Seizures

Does any one have Seizures ? mine started a couple of years ago as hand and arm tremors . Then I would get spells of being aware but dazed and then the tremors would come on . Then I went to grand mal seizures with a headache as a warning . Now sometimes I get the headache , sometimes not . At times I just feel spacey and tired and will pass out and go into it . I was sent to a Neurologist , I had and eeg and they couldn't induce it . I tried to tell the Neuro Dr. that mine couldn't be induced , they were a build up and just come . He wanted to stick me in a hospital , hooked to an eeg and wait for a seizure , I told him no because I knew it wouldn't happen . I can't make them understand . There are things that make it happen more often , stress , being upset , lack of sleep , sensory over load . Other times it just happens .

I am very interested in what you are explaining. I have experienced.“seizures” off and on for about 18 months. I also started with hand and arm tremors that quickly became my whole body. I ended up in the hospital for just over 4 weeks. I saw every possible specialist. I had multiple events while on an eeg. Nothing showed up in all testing that was done. The “seizures” come and go just as you have explained. The stress of the hospital was not relaxing. They continued off and on for another year. The only way they stop is an intramuscular Ativan injection. Each “seizure” lasts between 45-70 mins. I have gone months without an episode and then had multiple “seizures” a day for weeks. The “seizures” seem to weaken my already weak body. I was hospitalized this past August again because the “seizures” were out of control.

Again negative eeg, however I was diagnosed with Fibromyalgia/myofascial pain disorder. I couldn’t walk without seizing for days. Lights, sounds any over stimulus created the same result “seizure”.

These “look” like a grand mal seizure EXCEPT I have never lost consciousness. I did have a few occassions where I had trouble breathing because my head was thrown back so far I couldn’t catch my breath. I have been on various anti-epileptics through all of this. I now know if I am very careful and follow all the recommendations that came with the fibro diagnosis I am much more under control. I had one seizure since my last hospitalization. I am very careful now that I have a diagnosis and recommendations to follow. I see both a neurologist and a rheumetologist every 4-6 weeks. There has been no explanation for the “seizures”. I have a theory that they are full body muscle spasms related to the fibro. I am interested in anyone that has similar experiences. The “seizures” have turned my life upside down more than the fibro. I would love if someone else can explain. Thank you!

I don't have tremors but I do have instances of "dazes" and have had them since I was very young. I've not been diagnosed with seizures but think these dazes might be seizures.

Sounds very much like you really need to make sure to get enough sleep, adjust your surroundings to minimize sensory overload (turn off the tv, radio, turn down the lights,) and try to minimize the stress in your life, if possible. I realize that it's not always possible to do these things but just like people with migraines, it really does seem like you need to control your environment to minimize the events that cause you to have a seizure.

Yes Petunia!! Once I got the fibro diagnosis it has helped immensely. I know what influences amd stresses me better and can control my environment. I finally gave in and quit working. I am just eager to.see.if.I am alone or not. I also struggle with tremors in my hands all the time. Luckily they have been controlled very well by klonopin for some time. As with us all- it’s a learned balancing act!

Yes Petunia!! Once I got the fibro diagnosis it has helped immensely. I know what influences amd stresses me better and can control my environment. I finally gave in and quit working. I am just eager to.see.if.I am alone or not. I also struggle with tremors in my hands all the time. Luckily they have been controlled very well by klonopin for some time. As with us all- it’s a learned balancing act!

I wouldn't say I have real seizures. I do occassionally have small episodes of confusion and slowed speech, though. I have muscle twitches, especially in my eyelids (they're like in a cartoon, where the lower lid twitches nervously) and sometimes my jaw snaps shut or moves in a sideway jerk randomly.

The dazes, I feel I can relate to. While I don't really notice it when I'm alone, I notice them when I'm speaking to someone. Typically, I'd call my mom, wanting to tell her about my day, and somehow I just "fall asleep" on the phone. I forget what I wanted to say, when I remember to say something, it's slow and mumbly and sometimes rather random, I have serious troubles getting my thoughts together, am confused, can't really listen/take in to what the other is saying and so on.

I guess I only get that while around people, because if I'm on my own and my thoughts/reactions slow down, I don't really notice, because I slow down the rest of me automatically. Or something.

I did have a rare few "awake black-outs" where there are several moments just... missing. Like when I stopped in my car at a red light and the next thing I know is, I'm in the middle of the crossroads and it's still red. Or when I'm walking and I blink and suddenly I'm on the ground with a sprained ankle and no idea how that just happened.
It's thankfully REALLY rare, and I don't think it's a real seizure...