Posted by Margi (161.184.81.207) on January 02, 2001 at 11:42:58:
In Reply to: years???!!! no way!! posted by jacque on January 02, 2001 at 11:11:32:
So sorry to hear about Daniel. My husband has been a sufferer for a long time (he's 43 now and I think he started getting cluster cycles in his early 20's). I have watched him go through this for 15 years now. At first, it was every 6 months that a cycle would hit him and last for about 2-3 months, so we were getting about a 3-4 month break, then it would start again. When he was mid-thirties, it would be once a year for about 3 months. Now, he seems to be going about 18 months between cycles and, with the different treatments we're trying for him, I'm wondering if we are lengthening his remissions in the process or if he is just one of the lucky ones who will outgrow clusters with age.
Jacque - it's HELL to watched a loved one go through this and I can't imagine how hard it is to watch your child suffer like this. I hate to welcome you to our "elite" group, but please know that you are not alone. People DO understand what both the sufferer and the supporter go through her.
Please feel free to email me anytime, just by pressing my name in blue at the top of this post if you ever need to talk.
You will become Daniel's best weapon in fighting clusters. Educate yourself, read everything you can. Print out stuff from this website, go into the medications button on the left. Read about oxygen therapy. I hate to see a kid start on all the chemical meds but some folks have found relief and "control" going that route. Check out the natural therapies (water, ice). Read about shrooms (the dose is 1/4 of what the full 'recreational' dose is but no doctor will ever recommend this for Daniel). The shrooms have had a very high success rate in this group. Learn all you can and sharpen your teeth. Daniel needs you to help him fight this battle.
Hang in there.
WWW
Margi