Posted by katrina (63.237.141.210) on October 06, 2001 at 09:33:08:
Hi all, things have gone to hell in a hand basket for my husband. I believe I had posted that he had been diagnosed with trigeminal neuralgia after full mouth extraction of teeth in addition to his clusters. He was prescribed tegretol for that, and within two weeks was near death due to a alergic reaction from it. He spent 11 days in intensive care teetering on life/death. during this time his temperature exceeded 105 almost every day. I stayed the entire time with him and sponged him with ice water around the clock (I wonder if I had not stayed, would he have died?) to just try and keep it below 104. During the high temperatures, the lining of the nerves in his brain stem were "melted" and it has left him wheelchair bound due to lack of coordination, and his speech is also affected. The one thing we hoped was that the lack of cluster or trigeminal pain during this time would continue. WRONG, they have returned and now there is so many medications he is unable to take due to having had renal and liver failure from the tegretol reaction. I had ordered spores prior to hospitalization, and they came while in hospital. I got them going even though he was PF, but I am not sure they are ok. But my question is this, does anyone know if there is any increased risk with him using them in the condition he is in? The clusters are back full bore, and he is not taking any medication for them other than stadol and oxygen. This does not keep them away at all, daily problem. This is frustrating for both him and I so any suggestions would be apreciated. Thanks ahead for any input.