I'll try DHE infusions. If they don't work I'll probably have go to for occipital nerve stimulation to finally get some relief.

I'm with a brilliant neuro by the way. I absolutely trust him. He's an excellent scientist.

That's it from the cluster side. Apart from having to deal with cluster headache, I'm a student (currently Business IT but moving onto medical school next year eventually). I'm obsessed with science, do lots of exercise and love music.

Have a nice day everyone and lots of pf days,
Tim

A list of knowledgeable German doctors is available at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

A list of German support groups is available at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Welcome Tim!
Definitely stay here chatting with all of us but ABSOLUTELY check out ck.wissen for more local info for you. It is a wonderful site with really comprehensive information and I would highly recommend it to anyone living in or visiting Germany.

I'd also absolutely urge you to try O2 again. Changing your mask can make all the difference. I use an optimask (available through the store here on this site) and can abort an attack in 5-7 minutes. It's just wonderful, I can't praise it enough!

Good luck with the DHE!

Helen

Nerdy nerds are good - we make them do the washing up here and all the other grisly jobs. Get your marigolds ready Tim 

Seriously though, a good archive of info is a powerful weapon! That's really good to hear. We can all benefit from your reading now!

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Oh I don't mind that. I always do the washing up!   But.... Before I generally agree to anything- which other girly jobs are you talking about?  =D

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That's good . I'm obsessed with science, especially in connection with the human body. That's basically why I wanna study medicine. Unfortunately, the cluster beast has always prevented me from getting started. However, now it seems I have things under control much better than a few years ago (back then I didn't even receive proper treatment).

I might move back to the UK soon. But I'll start a new thread on that in a minute cuz I got a few specific questions regarding the health system in the UK.

gizmo wrote on Dec 9^th, 2009 at 11:38am:


Cheers!

Luv,
Tim