also wife of chronic ch sufferer

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Posted by Lona ( on October 03, 2000 at 18:54:34:

In Reply to: wife of chronic ch sufferer posted by Elizabeth on October 03, 2000 at 14:24:47:

I could have written your message. Larry is also chronic and has been for as long as I can remember. He had his first cluster in 1969 at 19, he's 50 now and we have learned to live with "the uninvited guest" as we call it. In the 80's Larry was so bad he slept sitting up for 3 years and had a minimum of 5 per day. The most he ate was a bowl of tomato soup per day. He never missed work. In all these years he has only taken 2 days off work. I don't know how he keeps going. I only know that he feels if he gives in to the cluster he will lose the battle. At that point his Neurosurgen did the procedure "radiofrequency Trigeminal Rhizotomy" It is definetly worth checking into. It helped a great deal and while he is still chronic there are days inbetween the monstor attacks so we are eternally grateful for that time. O2 is definetly a benefit. If breathed at the very earliest moment of an attack it can abort the attack or diminish the pain level or length of the attack. As for the meds there are so many out there you need to keep trying until something seems to help more than what he was using previously. My heart goes out to you both. We certainly know the strain the clusters have on your quality of life. One thing that happens is that your relationship becomes cemented. Our life is each other. When you're chronic there are too many things that can trigger clusters they rule your life and you tend to avoid anything that might set one off. I am just grateful that we have time together. After the procedure "RTR" the fear become less, the oxygen also helps lessen the fear. But you have to consider the cluster first before anything you might do. If you would like to contact me please do. This site has been a tremendous help to us and I hope you will find help and comfort from knowing you are not alone.

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