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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Help Me!
        
(Message started by: sharbare on Feb 6^th, 2004, 8:41pm)

Title: Help Me!
Post by sharbare on Feb 6^th, 2004, 8:41pm

I can't believe this is actually happening to me. I just finished a cycle that was about 7 weeks long then had 2 weeks of no headaches. I was taking prednisone, and for the first time in my life felt like I skated through an episode.
I thought I was done for the next 20 months or so. WRONG! It came back 10 fold! I have had 32 attacks since Monday night (2 mon, 8 Tues, 10 Wed, 11 Thurs and thank God only 2 today.) I have NEVER had this many so close together!!!!
I haven't been able to sleep cuz every time I do I wake with an attack! I can't tell if I have started another cycle or if this is the same cycle and out to get me. I am exhausted. I have 2 small children that life does not stop for. My husband, mom, sister and friends have been so supportive. I pretty much can't even function. I feel pathetic and anxious not knowing when an attack is coming. I only left the house once since monday and that was to go to the Diamond clinic again. (which I got two attacks while I was there) They put me on cyroheptadine 4 mg twice a day for 3 days, then 4 a day thereafter. Is anyone out there taking this drug? I have only taken two doses but it seems to be helping. Only time will tell.
Sharbare :'( :'(

Title: Re: Help Me!
Post by Rick_K on Feb 6^th, 2004, 8:49pm

So sorry to hear you are having such a tough time with the beast, we are all here for you!

Have never tried cyro...

Do you have any O2? If not get some...it is a wonderful thing.

Wishing you PFDAN

Rick

Title: Re: Help Me!
Post by Mark C on Feb 6^th, 2004, 8:58pm

Bummer....I have learned the beast follows no schedule.
Look here (http://clusterbusters.com/) for the nearest thing to a cure I have found in 27 years.

Good Luck.

Mark

Title: Re: Help Me!
Post by Charlie on Feb 7^th, 2004, 12:05am

Welcome and sorry that you're having to deal with this horror. You'll find some good ideas for dealing with CH and there will be more posts every day. You might try this: (worked for me)

http://www.netsync.net/users/charlies/

Charlie

Title: Re: Help Me!
Post by cootie on Feb 7^th, 2004, 12:20am

Hi Sharbare.......hope things are goin better for ya by now ? Pam that's been behind at sayin HEY to newbie's

Title: Re: Help Me!
Post by Callico_Kid on Feb 7^th, 2004, 12:56am

Sharon,

Sorry you are getting hit so badly! :'( That doesn't quite cut it I know, but that is all I can say other than we are praying for you right now.

I don't remember if you said anything about a preventative the other day. Definitly I would suggest O2 as an abortive, and ask about trying Verapamil and Lithium as a preventative. They are about all that are keeping me sane (right!). Call me if we can help.

Jerry

Title: Re: Help Me!
Post by thomas on Feb 7^th, 2004, 4:55am

wish the beast would just leave you the hell alone....... and everybody else,for that matter............

Title: Re: Help Me!
Post by Jackie on Feb 7^th, 2004, 9:20am

Hi Sharbare...

Sorry you are having such a hard time... :(

Cyproheptadine is an allergy medication (an antihistamine) usually prescribed for the relief of the symptoms of hayfever and the common cold. I know that Diamond is big on the "histamine theory" but I'm not sure about it. My hubby was hooked up to IV's in their clinic for two weeks....didn't work....did cost over $25,000 though... >:( The histamine treatment is thought to be outdated and archaic. However, let me say I hope you get some relief from the cyproheptadine....fingers crossed for you. CH is very individual...what works for one doesn't work for another.

Have they prescribed any prevent drugs like verapamil or lithium? Did they give you a script for 02? Did they give you any abortative drugs.....imitrex, zomig, etc.
Sometimes verapamil, lithium, etc. taken with the prednisone works as the prednisone holds the HA at bay while the other drugs have time to get into the system.

Good luck....keep posting and let us know how you are doing. Someone is here 24/7.

Jacks 8)

Ueli....where the hell are you?? We need some of your wisdom......

Title: Re: Help Me!
Post by River_Rat on Feb 7^th, 2004, 12:07pm

WOW! It hurts me to read this post because I know exactly what your going through. However I will say this, typically when I am in the place where you are now, I'm almost done.

Last year in September, I was in a regular painful cycle 3-4 bad ones a day with a few shadows, then I started taking AMERGE twice a day and the CH stopped I kept taking them and I was pain free for about 2 weeks, Well I ran out of Amerge but that was ok because I thought I was done, one week later I got hammered and thought I was going out of my mind 8-10 bad ones a day for about two weeks then I was completely done Pain free since October.

So Chin up keep the faith maybe this is just the grand finally.

PFDAN

NORM