Post by Ricochet on Jan 19, 2004 0:06:45 GMT -5
Hello, I'm Karen and Lisa has been nice enough to honor me with Moderator status.
I wanted to introduce myself. I have been suffering from Stapedial Myoclonus for about 7 years. About 6 and 1/2 of them not knowing what was wrong with me and the doctors could not figure it out. Thanks to Lisa and the Tinnitus Support Message Board I started reading about stapedial muscle spasms. The more I read the more I was convinced this was my problem. FINALLY! A name for my ailment. That was the biggest relief, just knowing what it was. I had one ENT that was close in his diagnosis but for some reason he started talking about Anti-Seizure meds and it scared me so I left him. (silly me)
I then decided to see a Neurologist armed with all of Lisa's info and other information on the TSMB and he agreed that was probably what I had. He immediately started me on Clonazepam and it didn't help that much. He then added another anti seizure med called Trileptal and that has helped me greatly. I haven't had a pop or a click in several weeks.
I still live with the fear that it will start happening again and avoid noisy invironments because I believe that's what causes my stapedial muscle to go into seizures. Another of my ENT's thinks I have hyperacusis also. I am not totally convinced but at times I am very sound sensitive.
From what I hear this is a very rare problem so there is not a lot of information out there and the doctors are not very familiar with it. It's up to you to help in your treatment and getting across that this is not just tinnitus, it is a debilitating but very real problem.
Please feel free to ask ANY questions.
Your newest moderator,
Karen
I wanted to introduce myself. I have been suffering from Stapedial Myoclonus for about 7 years. About 6 and 1/2 of them not knowing what was wrong with me and the doctors could not figure it out. Thanks to Lisa and the Tinnitus Support Message Board I started reading about stapedial muscle spasms. The more I read the more I was convinced this was my problem. FINALLY! A name for my ailment. That was the biggest relief, just knowing what it was. I had one ENT that was close in his diagnosis but for some reason he started talking about Anti-Seizure meds and it scared me so I left him. (silly me)
I then decided to see a Neurologist armed with all of Lisa's info and other information on the TSMB and he agreed that was probably what I had. He immediately started me on Clonazepam and it didn't help that much. He then added another anti seizure med called Trileptal and that has helped me greatly. I haven't had a pop or a click in several weeks.
I still live with the fear that it will start happening again and avoid noisy invironments because I believe that's what causes my stapedial muscle to go into seizures. Another of my ENT's thinks I have hyperacusis also. I am not totally convinced but at times I am very sound sensitive.
From what I hear this is a very rare problem so there is not a lot of information out there and the doctors are not very familiar with it. It's up to you to help in your treatment and getting across that this is not just tinnitus, it is a debilitating but very real problem.
Please feel free to ask ANY questions.
Your newest moderator,
Karen
