Posted by Cassandra on September 06, 1998 at 13:16:33:
In Reply to: Sufferer of Sufferee posted by Sharon Brunk on September 05, 1998 at 23:43:09:
Hello, Sharon!
My mother suffers from CH and I can relate to some of your pain. Since she has started with this latest episode, it's as if she has become a different person. She is a weary, disheartened individual who lives from painful headache to headache. It is hard to watch, but I love her and try to be there for her when she will allow me.
I don't live with my mother as I have my own young family to raise. My children can't understand why they can't visit grandma when we were seeing her at least 4 times a week just before she got this last episode. I work closely with my mother at my job, and it gets just as frustrating there because she won't let anybody get close. As hard as she tries to keep the headaches at bay, she manages to also push her loved ones away. It's hard to not try to help.
I found this site when I got desperate because I thought my mom was at the point that she would hurt herself. The outpouring of concern and support from so many wonderful people was great enough that for a time my mom was sure she would finally get help from her doctor, being armed with all the info I downloaded. He acted as if he had never known she had these headaches, had never been treated in the past for them, and generally crushed any hope she might have had in finding some kind of relief from the pain. She is unwilling to go throught the whole process of explaining what the doctors should already know, so she has, at this point, given up. She will not seek another doctor's help. It's a setback, but she is coping right now. We all are.
The headaches are hard enough on family and friends when observed - terrifying at times, but the by-products of cluster headaches - depression, frustration, panic, and anger - make us unwilling bystanders. (By "unwilling" I mean that we have a hard time not asking for the thousandth time "is there anything I can do? what can I get for you? etc..." even when we know that they just want to be left alone to deal with this demon themselves. Sometimes we have to respect their wishes and let them cope.)
Most people posting to this site say that lack of sleep (these headaches seem to strike hardest at night, from what I've learned) makes it very difficult to keep to a normal routine. I got my mom a bottle of Melatonin because I read somewhere that it helps to establish a more regular sleep pattern if taken @ 20 minutes before the normal bedtime at night. There are no nasty side affects, that I know of, anyway. She still gets the headaches at night, but she feels that she has gotten at least a bit of natural sleep and isn't quite as depressed during the day (just a suggestion for you to try to get your husband up a bit more during the day.)
I don't really have an answer for your problem, though I sincerely wish there was something I could do. Does your husband have a neurologist that he sees? Is he taking any medications that seem to be taking a bit of the edge off? There are many helpful suggestions if you have the time to read through some of these messages posted.
Hang in there... there are lots of great people here who will support you - and your husband if he chooses to read some of these postings. Don't let your husband frighten you and your children away... he is probably scared, too. All my best to you and your young family...
God Bless,
Cassandra