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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> hi, I'm new here
        
(Message started by: cbear on Apr 20^th, 2005, 8:08pm)

Title: hi, I'm new here
Post by cbear on Apr 20^th, 2005, 8:08pm

I've had episodic CH for about 30 years now. I am a 50yo female who was headache free for six years (!!!!!) and thought maybe menopause had eradicated them. No such luck. Started having h/a about 2 weeks ago, at least 2/day, waking up every night with one. Discovered that the neurologist I had seen last time had retired, got emergency appt. with another dr. in the practice who does not seem to be overly familiar with CH. Last time I was put on Sansert, which either worked or I was at the end of the cycle. This dr. gives me a Rx for Sansert, then I find out it's been discontinued!! So the dr. says we'll try Prednisone and Verapamil, even though I have tried them before with NO effect. I tried to think optimistically...just because it didn't work before doesn't mean it won't work now, blah, blah, blah. But, guess what, it's not working. Over the years I have also tried the following, none of which worked: Lithium, Inderal, Periactin, Indocin, and probably some others that I'm not remembering right now (I have a headache). Imitrex works great for me: the injection, that is; I have tried the nasal spray, which only sometimes works for a mild h/a, and besides, it's nasty.
The problem I have is that I'm getting 2-3 h/a per day, and I worry about doing more than 2 Imitrexes, and also my insurance won't pay for any more for another 2 weeks. I asked the dr. about oxygen, topomax, and ritalin as alternatives to the verapamil and prednisone, but she wanted to try the more "reliable" methods. I'd appreciate any advice, suggestions, etc., both in general and specifically about topomax & ritalin. I'm making my way through all the info here. I'm so glad y'all are out there.

Title: Re: hi, I'm new here
Post by don on Apr 20^th, 2005, 8:11pm

Quote:

says we'll try Prednisone and Verapamil

Sounds like the Doc might know a little something.

What dosage of verapamil?

Title: Re: hi, I'm new here
Post by Redd715 on Apr 20^th, 2005, 9:07pm

I agree with Don. Sounds as though the Doc has at least some working idea about CH. As fr as the trex injections go check out the trex tip button to the left over there...

<<<<<<<<<

Gives you 2 to 3X the aborts as a single stat dose, and if you can get your trex in vials and have syringes you can break them down even easier.

Check the O2 link as well, a God send to many sufferers. There is also some un-official beta testing of of an herbal treatment called Kudzu you'll find that info on the medications thread. And there is also another alternative you can read up at

www.clusterbusters.com

Sorry you had to find us, but glad you are here and can get proactive in your treatment by educating yourself.

Don't be a stranger...

Title: Re: hi, I'm new here
Post by RichardN on Apr 20^th, 2005, 10:41pm

Hi cbear and Welcome

Ditto the above.

And DO check out the 02 info link . . . . works for about 70% of us to abort. I can't take Imitrex (high cholesterol and arterie blockage) and oxygen is my only abortive . . . can kill the beast in minutes if caught early. You will need a script for the proper regulator (15 lpm) and mask (non-rebreather). I go nowhere without it.

Verapamil is my preventative and Melatonin (OTC) has helped many with the night hits, taken before bedtime, 6-9 mg is common . . . don't be surprised if it makes you groggy.

Water/water/water . . . see the water x 3 link on the left.

Much info/caring/sharing here from folks who REALLY know your pain.

Be Safe, PFDANs

Richard

Title: Re: hi, I'm new here
Post by cbear on Apr 22^nd, 2005, 8:06pm

re: dosage of Verapamil - Right now I'm taking 180mg qd. Last time I took 120mg tid with no effect. How long does it usually take to know if Verapamil is going to work?
Thanks for the advice on oxygen, etc. I'm going to ask my doctor - again - for the oxygen.

Title: Re: hi, I'm new here
Post by don on Apr 24^th, 2005, 9:05am

Takes 7-10 days at a theraputic dosage.

I seriously doubt that 180 will be theraputic.

Title: Re: hi, I'm new here
Post by bigred on Apr 24^th, 2005, 10:06am

Hey cbear.
My doc went from 240mg to 720mg verapimil, and I also use imitrex. With the insurance problems Im lucky enough that my doc gives me samples to carry me if I run out before insurance picks up the next presciption.
Anyway you have found a blessing in this sight, There are very caring and informed peaple on this sight.
Stick with us and maybe we can help.
PF days and Nights.
Bigred

Title: Re: hi, I'm new here
Post by LeLimey on Apr 24^th, 2005, 11:31am

Hi cbear, nice to meet you! I've been on 480mg of verap and its not been helping that much. I saw my neuro on Weds and he has said he is prepared for me to go up to 960mg (in staggered increases of course) before he tries anything else. Be aware that an ECG at every increase is considered necessary too
Let us know how you are getting on okay
Regards
Helen

Title: Re: hi, I'm new here)
Post by dagger on Apr 25^th, 2005, 7:49pm

Hi cbear,

I can so relate to your hope that menopause had taken care of the "demon". I had gone over five years without an episode and thought I had outgrown it, too. But last October I was cursed with the longest (3 month) cycle ever. I started them at age 15, so have had lots of experience. I hope you tried oxygen. It really helps. I did Verapamil many years ago without much success but probably didn't get a high enough dosage. Hope you have been helped. dagger