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Everything posted by Mattrf

  1. From my own experience and from what I have learned from the others that have SUNCT is that it is a little different for each of us and being there are so few of us the doctors do not even know what is normal. The only sure thing seems to be that it comes in cycles just like Clusters, it effects one side of the face around the eye just like clusters. I think the main difference is that SUNCT is not as intense but happens far more often, mine are 24 hours a day getting no break when it is happening it just changes in intensity from annoying to making me legs go limp at times but nothing like what I have seen of a cluster attack. My first cycle lasted about a year then a year off, my second lasted two years then again about a year off the third lasted four years then once again a little over a year off then started again about a month ago but so far the Olanzapine is keeping it at bay, so far. I also have a numbness on the left side of my face even half my tong is a little numb like when the Novocain from the dentist is just about worn off. But one of the people I know has a cycle that started nine years ago and has never gone into remission and his pain sounds more intense than what I have dealt with myself so again we are all a bit different it seems. The pain tens to feel like something trying to push the eye out from behind or like a red hot needle being pushed into the eye but most of the time just a dull aching that drives me nuts not real painful but relentless, I go to sleep with it and wake with it but I can sleep and only sometimes get jolted from sleep from pain but it does happen just not too often thank God. Matt
  2. I also have SUNCT and have been dealing with it off and on for 10 years now mostly on since I seem to get a year off between cycles and the last one lasted 4 years and this one just started. I also have tried just about everything including electroshock, not fun and did not help but boy it hurt. I know about six others that also have SUNCT and only one found a treatment that works for her but she stays in the hospital for a week on a Lidocain drip about once a month not something I could do and since I tried Lidocain and it only gave me relief while the IV was in my arm don’t think it would help me. I have found something that helps me and if you have not been on Olanzapine it is worth a shot. When I first went on it I had a week of 0 pain and it was a god send since I was literally at the end of my rope. But the drawback is the withdrawals if you stay on it to long are horrible worse than getting off pain meds by far. I have found that when my headaches start creaping in I can take the medication for 4 – 7 days then stop and so do the headaches but the medication will make you feel like a zombie and I have to warn the two of you here that also have this that the others I know have tried it and it did not work for them as it does for me, seems we all react differently to meds with SUNCT but it is worth a shot if you have not taken it yet and I pray it works for you. If either of you want to talk would be glad to add two more to my SUNCT contacts and can pass on the others I know to you, since there are so few of us with SUNCT we should stick together. You can contact me at Mattrf at Yahoo writing it funny incase the website strips out email addresses, hope to hear form you both. Matt
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