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        Cluster Headache Help and Support >> Cluster Headache Specific >> New here, clusters since July 4th 2001
        
(Message started by: clusterdeb on May 14^th, 2006, 9:53am)

Title: New here, clusters since July 4th 2001
Post by clusterdeb on May 14^th, 2006, 9:53am

Hey, I really am glad to have found someone to talk to, I am at the end of the road on preventatives, as far as prescription drugs. I can't live without imitrex though, too bad you can't go to a imitrex house (crack house) and buy, you know 20 bucks a pop. Or make it out of sudafed.
I really admire you guys who have had this for more than 10 years. My life is so effected by this, but I try to hide my pain. When I have a attack I'm so ashamed and embarrassed, I keep trying to fiqure out what I am doing wrong, why me? Has anyone out there felt this way?? Iam I going crazy?
When I'm alone and have one I can't believe how I act and sound, but to moan and groan and cry and pull my hairout seems to help. When the family is here I have to be quiet and try to act like its just a headache because I dont want them to be scared or to worry.
I'm sorry for making this so long, I'm lucky to have found this site. thanks for listening. CD

Title: Re: New here, clusters since July 4th 2001
Post by pattik on May 14^th, 2006, 10:24am

Deb, It could take some pressure off of yourself if you start to inform your family and friends about CH. The OUCH website (link on left) has a lot of information for you and your family which could be very helpful. Here is one of many links which you could refer family members to, or at least think about printing it out. Part of dealing with the pain of CH is letting go of the guilt or shame of how you think others might see you. Pain-free wishes to you. Pat

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Title: Re: New here, clusters since July 4th 2001
Post by clusterdeb on May 14^th, 2006, 11:21am

pattik, I just read the letter and I am so emotional oh my god , he's wrote that about me. Someone knows really knows what im feeling!!!
Can you help me I'm not real good on the computer, and I don't have a printer at home. I tried to e-mail that letter to myself and it didnt go through. Will you e-mail it to me and when I get to work I will print it off. I work at a hospital and plan to put it in everyone of the doctors mail boxes.
Or tell me how to e-mail it to myself??
thank for responding Deb

Title: Re: New here, clusters since July 4th 2001
Post by mrnice on May 14^th, 2006, 11:25am

deb..i'm sensi from over at ache and asked you questions and followed your threads there too...
First off i'm so sorry that you have to hide your pain.. that can only make it worse when it comes to dealing with it...In terms of being ashamed.. after my bad attacks i'm always withdrawn...if my girlfriend was unlucky enough to be around during one she was sure to get cussed out for absoutely everything and anything...my poor dog stays the hell away because i'm constantly screaming and slamming my fists on my head and my head on the walls... slam my head with ice packs.. it all feels dandy just for a few seconds and at least it gives you something to do because sitting with the pain is not an option. I dont know what it would be like to have children and suffer from these clusters...having someone dependent on you is not fun if you have headaches everyday... i think that hiding it from you family has to take a lot of unnecesary energy from you...they should know that its not just headaches like you see commreicals for and people take advil and then are dancing...these are headaches that bring some people to end their lives before living another second with the pain...
Its not your fault you get this pain...since getting this pain everyday its changed my outlook on how I view "regular" people... Its a dream to just be normal for me and I just now view most people as really not knowing how lucky they are. This pain your going through if nothing else will harden you into one of the strongest women you know and your kids and husband will always be able to benefit from having someone with your insight and strength around. I can only imagine what it must be like for you after trying all these preventatives with all their side effects to no avail... i'm already burned out with dealing with clusters and I havent even crossed one preventative off the list.

Title: Re: New here, clusters since July 4th 2001
Post by pattik on May 14^th, 2006, 11:32am

Deb, check your private messages.
Pat

Title: Re: New here, clusters since July 4th 2001
Post by clusterdeb on May 14^th, 2006, 11:34am

mrnice,
My poor dog was here with me yesterday during an attack, she's a taco bell dog, I scared the s.. out of her.
I just had another one at 10am ,thank god Iam alone today. Thanks for the kind words, let me know what the dr. tells you. cdeb

Title: Re: New here, clusters since July 4th 2001
Post by mrnice on May 14^th, 2006, 12:51pm

on 05/14/06 at 10:24:42, pattik wrote:

Thanks, I also found that letter helpful.. The doctor mentioned was Goadsby from the University College in London... is this london ontario or london england.. because I have an appointment that i've been waiting almost a year for at the london headache clinic and if this doctor who is one of the top dogs in the cluster field is going to be there to help me.. well thats a jolt of hope into my bloodstream!

Title: Re: New here, clusters since July 4th 2001
Post by seasonalboomer on May 15^th, 2006, 12:03pm

Deb,

Sorry that you have a reason to be here. There is hope.

I also think Imitrex is a lovely invention. But, luckily I get relief from O2 most of the time before I have to go to the trex. Have you tried O2?

Secondly Deb. There's no shame in Cluster Headache. It is what it is. Time spent educating your family and friends about it can offer you a great reward from your feelings of isolation due to CH. While I would still never invite everyone over for a Cluster Headache show, it is a lot easier to explain why I need some time alone and expalin that when i'm in cycle I might bow out of a few social interactions.

Many of my friends now know that when I say there's no way I can join them for a few beers for a few weeks they actually say, "They're back, eh?" With compassion and understanding.

Then, when you accomplish that you can focus on what is important. That is building up an arsenal of options for your Clusters when they do come. That might include rest, getting your O2 tank and mask, stocking up on Imitrex when out of cycle as Insurance will allow. My arsenal also includes a couple of 4-packs of Red Bull. Ther is hope. These can be managed some. and you can have a life, even when in cycle.

Scott

Title: Re: New here, clusters since July 4th 2001
Post by clusterdeb on May 20^th, 2006, 7:47am

Ive tried the bull cleaned the carpet all day. [smiley=laugh.gif]
When Ithink a ch is coming I start with coffee. My dr wants me to try Zomig for a preventative now, but I dont know if I can give up Imitrex because I know it will abort. Have not tried O2 at the liters yall suggest but Im working on getting some. I believe it was 15 liters with full non-breather mask? If it works that cheaper than imitrex.

Title: Re: New here, clusters since July 4th 2001
Post by E-Double on May 20^th, 2006, 7:58am

zomig as a preventative?

Title: Re: New here, clusters since July 4th 2001
Post by clusterdeb on May 20^th, 2006, 8:05am

That's exactly what I thought I'm I crazy but I thought that was used as an abortive?????

Title: Re: New here, clusters since July 4th 2001
Post by vig on May 20^th, 2006, 9:23am

zomig might be a better abortive than Imitrex.
at least it lasts 12-24 hours instead of 2 hours.

Title: Re: New here, clusters since July 4th 2001
Post by clusterdeb on May 20^th, 2006, 9:37am

well I havent gotten the zomig filled. Of course my insurance denied, and the doc has to call them and write a letter. So im still waiting to try.