Posted by Thys on September 06, 1998 at 20:08:12:
In Reply to: Sufferer of Sufferee posted by Sharon Brunk on September 05, 1998 at 23:43:09:
Sharon,
Hi. I've endured episodic CH for 28 years now, and have some experience which may be useful in understanding what your husband seems to be going through.
What you describe appears to be an emotional reaction to the CH, but don't totally discount other possible causes. The emotional impact CH can have on the sufferer must not be underestimated.
There is plain unadulterated FEAR, of the next headache, and all the others you KNOW will follow. Fear of your own ability to suffer the incredible pain, and come through it sane and with a modicum of dignity and self-respect. I remember how once during a particularly long, massively painful headache, I cried. I cried because of the pain, but more out of sheer desperation; there was nothing in the world that could stop the agony, a feeling of having lost the will to live, of having lost my entire future and all that I loved and cherished. During such agony, one can lose all rationality. My wife was right there, although I normally prefer to have my CH in private. Although she was understanding and supportive, her presence made it so much more difficult for me to process these emotions afterwards. You will find references in these pages to some sufferers' desire to be left alone during an attack. For me, it is partly necessary to concentrate on coping with the pain, but also to allow me to behave in whatever way I need to get through any given moment without being concerned about other people and their perceptions. Something as simple as a child staring at you at a time like this causes the sufferer additional discomfort. Oddly, having read some of the postings on this site, it seems sufferers are sometimes ashamed of their pain. I know I've been. I think the reason is that it is simply not possible to describe how much it hurts. There is no objective measure of pain. Secretly, one wonders whether you're not just being a whimp. CH sufferers are few and far between, so you cannot even compare notes. Doctors are often ignorant regarding the straightforward medical facts, let alone the emotional and psychological ramifications. It is only on discovering this site that I've begun to get a wider perspective on what used to be my own, private hell.
The individual's background, conditioning and self-image probably has a great effect on how he deals with the emotions of CH. To me, it used to be inconceivable that I would be reduced to a whimpering, sniffling, shaking and perspiring, pathetic heap on the floor FROM A MERE HEADACHE. I went into avoidance, hiding my condition, even from my family. Sleeping all hours is perhaps a form of avoidance?
To aggravate all this, medications sometimes play havoc with your emotional stability.
Another possible emotional response is: I'm going through this major physical crisis, I'm entitled to avoid/neglect everything and everybody because I'm suffering so much... I personally have less sympathy with this view.
Bear in mind that the situation may be as simple as the medication causing lack of energy or excessive sleepiness combined with loss of sleep due to the CH's.
Does he experience strong 'shadows' - lingering after-effects of CH? When I have a bad shadow (often), I can find little to interest me or cheer me up, and 'listless' is a serious understatement.
Make sure he is receiving proper medical attention, remembering that simply seeing a doctor is not good enough; he needs a CH savvy doctor, preferably a neurologist. Does he use Imitrex/Imigran? Now that this is available, frequent head banging is not all that common unless you cannot use it for whatever reason (or is it, other sufferers?). Is your husband hiding his CH's from the military, or playing it down? Does he think he's going to lose his job?
Sharon, in my humble opinion, making demands on him will not improve the situation. You may be able to get an insight into the reasons for his behaviour by talking to him, if he is prepared to delve into these things. Don't let him get away with murder, but understand he may be having to deal with more than just pain, OK, SERIOUS PAIN.
And you have my sympathy, having to cope with the kids at the same time.