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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Another lurker joins in!
        
(Message started by: skyote on Jul 21^st, 2005, 10:06pm)

Title: Another lurker joins in!
Post by skyote on Jul 21^st, 2005, 10:06pm

First of all, I have to thank all of the regulars on this site for all the work they have put in to sharing information and helping those who need help and support!

I've been to this wonderful site several times over the past few years to get the latest on treatments, etc. I've had the beast with me for 25 years or so. When I was younger (20's & 30's) I would get 3-4 cycles a year, each lasting 4-6 weeks. The pain level (as I know it now) was around 6-7 and the HA's would last 15-30 minutes. Now that I'm in my latter 40's, I am getting 2-3 years between hits, but they are much more severe, and last about 3 hours. I started my current cycle at the end of June. They started with 5-6 Kips after taking an afternoon nap after work. A week later, they started hitting me an hour or two after going to bed at night. After spending two tortuous nights with very little sleep, I read about the Kudzu and Melatonin and ran out and bought both. I went a couple of days without a HA, then they came back again. I could only get in to see my Dr.'s P.A., but she turned out to be very knowledgeable about cluster headaches and got me started on the Prednisone and Imitrex injections. I can't really say the Prenisone helped, but WOW! the Imitrex is amazing! I would wake up with a headache coming on. That usually means I will be going to a Kip 8-9 within 10 minutes, and then groaning and pacing for 3 hrs. But after my first self inject of Imitrex, the pulsing subsided within 3 minutes, and the HA was GONE in 5 minutes.

But now I find out through my insurance company's website that they will only pay for 4 refills per month. I am on my 3rd refill in 10 days! I sure hope the headaches take a hike real soon, because that can get expensive at $70 per night just to get a few zzzzzs.

I suppose if they continue, I should get my doctor to prescribe sone O2. I have never tried it before and would rather not have to keep it around for years waiting for my next cycle.

In the meantime, I've decided to use the Trex Tip to ration out my Trex doses. I also encourage new Trex users to go to the Imitrex website, fill out their short questionairre, and in 2-3 days you will receive 4 coupon checks for $10 each to help with your prescription or copay. I hope they keep on sending them! Gawd, I see there are people even selling them on ebay now.

Anyway, thanks to all of you who come here. The information you will find here is the best there is. I've been to neurologists who tried to teach me hypnotherapy and biofeedback and to family doctors who loaded me up with narcotics, all to no avail. But when we all come together collectively like this to share our experiences, it opens a whole new avenue to pursue this thing we call 'the beast', and someday we will whoop his ass!

Title: Re: Another lurker joins in!
Post by E-Double on Jul 21^st, 2005, 10:25pm

Great to meetcha, welcome to the nut house and good for you for having such a kick ass attitutde!!!

Share all you can and live ;)

Title: Re: Another lurker joins in!
Post by thebbz on Jul 21^st, 2005, 10:40pm

Welcome
Sounds familiar. You hang on to the trex shots till the prednisone kicks in. In two days your heart rate will be around 100 resting. Have you done the prednisone taper before? It has worked many times for me although there are so many side effects. Hopefully the prednisone taper will bust up the episode. This too will pass. All the best
BB

Title: Re: Another lurker joins in!
Post by skyote on Jul 21^st, 2005, 10:51pm

Nice to meet you guys too!

This is the FIRST time I've tried Prednisone. I am on day 11 of them. I started with 80mg for 3 days, then 60mg for a week and tomorrow I go to 40mg for a week, then 20mg for a week. The first few days, I was wired like a Starbuck's frappacino addict. What should I expect from the prednisone?

Randy

Title: Re: Another lurker joins in!
Post by thebbz on Jul 21^st, 2005, 10:56pm

You will taper down and body fuctions will slow down as the prednisone is removed. Hopefully when this happens you are beginning to be affected by your prevent that should have been perscribed. Did you get a scrip for a prevent?, verap, depakote, keppra, there a many being used.
BB

Title: Re: Another lurker joins in!
Post by thebbz on Jul 21^st, 2005, 11:02pm

Randy,
The PA got you off to a good start did that include a referral to a neurologist? Read and read more . Check out clusterbusters.com. There are better things that work out there for some that aren't as harmful as prednisone.
BB

Title: Re: Another lurker joins in!
Post by skyote on Jul 21^st, 2005, 11:04pm

She only prescribed the prednisone. I mentioned Verapamil to her and she acknowledged it as a possibility, but didn't prescribe it. If this cycle is short, albeit vicious, maybe it will end before the Prednisone wears off. But then, we never know HOW long they will last, do we? Do you take the verapamil as a maintenance dose over long periods?

Randy

Title: Re: Another lurker joins in!
Post by thebbz on Jul 21^st, 2005, 11:21pm

Yes, hope and hope again that the pred broke the episode. I havn't to date found a prevent that works for me. I get one to two episodes a year like clockwork. For years I was guinea pigged with all the dope known to man. Too many side effects through the years. I am currently trying an altenative therapy with success to this point. Clusterbusters.com, first year without winter episode in over 15 years. ;;D ;;D ;;D. So far so good I almost can't believe it. I wish all here pain free days and I'm trying to make all I have count,as we just never know about the demon bastard.
BB