Type of 'seizure' during sleep??

Discussion in 'Fibromyalgia Main Forum' started by chloe_s_mom, Aug 2, 2011.

  1. chloe_s_mom

    chloe_s_mom New Member

    Not sure if others have experienced this, hope that I don't sound crazy, but I feel that I have, on a few occasions, had what felt like a seizure during sleep. Not a limb jerking or the feeling of falling, but rather a full body wave of uncontrolled shaking. Not long lasting, but really disturbing, makes me feel a sense of panic as I am trying to wake myself. Yesterday, I had two of these occurances in a row, and once they were gone, everything was calm (I also tend to a tremor in one hand/arm, which can stay with me for weeks and then disappear into thin air).

    I've tried searching on the net, this site, etc and have seen some posts about seizures/FM, usually for those who have epilepsy.

    I've only ever had one waking seizure in my life, and that was in my twenties. Early morning exam at university, I went outside to smoke (smoker at that time), and I think that my blood pressure must have dropped or something but it was the weirdest thing - I started to shake, fell to the ground, and had no physical sensation of the ground. It passed, I got up, wrote my exam (didn't know what else to do) and aced it. Hmm.

    Wonder if others had an experiences or info to share?
  2. Mikie

    Mikie Moderator

    Even if others have had this symptoms, it's important to report anything new to our docs.

    Love, Mikie
  3. chloe_s_mom

    chloe_s_mom New Member

    for responding. I need to make a list of things to bring up to my new GP (if I can find one who will treat me.....).

    I was seen by a neurologist for MS, which was ruled out.

    I sometiimes feel overwhelmed with different ailments/issues and feel like I have a long laundry list, and worry about not being taken seriously.
  4. Forebearance

    Forebearance Member

    Hi, Chloe's Mom,

    I'm not sure if this is relevant, but I have heard of people with CFS who get seizures as a result of exposure to mold toxins.

    I hope you can figure it out. It sounds really disturbing.

  5. kat211

    kat211 New Member

    As someone with a history of seizures I cannot stress how important it is that you make an appt with a neurologist right away. I haven't had what the Drs can classify as a seizure since I was pregnant 9 years ago, but I have had 2 very strange/scary neurological episodes that still remain undiagnosed w/in the last 6 months. Although I am on anti-seizure meds for migraine prevention.

    While I was having the majority of my seizure activity, I had many during my sleep, which delayed in my diagnosis. Dependent upon what is really going on with your body and inside your brain, delaying diagnosis and treatment could risk permanent injury. It could be a warning sign or a symptom of a treatable problem. you won't know until you get looked at.

    Oh, and no, you do not sound crazy.
  6. chloe_s_mom

    chloe_s_mom New Member

    Thanks for sharing Kat - I completely forgot to bring it up to my GP today (a new GP, had to get my pain meds renewed, explain that the GI discovered that I have a severe esophageal stricture, etc and FORGOT to explain re the seizures - now I'm annoyed with myself).

    Were you aware of the seizures while sleeping? I just found out that my mum, who has CFS, thinks that she too is having them (or has had some) while sleeping.
  7. pamelakc

    pamelakc New Member

    My brother has Fibro just like me and he also has seizures, it seems that the seizures came first but maybe not. I need to tell him that the two may be linked. Thanks for all the info. Pam
  8. Mikie

    Mikie Moderator

    That people with CFIDS/ME often have brains in a slight state of seizure which produces muscle cramps, cognitive problems, tinnitus, sensory overload, etc. He recommennds Klonopin. It has helped me tremendously. Anyone considering it should know that one does develop physical dependence, not the same thing as addiction, and if one wishes to discontinue it, one has to sloooooowly wean off.

    Seizure activity isn't rare in people with CFIDS/ME and/or FMS.

    Love, Mikie
  9. kat211

    kat211 New Member

    I was had a seizure while I was asleep until I had woken up and felt famished and my entire body ached like I had just competed in a triathalon or been beat by a baseball bat. I would also tear the bed sheets apart no matter many or few wear on the bed, or I would wrap myself up so tight I couldn't move. Also, I used to get unexplained bruising on my hands and feet. Turns out it was from beating them b/w the bars on the brass bed I had while I was having a seizure!
  10. chloe_s_mom

    chloe_s_mom New Member

    for this info. I've seen this drug's name come up before in this forum and will look it up - much appreciated.
  11. chloe_s_mom

    chloe_s_mom New Member

    that sounds sooo scary. Had you had a sleep study?
  12. kat211

    kat211 New Member

    at least not that I can remember..... HaHa! Seriously though, I don't think I've had one during waking hours since I was pregnant in '02. I did have a spike in seizure activity during my pregnancy, but surprisingly not right afterward while I was breastfeeding and still off of meds. It was scary at first, but once we got used to them and knew what to expect and what to do, it took the fear out of it. Just to be clear, the seizures I am talking about were caused by a closed head injury long b/f I was diagnosed with fibro or even had the fibro symptoms that lead to my diagnosis.

    Fortunately I usually have a 'tell.' I get a tingling sensation around my mouth and nose and my vision goes wonky prior to one coming on when I am awake. If I feel it coming on, I get to bed as soon as possible. Since my head injury I have always been able to fall asleep anywhere and at anytime, (great party trick!), so I can usually get to sleep b/f they come hit full on.

    On the flip side, I refuse to do a sleep study. I will not sleep in front of others. Yes, I have fallen asleep at bars, in class, etc, while in college but I refuse to be hooked up to machines and recorded while I sleep. I've got issues I guess.
  13. chloe_s_mom

    chloe_s_mom New Member

    the smile and for sharing, Kat211. I like that - great party tricks :)

    Before fibro, I used to sleep sooooo well. So soundly! Now my husband is able to drop off to sleep almost instantly (as does one of our dogs hahahha!) while I'm left to toss and turn and be uncomfortable :(

    I did go for a sleep study and was told, in the early morning, that I had acheived REM sleep, to which I responded, I KNOW that I did, as I had a nightmare about this place!!
  14. scotlandrose

    scotlandrose Member

    When I was first coming down with CFS, my family doc recommened a sleep study. I assured him I slept GREAT. He said prove it. Thinking I would prove him oh so wrong, I did the study.

    I was having approx 2 seizures a minute, sometimes more, sometimes less, all night. Very little REm sleep at all. Lost that bet!

    I had Periodic limb movement Disorder. Yes, they were seizures, but just a big leg jerk here, hand twitch there, wiggle wherever... I did sometimes get bruises on my hands I could not remember how i got. I was hitting the headboard of my wicker bed with the back of my hand. Sometimes woke and felt like my calf had a cramp or was pulled. Little things you kinda blow off.

    The knowledge of my lack of sleep suddenly made sence of a lot of things i was chalking off to other things.

    Put me on Clonopin, took the study a few months later, and i hardly moved at all! Finally sleeping made me feel better in little ways I did not expect (had a little more energy but i did not feel a loss of energy at the time). Just weird little things. As i got sicker, I felt worse of course and all the "fun" new symptoms... The sleep study did not seem that important anymore when i was dealing with the shock of CFS...

    I still take Clonopin now, and another sleep study showed I am sleeping fine. I sure don't feel like I used to though! I would be much worse off if that doc had not given me the dare to prove I was sleeping fine! Hated losing the bet though!

    There are lots of weird sleep disorders and i will be the first to admit, when you are asleep, you definately do not know how well you are sleeping.

    Sleep is so damn important, for everyone, not just us. Yeah, the test is a pain, but you can learn things. Having PLMD would not be my first choice of discoveries in my sleep. Why could they not have found out I still speak the Latin i learned in High School in my sleep or something cool like that!

    Good luck and Sweet Dreams.

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