Posted by John B (204.17.44.189) on September 01, 2000 at 19:35:50:
In Reply to: Wife of a CH sufferer posted by Naomi on September 01, 2000 at 15:38:46:
Hi, Naomi,
I read your post with great interest and understanding, as I have had chronic cluster headaches myself for over 11 years. I have lost several jobs because employers and coworkers were absolutely freaked out by seeing me have attacks, and were convinced that my condition was brought on by "lifestyle choices" that I could change if I only wanted to. My wife has had to put up with radical changes in lifestyle, uprooting of our home, terrible moods, the effects of some drugs that have caused me to have short-term memory loss that was very severe, not to mention many other side-effects that we have had to endure.
Anyone that supports a CH'er has to witness pain attacks that are very traumatic, both for the person experiencing them and for all around who love and care for the sufferer. There have been so many long nights of pacing with the beast raging in my head, my wife racing back and forth with scalding hot towels, or just sitting in another room not knowing what to do and trying to put the fact that I am in the other room and in agony out of her mind somehow.
Through it all, however, there are some things to remember. As bad as cluster headaches are, there are worse things in life that we should be glad we do not have. Also, we should make sure we have done all we can do to find the very best treatment available for these awful things.
This website is a wonderful thing in that it lets us know that we are not alone; that there are many, many others that know and understand the hell we go through, both as sufferers and as the families who watch and try to support and help those of us who suffer. There is a tremendous amount of information available here about medications that work, and coping methods that work. And, there are friends galore here that will talk with you and help you when you feel you can't go on another day.
The most important advice I have seen posted here is to make sure your husband is seeing a qualified neurologist; hopefully one that is familiar with cluster headaches. There is medical information on this site under the radio button marked "Medical Information". If necessary, print it out and take it to your doctor with you so you can discuss it with him or her.
Oxygen inhalation at the first sign of a CH attack seems to be the #1 best way to abort an attack, if done properly. This requires the use of a special, non-rebreathing mask and a regulator capable of delivering at least 10 liters per minute of oxygen. This is much easier on the body than the Imitrex injections.
Preventative medications such as Verapamil, Topamax, and others are also a very important part of treatment for chronic sufferers. Is your husband taking verapamil? At the very least, this inexpensive drug seems to be a first line of defense against the demon.
Feel free to e-mail me directly, or have your husband e-mail me directly if you want to vent more or discuss more about chronic CH. I know what a drag it can be. I also know it is something you can learn to live with.
LYG
JB