Are seizures related to ME?

[Daffodil]

camping in the desert at 83? I love it

wonder if seizures could be a result of active hhv6?

 

[5150]

Don't know about the relationship between HHV6 & Seizures.

but, I have encountered them along the way. What helped me was to use the legal limit of Ambien. This helped me a lot.

 

[James_B]

interesting that some of you mentioned seizues while sleeping. i get those. they are very strange, and i have never had them while awake. my head and neck start shaking, can feel it most in the chin. nothing else in body is shaking. it actually wakes me up. doesnt hurt or bother me- just so wierd. then usually i fall back asleep and seizures start again. etc. not sure how long the whole event lasts because i am pretty out of it the whole time. when cfs is worse i get more of this, and when my cfs is better i get much less. had these for years.

does anybody else get this same type of thing?
thanks

An old post but this is exact like for me. Just strange! The jaw starts shaking fast (1 inch). Can feel it when waking up if in a weak period.

Epilepsy is in the outer parts of the brain. Almost everywhere "flashing" energy between neurons. Maybe this is a lead to go on.. I think the problem is close to MS.. IoW outer brain.

 

[edwardssusanb]

Hello All,
I'm new here. I wanted to share my experience with sensory storms/seizure like activity.

Two years ago I came across the term "sensory storm" in the CFS Treatment guide. It was the first reference I found to what I have been experiencing for four years now. I call them "attacks" and use the phrase, "I'm going down" when I feel my body headed in that direction. The most intense "attack" occured early on and landed me in the emergancy room as the left side of my body was dead weight and I couldn't talk properly. I was very weak for about 6 hours and wiped out for a few days. Even the milder attacks I've has since then are pretty dramatic and always involve a fairly rapid onset of weakness, an inability to walk coupled with a cement like heaviness in my body that demands me getting close to the ground, an internal heaving (this one is hard to explain - like I'm throwing up violently on the inside or an intense, whole body pressure), crying (not emotional - it's more like an involuntary release of pressure). It usually comes in waves. The first wave of high intensity, a short reprieve of a few minutes (in which I can usually make jokes and laugh), then two more shorter less intense waves. I can also get very painful muscle tightening in my neck and shoulders and sometimes become sensitive to light for a few hours afterwards.

Interestingly, these attacks interrupt the wretched background exhaustion and wired but tired feeling that are usually present (these attacks leave me wiped out but quite my brain).

I left the ER four years ago with the diagnosis of TMI (I actually thought I had had a stroke). My GP suggested I had a panic attack. I have no panic with these attacks and they continue to come; neither panic attack or mini-stroke seemed right. But, when I read about sensory storms in Erica's book, I knew that was me; my brain is having some kind of seizure activity.

 

[James_B]

Interesting, your post. I was one week ago in the same situation and spent the night in observation. My paralyses was on the left side, and only for 10 sec, when i was trying to sleep.

I think it is a energy (synapse) disturbance in the brain, probably the right side in this case. ME/CFS comes with a really big package of troubling details.