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Cluster Headache Help and Support >> Getting to Know Ya >> yet another newbie ;) http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1260358143 Message started by hypothalamus on Dec 9th, 2009 at 6:29am |
Title: yet another newbie ;) Post by hypothalamus on Dec 9th, 2009 at 6:29am
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 |
Title: Re: yet another newbie ;) Post by lorac on Dec 9th, 2009 at 8:12am
Welcome to the Family Tim.
Sounds like you have the biggest hurdle licked,,,,,finding the right doctor! Have you tried the O2? lorac |
Title: Re: yet another newbie ;) Post by Jrcox on Dec 9th, 2009 at 8:40am
Welcome tim. Get o2. What may work for us once may not or vise versa. Glad to see you found us.
All the best Jrcox |
Title: Re: yet another newbie ;) Post by LeLimey on Dec 9th, 2009 at 8:45am
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 |
Title: Re: yet another newbie ;) Post by hypothalamus on Dec 9th, 2009 at 9:39am
Hiya everyone,
thanks for your advise =D. I actually forgot to mention that, I'm the most nerdy nerd you can possibly imagine so I know pretty much about CH, especially in terms of its pathogenesis. :D I've read most of the major scientific papers on cluster headache (and headache in general). Also, I completely forgot to mention my abortive treatment. I use zolmitriptan (nasal spray) and O2, both of which work for most attacks- not all of them. Thanks very much for the advise about the mask by the way. I'll definitely try and get one of those! Luv, Tim |
Title: Re: yet another newbie ;) Post by LeLimey on Dec 9th, 2009 at 9:45am
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! |
Title: Re: yet another newbie ;) Post by gizmo on Dec 9th, 2009 at 11:38am |
Title: Re: yet another newbie ;) Post by LeLimey on Dec 9th, 2009 at 12:43pm hypothalamus wrote on Dec 9th, 2009 at 12:19pm:
ALL OF THEM DUMMY!! Quote:
Well trained too! Quote:
Cut out all those unnecessary words and you can find some interesting stuff... ;) |
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