Hi there Nisha...

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Posted by Mike B ( on August 10, 2001 at 00:43:33:

In Reply to: Desperate Wife of Blurred Vision,Cluster-Sufferer posted by Nisha on August 09, 2001 at 15:00:13:

Hmmm. Sorry that your husband, you and your family are suffering. I have CH's and I have definitely hidden from everyone in the house and hollered and stuff into towels and pillows and things. It is very emberassing to me to be unable to control the side-effects of the CH's and not be able to hide my reaction to the pain. Also, speaking from my point of view anyway, it is very very hard to let those who love you and depend on you to see oneself in such a state. It may seem to be madness but, if he does those kinds of things and gets through then he is doing pretty damn good. I do not think one can actually believe the serious nature of the pain unless one experiences it. I have broken bones and done numerous other stupid things which hurt. But that's nothing. I too have thought of suicide many times. You just kind of get worn out from the constant battle against pain and lack of sleep and all the rest. Feels really bad to be there. It is a very difficult place to explain. I think everyone who has serious CH's has been there and thought about that. I actually think it is an almost natural reaction to hurting so damn bad and all. However, I do not think it is the answer. Living can be damn fun sometimes. Anyway, please do not think less of him in anyway because of all this. That may be why he hides from you all. Or he just does not want his children to see him like that. I don't know.

I too have always been very stubborn about going to the doctor. Bad experiences tended to make me feel as if it is a waste of time. My X-wife was always getting very angry with me because of this issue. But, it is very hard to muster up the energy and courage to go and ask for help when, everytime you do, you are not taken seriously or not helped. And, on top of humiliation and suffering and energy, it costs you a lot of loot for nothing most of the time. I reckon I don't like doctors much. Too unprofessional for my tastes usually.

However, there have been lots of advances in treating this CH thing. And there are actually a few good doctors out there. You husband needs to get in there and see a good neurologist and try to work out an effective treatment plan. Perhaps if he keeps looking, he will find something that helps.

I chose to try the shroom treatment, mostly because I had/have no meds/insurance. However, it did help quite a bit. And from reading this board, it sounds like it helps more than most things for others. Without nasty side-effects. Anyway, if all else fails. It sure beats beating your head against a wall...

Anyway, I am tired and just my thoughts on yer post. I guess some of the things you said just kind of struck a chord or something. Sorry about the length of this response... Wish I had something more helpful to say. Others have given some good advice I think, about setting an appointment. If he gets mad, well, at least you were trying to help. He can always cancel it.

Praying for you guys and hoping that your husband will get some relief soon. You all hang in there! And from one CH'er to another, I hope he gets better! He will. Just got to hang on.

Love, Michael B

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