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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> back in the ring
        
(Message started by: Jacob22 on Jan 24^th, 2005, 2:24am)

Title: back in the ring
Post by Jacob22 on Jan 24^th, 2005, 2:24am

hello all
well two years without a cluster and i thought i had them beat (by far the longest remission). At the end of my last bout i had an appointment with a neurologist who prescribed topomax. I had no faith at all in the guy he basically tapped my reflexes, told me nothing, and handed me the prescription.

I never filled the prescription as i was in remission and it has expired. I'm hearing scary things about it, so looking for any input on it and anything new short term or longterm.

This cluster is really bad, I'm not coping well at all, this attack is the most severe yet, seems to have made up for reduced frequency in intensity

first time i've gone on line with this, really good(though not for you) to see i'm not completely alone. don't quite feel like such a freak

Title: Re: back in the ring
Post by taraann on Jan 24^th, 2005, 2:56am

Welcome Jacob and sorry your Ch's are back again. I personally don't have any experience with Topamax (one of the very few things it seems I haven't been on) I am chronic and currently having success with Verapamil and Lithium. I have read alot of ppl talk about Topamax, take a swing over to the medications board and/or do a search on Topamax (up at the top of the page).

What have you used to abort your CH's? Click those links over on the left and read read read. Alot of ppl have found relief with oxygen and/or imitrex injections.

Have you made an appt with your doc or another doctor? If you aren't comfortable with your last doc maybe you should try to find another?

Well welcome to the bin...board ;) Stick around, tons of support and info here. Glad you found us, but sorry you have a reason to be here!

Title: Re: back in the ring
Post by Bob_Johnson on Jan 24^th, 2005, 7:22am

Stop listening to "scary stories" and start looking for facts. There are no effective meds for cluster which do not have some potential for side effects.

It's important to understand that lists of side effects are POSSIBILITIES and not PREDICTIONS of something which will occur. The trick is to be aware of what might happen, know what to look for, and then be prepared to act IF a side effects begins to show itself. But the idea of avoiding will leave you with little to help you deal with cluster.

Title: Re: back in the ring
Post by Margi on Jan 24^th, 2005, 9:49am

Hi Jacob, sorry to hear you're having such a rough time. I see you've registered over at the Canadian site as well and I thought I should tell you that we've been having problems with our password notification process. Please email me at margis@clusterheadaches.ca if you're having problem getting in and I'll get you set up, ok?

I see you live on the island - our OUCH Canada President lives in Nanaimo and he has a great doctor if you need to see someone new. You really should look into oxygen as an abortive, it's very successful and much easier on your system than Topomax (or "Dopemax" as some folks call it). By all means, be proactive with your doc, educate yourself and, in turn, educate them. Cluster is so rare, a lot of docs aren't yet current on their info (but all the OUCHs of the world are trying to change that).

Again, we're here if you need us both at this website and over at OUCH Canada. Hang in there, friend - lotsa folks here who walk in your shoes.