Bluesbrkr
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I have had Gelastic Seizures for about 3 years now. I was diagnosed at age 40. they just came out of nowhere. no previous sign or indications. It is definitely a frustrating and ultra rare form of epilepsy. So many doctors have even heard of it, much less treated it. I have even talked to some neuros who are not familiar with it. I was very fortunate to find a neurologist here in Salt Lake City who is familiar with it and am doing very well at this point. I went through the frustration and social anxiety as well. I felt hopeless often. All I can tell you is that it does get better. As for tests, my neuro went straight for the MRI and then a video EEG.
I would highly recommend finding not only a neurologist, but one who specializes in epilepsy and is familiar with Gelastic Seizures. Funny thing was, when I was referred to the specialist, I was told it would take 3 months to get in to see her. (put on the general seizure meds, which did help some). When they found out it was Gelastic, I was in within 5 days and in for video eegs and such almost immediately. They so rarely get to work with it that they jumped at the opportunity. Even the nurses that worked in the epilepsy clinic had heard of it, but never seen it. While I was in for the vid eeg, when ever I would have one, all the nurses would run in and then go watch the video. Pretty entertaining actually.... lol.
There is really not alot of information out there about adult onset gelastic seizures. believe me, I've scoured the internet, and, as you said, it is often misdiagnosed.
All that being said, please let me know if there is anything I can do to help. Compare notes, share my experiences, answer questions, etc. I'm glad to do whatever. It definitely helps to be able to talk to someone who has gone through, or is going through something similar. And this board has been great.. so supportive. It's a great place you've found.
Again, let me know how I can help.
Good luck
I would highly recommend finding not only a neurologist, but one who specializes in epilepsy and is familiar with Gelastic Seizures. Funny thing was, when I was referred to the specialist, I was told it would take 3 months to get in to see her. (put on the general seizure meds, which did help some). When they found out it was Gelastic, I was in within 5 days and in for video eegs and such almost immediately. They so rarely get to work with it that they jumped at the opportunity. Even the nurses that worked in the epilepsy clinic had heard of it, but never seen it. While I was in for the vid eeg, when ever I would have one, all the nurses would run in and then go watch the video. Pretty entertaining actually.... lol.
There is really not alot of information out there about adult onset gelastic seizures. believe me, I've scoured the internet, and, as you said, it is often misdiagnosed.
All that being said, please let me know if there is anything I can do to help. Compare notes, share my experiences, answer questions, etc. I'm glad to do whatever. It definitely helps to be able to talk to someone who has gone through, or is going through something similar. And this board has been great.. so supportive. It's a great place you've found.
Again, let me know how I can help.
Good luck