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        New Message Board Archives >> Jul-Sep 2003 >> frustration runs rampant!!!
        
(Message started by: mikki717 on Sep 29^th, 2003, 8:56pm)

Title: frustration runs rampant!!!
Post by mikki717 on Sep 29^th, 2003, 8:56pm

OK...
Quick intro!
My Hubby has been having Clusters for... God 19 years. Luckily his cycle is now at every three years for 8 weeks. (Yeah... as if lucky is the right word!!) Last cycle, summer 2001, he was stricken for 16 weeks, because an uninformed Dr. had him taking Amerge twicw daily... and it is ADDICTIVE!! Every time he tried to stop taking it he had a major rebound, including seizure activity.

Needless to say, this coming summer, 2004, he is "due" for another cycle, and he is freaking out. (Who can blame him?" He is already feeling the shadows...

OK... questions

Botox... any good ideas? I did research, and in theory it SHOULD work.
...Mineal nerve... paralysing it for 6 months... I read the posts and I'm not having any warm fuzzies.

Neck Twinges... Is anyone experiencing a "feeling of a ""rubber band snapping "" in the neck and partial paralysis of the facial muscles" several months before their cycles? ... Kind of like a prelude?

I read the intoduction to the site, and I can definately feel for the authors. I see my husband pulling his hair, crying, screaming, puking his guts out, and trying to find the guns I have hidden from him at the first sign of a new cluster cycle. I know it is coming, I can count the months... I search the internet for new ideas... (He HATES taking medication... he feels that the doctors are treating him like a guinea pig, or a drug addict looking for a fix.) Even meds that have helped in the past are taboo because they are DRUGS. Whenever I find a new idea he almost gets angry because it is drugs.
I would do anything for BOTOX to be the answer for him.

AAAAAGH!!!

I am a well educated woman, and I nor any doctors, (more educated than myself!!) can find any answers!!!

Title: Re: frustration runs rampant!!!
Post by Ree on Sep 29^th, 2003, 9:09pm

Hi Mik and welcome... your husband is right in some of his thinking... They actually do use them as Guinea Pigs sometimes because what works for one person will not work for another... My husband Daves Neuro told us that once... she would have Dave try one treatment and her other CH sufferer patients try another... The poor guy is gonna wish them upon himself... I can understand why he is freaking out thoug We are hoping Daves cycle is over for the next 3 years. So welcome and good luck.......I stick around and support here so feel free to email us if you need to Ree16angel@aol.com... lots of information so put your feet up and relax.............. ree

Title: Re: frustration runs rampant!!!
Post by kissmyglass on Sep 29^th, 2003, 9:24pm

Every 3 years for 8 weeks? ??? ??? Sheesh... :-X

May his cycle never come...If it does...get oxygen & Imitrex...works for many Clusterheads.

Kev

Title: Re: frustration runs rampant!!!
Post by Charlie on Sep 29^th, 2003, 10:26pm

Welcome but as hard as it may seem, try not to count on getting hit. It's useless anyway. I know little about what you talk about but:

Here is a link to a technique learned from a neurologist that works well for me and others.

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

Charlie

Title: Re: frustration runs rampant!!!
Post by cootie on Sep 29^th, 2003, 10:34pm

Hi mikki717.......wow......dunno what ta say bout the meds part.......guess it's all how ya look at it but relief is relief........hate to see him go thru all this if sumthin could work for him but sounds like he is set in his ways about it. Good luck to you ! Pam that thinks pain is worth medicateing

Title: Re: frustration runs rampant!!!
Post by Pinkfloyd on Sep 29^th, 2003, 11:12pm

mikki,
maybe he'd be interested in trying two cups of tea, every three years....he(and you) has time to do some research.....
Please don't discard the idea until you've done some reading...and asking around...

www.clusterbusters.com

PF

Title: Re: frustration runs rampant!!!
Post by TxBasslady on Sep 29^th, 2003, 11:37pm

I have to agree with Pam on this one.....relief is relief no matter how it comes.

I am not a big fan of taking medication either..however, when in the midst of a CH.....I would do ANYTHING to stop the pain. I have not suffered near as long with CH as alot of the folks here. And to be honest, I am not sure I could have handled it as well as some of them do. It is a life altering condition. It disrupts the entire household when one is in a cycle. Unfortunately, we do become guinea pigs, because not everything works for all. That is unfortunate.

This web site and the OUCH organization has a goal...and that is to educate the medical community in order to get proper treatment and the recognition that this condition so much deserves. We all need a break in the totally ridiculous cost of these meds needed to get the relief that we need so desperately. The insurance companies need a swift kick in the ass. They seem to see fit to approve the Rx's one time, then turn around and put limitations on it the next. And while all this perverbial bs is going on, we are ultimately the one that suffers from their stupidity.

At this particular time, I am pf, due to a Prednisone taper. But I have lots of people here on this site that I love and care about, and while I may be pf, they are suffering. And to be perfectly honest, that kinda pisses me off. I would take the pain from them if I could. Some of these people get no relief...and no pf days or nites.

Ummm...not a clue why I got off on that speech. Kinda jumped in there with both feet. ???

I sincerely wish the best for your hubby....hope he can get the right combo together to take care of the prob.

In the meanwhile.......sending lotz of pf vibes his way.

Jean

Title: Re: frustration runs rampant!!!
Post by Callico_Kid on Sep 29^th, 2003, 11:38pm

Welcome aboard. Pull up a chair and gethim to join in too. There is a lot of info available here as well as a lot of support. If he is dead set against meds, and I understand, specially since he had such fun with Amerge, at least look into O2. A lot of us have relief with that. There are a number of us that handle CH med free for a variety of reasons and you can learn from them some of their techniques. Hope this helps.

jc

Title: Re: frustration runs rampant!!!
Post by Turts on Sep 30^th, 2003, 6:37am

Just entirely as a novice, however my understanding is that botox works as muscle relaxant for tensions and stress related headaches.

I dont belief that it would work for vascular headaches.
But as I said this is a novice with no research involved.

Guess I am really writing this to provoke discussion on the matter.

Anyway, wishing you and your husband all the best for the future. wishing u many PFD's.

AS for being a guinea pig, things could be worse, he could get treated like a gerbil!?!?