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Seizure clustering?
Mon, 06/12/2017 - 08:07Does anyone else have seizures that occur in batches or "clusters" while being seizure-free for many weeks or months in between? I will have multiple seizures over the course of 2-3 days and then I'll be fine for maybe 6 weeks or as much as 6 months. I know when I'm in this clustering period because I will have symptoms. I feel nervous and jittery, but at the same time my brain feels a little fried. I can't sleep, I have no appetite & I have a bad taste in my mouth. When I'm feeling this way, I'll have several complex partial seizures per day. Then, after 48-72 hours, I feel alright again and the seizures stop.
I've done quite a bit of reading online and there seems to be some question in the medical community as to whether this is a real phenomenon. Even my own neurologist has been skeptical. He doesn't seem the least bit interested in this part of my experience. To him, the world is black and white. You're either having seizures or you aren't.
I've been on medications a long time, but I think that even if I stopped taking them, I'd still have seizures in clusters. I was put on new medication last November, and I think it might actually be working, but over the weekend, I experienced the same symptoms that I typically have when I am having seizures.
I'd be interested to hear the experiences of others who are dealing with something like this.
Are there any doctors or researchers who are actively investigating clustering? I'm thinking that if there was a medical explanation for why I start feeling all of those other symptoms, there might be a way to treat that directly and perhaps prevent my seizures entirely.
Comments
Thank you so much for that
Submitted by Frank Castle on Sun, 2017-06-18 - 20:40
Thank you so much for that insightful & informative response.
My seizures used to cluster
Submitted by Roald on Thu, 2017-06-15 - 19:17
My seizures used to cluster several together after being seizure free for 3-4 months. Good luck getting any of my drs to listen to why. For the most part they are only interested in prescribed Rx from them and will not discuss any other part of the body in the slightest. I went to get a sleep study: bad news I don't have sleep apnea or snore so they can't sell me a cpap machine, although I went there for nocturnal seizures...their instruments weren't really strong enough to detect any seizures! Car accident- 7 fractured vert- severely disrupted sleep- seizures. I have a Dr for my back, sleep, and brain but they won't comment on anything other than their specialty. I got rear ended again and now have seizures clustering once a month. I imagined they won't listen to me until I literally have tried all Rxs and failed. For me the pain and especially disrupted sleep adds up over time and after several months off it my body/mind can't take it anymore. That is why for 3 years it was a 3 month cycle of seizures like clockwork, until I got reinjured worse and now it is every month. My Dr said it would be malpractice for him to comment on other parts or order tests etc so if your seizures have some triggers outside the brain good luck finding the right treatment or a Dr willing to look at all of the facts. Part of my problem is that I only considered gran mal seizures, actual "seizures" but there are many other kinds, including some of which that drs still don't acknowledge. I'm on my 4th neurologist, maybe you should try getting a second opinion. I hate it when one Rx doesn't work at all, makes symptoms worse, and has bad side effects but your Dr wants you to start 2nd or 3rd Rx on top of it and not stop taking the one that doesn't work. It's like being treated like livestock. I have seizures in my sleep. Then they continue throughout the day after getting up. Sometimes Rx helps to stop them from continuing but in most cases I have had to go to the ER.