My seizures keep changing

Posted by baadkins @baadkins, May 1 7:50pm

I've had seizures for 50 years. The last year has turned into sleep seizures. Day and night seizures have always started with falling back then floating feeling that turns into a seizure. Last night same feeling that I have had for fifty years but suddenly felt like I was falling (floating) every direction at once and head just felt overwhelmed. I didn't come to for about 5 hours. Has anyone else felt this way. Don't understand that change after 50 years. Just concerned

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Chris Gautier OR Santosha | @santosha | May 2 6:08am

Hi @baadkins
I am sorry to hear that. Sleep seizures must be terrible, as they affect the quality of our sleep, a major trigger to seizures.
I have not experienced that kind of seizure. But I do also feel that my seizures have been changing over the years. I, for example, started to have some motor complex partial seizures, something I did not have before. My auras do last less time than before, making it more difficult to take action before getting into a complex partial seizure.
From what I have been reading in epilepsy groups I participate in, many do feel changes in their seizures over the years. Unfortunately, it seems something normal to happen.
Have you talked to your epileptologist or neurologist about that? Did your routine change in that past year? As I have learned and experienced, there are many triggers to seizures. Important that each one learns what are his or her triggers. Trigger management can be quite helpful.
Wishing you all the best!
Chris (@santosha)

tonyde | @tonyde | May 4 8:43am

Seizure activity does change. Is there anything different in your life Things like a fall, change in diet, autoimmune disorder such as diabetes or shingles, heart, more physical activity, stress or any of the hundreds of other causes that start or impact seizures. I've had seizures for 25 years, mostly controlled for 20 of those. I had a bad fall in October 2023 and now completely out of control and more severe. Sleep seizures also started, they are stronger (a weird form of grand mal) with a very short aura because I am asleep. First time I needed an ambulance to take me to the hospital.