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Just a shout out to anyone out there in the MS world suffering from seizures? I hate hate hate hate seizures they started out about 6 years ago, which they were only strange staring spells, still was conscience, than when I lost consciences is when the whole thing took a turn south. Now I am on two different seizure meds, and the side effects suck, plus all the other stuff that they have me on for MS, some of it causes seizures, oh the fun of the medical world. So if you have seizures with MS, let me know how you are doing.
I'm replying to this post, because I'm not sure if what I've experienced would be classified as a seizure or not, and I haven't found anything in articles or forums that would explain it. I'm still in the process of being diagnosed, and finally have a full spin MRI this coming Monday! My brain MRI came back with "nothing of significance"... only a few lesions (1-2 cm) that are apparently "normal" in people who experience migraines (which I am). I still have many other symptoms though. But in the last month I have a strange experience, which happens at the time between sleep and waking up. I'll be dreaming when all of the sudden everything goes black, then there is a rhythmic, pulsing sensation and I can "hear" a ticking sound with it. Images similar to looking at articles at a micro-fiche flash before my eyes. I have no control over it, and just let it runs it's course. When it stops, I feel myself relax and finally wake up. My numbness & tingling and ability to walk are worse the next day. I have a dull ache around my eyes like they've been punched, and muscle fatigue has me shaking more than normal. I've googled "sleep seizures", and "seizures", but I've found nothing that sounds like this. It's only happened twice, and only started this month. I don't recall ever experiencing this before.
I'd love to know if you or anyone else has experienced this as well, or knows what this could be? I'll be discussing it for sure with my Neuro at my follow up for sure.
I have had some big seizures in the morning, usually around the time I get up normally, that would be anytime after 6 in the morning. I usually don't come around till I wake up. I have even gotten up at 10 in the morning, not knowing I had already been up twice and had two seizures. Not sure if that is the same for you, but get it checked out. When it all started I had staring spells, didn't know it was a certain type of seizure, so you never know you could be having seizures. Let me know and good luck.
So far I've only had the 2, nothing that I know have has happenned since in regards to those "episodes". Sorry you're going thru this. I had (finally) my neck and spine MRI last Monday. I hope to be getting a call from my Neuro this week for results. I'll discuss with her then.
I'm replying to this post, because I'm not sure if what I've experienced would be classified as a seizure or not, and I haven't found anything in articles or forums that would explain it. I'm still in the process of being diagnosed, and finally have a full spin MRI this coming Monday! My brain MRI came back with "nothing of significance"... only a few lesions (1-2 cm) that are apparently "normal" in people who experience migraines (which I am). I still have many other symptoms though. But in the last month I have a strange experience, which happens at the time between sleep and waking up. I'll be dreaming when all of the sudden everything goes black, then there is a rhythmic, pulsing sensation and I can "hear" a ticking sound with it. Images similar to looking at articles at a micro-fiche flash before my eyes. I have no control over it, and just let it runs it's course. When it stops, I feel myself relax and finally wake up. My numbness & tingling and ability to walk are worse the next day. I have a dull ache around my eyes like they've been punched, and muscle fatigue has me shaking more than normal. I've googled "sleep seizures", and "seizures", but I've found nothing that sounds like this. It's only happened twice, and only started this month. I don't recall ever experiencing this before.
I'd love to know if you or anyone else has experienced this as well, or knows what this could be? I'll be discussing it for sure with my Neuro at my follow up for sure.
Wishing you well!
Hunnybunny....
I am unsure if I have MS... doc is suspecting it. I do have a seizure disorder and know what you are talking about - I have complex partial seizures, absence and nocturnal tonic clonic seizures (aka - grand mal). I'm wondering if the flashing(like micro-fish) are how you experience aura's? Aura's can be different for everyone and dependent on they type of seizures one has. At night I'd have tonic clonic seizures and only a few times woke up just at the very end of it and what I experienced was my body completely stiffen like a board and then relax and like you was very tender the next day and very disoriented and tired (as like the complex partial seizures). After keeping a diary I noticed on the nights I was having seizures my dreams were almost real and very vivid and I'd always dream I was having a seizure and in my dream before my seizure I'd have an aura that seemed similar to my visual aura migraine. I am thankful I'm finally on medicine (carbamazepine aka tegritol). I've been seizure free for almost 6 months and again allowed to drive after a year of being prohibited.
Hang in there Kiki answers will come.... I know it's rough - write everything down to help your neuro at your next appointment. ♥
they started out about 6 years ago, which they were only strange staring spells, still was conscience, than when I lost consciences is when the whole thing took a turn south. Now I am on two different seizure meds, and the side effects suck, plus all the other stuff that they have me on for MS, some of it causes seizures, oh the fun of the medical world. So if you have seizures with MS, let me know how you are doing.
