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        New Message Board Archives >> 2002 Posts >> New to Board  -- My Story
        
(Message started by: spaceman on Nov 6^th, 2002, 9:12am)

Title: New to Board -- My Story
Post by spaceman on Nov 6^th, 2002, 9:12am

I'm new to the board as a poster, but as a sufferer I've followed it for years. Not sure why I didn't ever register before -- probably the same reason I never took meds (other than Advil, Tylenol, etc.) until last year. My clusters are periodic and started when I was about 20 or so. They come pretty regularly every fall (sometimes as early as September -- sometimes as late as December -- don't know -- maybe I'm on some lunar calendar and the date keeps changing like the Jewish holidays). In any event, pattern is pretty consistent -- first week or two I get a few shadows that I can pretty much shake off with some OTC meds and a busy life. Then I'll have the first one that wakes me up anywhere from 1-3 and it will be relatively mild but nothing I can sleep through. I slip out of bed so my wife can sleep, go into the family room on the other side of the house, and chew on ice with the TV on (not watching, just listening). First week or so of this it's usually an hour or so, start to finish and I get back into bed. Usually 2 or 3 nights of the first week. It increases from there. Most still occur at night, but start rising in intensity, with the left eye tearing, nose stuffing up, and the sharp grabbing, twisting, stabbing sensation behind the left eye. I'll usually have a few during the day and, this year, for the first time, I've had days of up to 4 or 5 in a day (usually one massive and then many "offshoots", kind of like and earthquake and aftershocks). Like I said, I never tried meds -- just didn't want to (always just tried to gut it out). Then last year I went for my physical when the cluster was just starting and the doc gave me Verapamil (Covera in timed release). And, like that, it was over. Nipped in the bud. No more for the season. I thought I had finally found God.

Then, this year, they came back and the Verapamil has done absolutely nothing to help them. Haven't spoken to the doc for a variety of reasons. This year's cycle started in mid-to-late September so I think (pray) I'm on the wane.

Anyway, nothing special to add, just wanted to say hi and join in. Probably took too long doing it, but, so be it. This is a great board and a great resource. Still so many people who have no idea what a cluster is.

Take care all -- hope you are as free of pain as can be.

;)

Andy

Title: Re: New to Board -- My Story
Post by sueellen83 on Nov 6^th, 2002, 10:06am

Hi!! Andy,

Welcome!!! Sorry the beast is back. :(

Hate to hear the Verapamil isn't working for you. Like you I think I have found God with this med. How many mg do you take and how often? I take plain Verapamil 480mg in the evening. Haven't taken the time released.

Again welcome and hope this is a short cycle for you!!!!

Title: Re: New to Board -- My Story
Post by spaceman on Nov 6^th, 2002, 11:38am

Thanks for the reply Sueellen. I need to check about the dosage level. I think its 240mg. The other thing is that its a timed release as it is designed to start acting in the early morning since that's when most heart attacks occur (and that's the core indication for the med). My problem is I usually go to sleep so late that it's probably kicking in after the Beast has arriven. Hadn't thought of that, but your post made me check the website for Covera so that could be part of the problem.

Thanks again.

;)

Andy

Title: Re: New to Board -- My Story
Post by sueellen83 on Nov 6^th, 2002, 11:50am

Andy,

Glad I could help. I take my pills at 5:00 in the evening. My neuro. said this would give it time to get in my system before I went to bed. Haven't had a CH since wake me in the middle of the night since I started taking thenm this way.

Good luck!! Let me know what happens.

Sue Ellen

Title: Re: New to Board -- My Story
Post by GlendaB on Nov 6^th, 2002, 12:07pm

Andy,

Sorry to hear the beast is playing his fiddle. Glad you found us, hope you will find something here that will help you through.

You may want to contact your doc and see if he will increase you Verap dosage.

on 11/06/02 at 10:49:30, Ueli wrote:

Verapamil (a Ca channel blocker) is the CH preventative of first choice.
The most important points are:

The regular (instant release) version works better than the extended release form
Clusterheads usually need a much higher dose than heart patients. Dr Goadsby says: up the dose until the attacks are suppressed. That can go up to 960 mg / day

Hope this helps!

Title: Re: New to Board -- My Story
Post by spaceman on Nov 6^th, 2002, 12:16pm

Thanks, Glenda. Sounds like upping the dosage and switching to a non-timed release variety is the way to go. That's good information to have.

;)

Andy

Title: Re: New to Board -- My Story
Post by NotH20 on Nov 6^th, 2002, 12:57pm

Welcome Spaceman.....sorry the Verap is not working, but maybe all you need to change is the dosage. I have always taken the sustained release, but my next cycle I'm going to try the plain Verap since everyone else seems to get good results with that.....

Good luck to you....
NotH20

Title: Re: New to Board -- My Story
Post by Drk^Angel on Nov 7^th, 2002, 12:35pm

Welcome to the board! Sorry that the beast is mowin' down your cranium with an old push mower with a rusty, dull blade. Good luck!

PFDAN............................ Drk^Angel

Title: Re: New to Board -- My Story
Post by echo on Nov 7^th, 2002, 12:41pm

Welcome to the MB. Sorry to read of yet another person needing to find a site such as this, glad you found us.

Title: Re: New to Board -- My Story
Post by Jabeen on Nov 7^th, 2002, 3:49pm

Hi! I will "echo" echo-welcome aboard. It sems to me that everyday lately there are new people checking in. Some have lurked, some jump right in. I thought I was so isolted when I first was diagnosed. This site makes me know I am not alone. :) :) :)

Title: Re: New to Board -- My Story
Post by Charlie on Nov 8^th, 2002, 5:38am

Glad you found us and welcome to our asylum. Some-how I missed you yesterday. I guess I'm losing it faster than I anticipated. ::) Anyway, somewhere here, you will likely find something that will help you manage this horror in one way or another. There's a little bit of everything here along with lots of silliness. Feel free to join in 8)

Stick around and keep in touch. http://www.headachesupportgroups.com/echat43/putersmilie.gif

Charlie

Title: Re: New to Board -- My Story
Post by spaceman on Nov 8^th, 2002, 6:53am

Thanks, Charlie and all for the warm welcome. I'll be a frequent visitor, although hopefully not out of desperate need.

;)

Andy

Title: Re: New to Board -- My Story
Post by Mark C on Nov 8^th, 2002, 7:20am

Welcome aboard Andy,
I cant add much, just hit all of the links on this site and the OUCH site for as much Cluster info as you can stand. Arm yourself with knowledge so you can get the best treatment possible. Good luck.

..........................and don't Charlie just have the best Smileys! Cool.