Seizure question

Discussion in 'Fibromyalgia Main Forum' started by ABLUV, Jul 14, 2008.

  1. ABLUV

    ABLUV New Member

    Hi gang, I need to know if anyone on this board has seizures yet remain conscious. If so, what kind of seizure
    is that? I have CFS, 12 years now. I have had the full body spasms, shaking legs and arms, eyes rolling up in my head, stop breathing for seconds, can't talk for minutes. I can not control body movements, can't hold my head up, can't even sit up or walk, my mouth opens & shuts involuntarily, eyelids blink fast or get stuck open or closed - yet I am aware of where I am, I just can't respond
    to others around me for several minutes. If this is not a seizure can someone help me figure out what this is?
  2. ABLUV

    ABLUV New Member

    hope to get some responses. maybe you know someone that knows someone with this problem. Feedback most appreciated.
  3. lrning2cope

    lrning2cope New Member

    but I have some relatives with epilepsy and you might want to check with your doctor to see why you have these spasms and the other symptoms. One type of epilepsy acts just like what you are descrbing. One relative has this type , where she just stops talking and stands there , for a short while ,staring . Then she comes back after several minutes and starts talking again.

    Like I said , I am not a medical professional at all . I am just telling you my experience. I hope this helps and I hope you can find out what is happening !

  4. jasminetee

    jasminetee Member

    I bet that's really scary. I haven't experienced that but I've read about petite-mal seizures in CFS. Apparently, they can be one of our Sx. Some people may be having them but much milder so they don't notice.

    Dr. Cheney writes about seizures and CFS. You may want to do a Google Search on it. I think you'll find a lot of info about it that way. It figures that he says our kind of seizures don't usually show up on an EEG.

    I wonder if an anti-seizure med like Neurontin might help you.

  5. poets

    poets Member

    Of all kinds. When he gets the tonic clonic or "grand mal" as they used to call them, he usually doesn't remember too much while they're going on, although he says he can hear somewhat and if he remembers seeing anything at all, its very distorted, as if things are "melting." He also suffers from terrific headaches and depression after the seizures.

    His neurologist has said there are over forty different kinds of seizures. They don't always show up on an EEG. All my son's EEG'S have been normal.

    I would recommend that you see a neurologist and find out just what's going on. Seizures can be so scary. I really feel for you. I agree that Neurontin just may be of benefit to you. But first you need to know what kind of seizure you're having.
    Good luck and keep us posted.

  6. scrappnmom

    scrappnmom Member

    What you are describing actually sounds like several different kinds of seizures.! I have Epilepsy and have several kinds of seizures. Mainly the kind of seizures I have are called Partial Complex seizures. In this kind of seizure though, you do lose awareness of your surroundings and what is happening. I never have any warning of these coming on and never remember what happened. My main signs of a Partial Complex seizure is to abruptly stop what I am doing or saying for 30 seconds to a minute, rapidly blink my eyes, and jerk my head, arms and hands. Then when I come out of it I wouldn't remember what I was saying before it happened. It has also happened when I was walking where I would abruptly stop walking, mid-stride and just stand there and sway back and forth, sometimes this would almost make me fall. My balance got very bad and I tripped and stumbled a lot until we got my seizures under control. I believe my seizures started as Petit Mal seizures when I was about 10 or 11 but changed to the Partial Complex as time went on.

    I also have Myoclonic seizures quite often where all of a sudden I will jerk, usually my head or hands or arms and sometimes legs. I have been known to have my hands fly up off of the computer key board suddenly with no control. Very unnerving and I would look around me when that happened at work to see if anyone saw me do that! Kind of embarrassing!

    I also have Photosensitive seizures if the sun is flashing through the trees or electric poles as I drive down the road. The sun would have to hit me just right for it to happen, but, it would really make me jerk severely! You didn't mention it, but do you "Feel" anything in your head when this happens to you? I didn't feel anything when these first started but as I got into my teens and twenties I became aware of a strange, electrical sensation in my head when this happened. It would feel like someone just turned the switch in my brain off! Also, I have had seizures during my sleep where that feeling would "feel/sound" like a bolt of lightening inside my head! It would really scare me but I wouldn't be able to wake up!

    I have also had Status Epilepticus, where a partial complex seizure generalized into a Grand Mal seizure and then it would not stop! Luckily, I've only had this happen one time, and that was in the OR having out-patient surgery under a local anesthesia! I was lucky it happened at the hospital with doctors all around me! I continued having seizures for about 45 minutes and I had all the nurses and the surgeon scared to death! They had had me take my seizure meds before I came to the hospital and they had given me Versed to keep me from having a seizure, and then when the seizures started they continued giving me Versed to stop it but it wouldn't! This is a life threatening kind of seizure. Many die from this! I don't recommend it! The anesthesiologist told the surgeon that that just doesn't happen! He said he had never heard of this happening under a local anesthetic. I am now written up in a medical book somewhere! The doctor wrote a case study about what happened to me! You definately need to see a Neurololigist to get this checked out! Luckily my seizures are under control with medicine.

    Good luck!
    Feel free to ask me any questions you have!
  7. star273

    star273 New Member

    YES! I had those. It was one of the first signs that I had FM. I would do it when I got real stressed. I would be aware of everything, even talk when I was having one, but it hurt so bad! Do you have pain when you have them? I was fully awake, could speak, but couldnt control my right side, it was only on my right side too. Not at all on my left and thats the side I have all the pain with my FM. They gave me Neurontin. I try to keep my muscles relaxed as much as possible now. It was major muscle spasms. I was going through alot then and I was so stressed. I think stress has alot to do with FM anyway. I feel so much better when I am not stressed. Also, I had an EEg, nothing showed up on it, and during the EEG they tried to induce a seizure, but nothing happened.
    [This Message was Edited on 07/19/2008]
    [This Message was Edited on 07/19/2008]
  8. ladude

    ladude New Member

    I am not a doctor but have seen doctors on TV and it seems like a seizure to me.

    After seeing a neurologist 2 years after the episodes he says I probably had a complex partial seizures. (He did an EEG recently and saw my video)

    I was awake, with uncontrollable shaking and in such pain I was screaming. It would get real bad and then subside and this happened over and over and over. I was taking .5 Clonazepam for sleep and finally figured out it started in the morning and never happened at night. So my doc said to up the Clonazepam to 3mg and it helped along with magnesium/taurine injections.

    I was so weak I could not even feed myself. It took months to recover. The hospital did an EEG and found nothing. I am surprised they could find which end to connect the EEG wires to. It happened in the during a long hot summer and I was not using the AC. I know we sweat out toxins and maybe I was keeping that crud in, who knows. Turns out I have low blood sugar too. Not sure if that had anything to do with it.

    If you ever go to the ER for anything other than something they can see or X Ray don't tell them you have CFS. I went to 2 different hospitals and the treatment was horrible.

    Whatever it is, so stop doing it! But if it happens again videotape it to show doctors! Even use your cell phone; it’s better than nothing.

    Hope this helps
  9. scrappnmom

    scrappnmom Member

    I can't remember who mentioned this, but, a seizure should Not cause any Pain! Unless it is muscle pain After a bad Tonic/Clonic (grand mal) seizure. I have never heard of or had, a Painful seizure. So, I think that would be something else entirely!
  10. p8tience

    p8tience New Member

    I was diagnosed with FM 4 years ago, which is when I started having these shaking episodes. Over the years, they began to get worse with full body convulsing. During the episodes, I'm aware of my surroundings and can hear people, but I can't control my body.

    I had overnight EEG where they found no evidence of seizure activity, although I had the convulsions over and over during that hospital stay.

    Doctors said that they were anxiety-based. When I'm stressed, I can sense when I'm going to have one. I can feel it coming on. The only thing that has helped is valium, rest, meditation, and yoga.

    They were scary as hell when I first started getting them. Now I know how to cope.

    I would suggest that you get an EEG to determine if these are epileptic or non-epileptic seizures.

    Good Luck,

    [This Message was Edited on 07/20/2008]
  11. star273

    star273 New Member

    When I had mine, I did have major pain. I also screamed. It was terrible. When I told the Dr. that, they didnt think it was a seizure at all. They dont know what it was though. I didnt think it would be a seizure either, not with all the pain. It was MASSIVE pain as someone else described. I dont know what they are, I guess just another wonderful side effect of our FM.
  12. Missizzy

    Missizzy New Member

    Abluv--I hope this is helpful. I've been diagnosed with audiogenic seizures which occur when I am exposed to sudden and unexpected noise. I don't lose consciousness but do lose bladder control and usually bite my tongue badly and vocalize. These seizures are very frightening for everyone and have occurred once at a Varsity Soccer game when my son made numerous goals in a state play-off. He lost the game as he was so worried about me and the ambulance that had responded. The whole thing was so humiliating that I've sworn off appearing in public at events.

    Another kind of full seizure connected with a fugue state is called a psychogenic seizure. These are caused by past trauma and unresolved PTSD. They look just like regular seizures but don't register on the ambulatory EEG monitors. I have a son diagnosed with this and he is frequently hospitalized for these. He is a vibrant and active young man, but because of past trauma, the police often find him seizing in strange places. He is in therapy for these but the prognosis is not too great. He is nineteen and learned that it doesn't matter what is causing your seizures--you still can't get a license to drive.

    The lesson to be learned, I guess, is that there are many many types and causes of seizures. None are to be ignored or minimized. The brain is so unbelievably complicated. I wish you well and urge you not to give up until you find a cause and explanation for your seizures.


  13. harmony21

    harmony21 New Member

    Hi darlin, I have seizures but they are called absent seizures or petit mal

    I can hear in a distance but not completly what people are saying and my eyes flutter and it lasts a fraction of a second

    All epilepsy is so different and you really need a neuro to do a EEG and see what is happening with you

    I have had the seizures for 50 plus years and they have never been controlled

    Let us know how you get on

    angel hugs and good luck

  14. harmony21

    harmony21 New Member

  15. bellydonna

    bellydonna New Member

    Mine are sometimes called seizures, other times called "restless leg syndrome" which can affect entire body: uncontrolled movements. painful for me but not for all who have.
  16. jole

    jole Member

    I think the two go together. After being dx'd with FM I began having more and more episodes where I simply could not drive without ending up in the ditch. It was quite scarey and I quit driving before I killed someone else or myself.

    When telling my neurologist about this, she said it was seizures...I would simply be unable to keep the car focus, and bright lights would have a severe kaleidescope (sp) effect, color and all. I could not judge distance, and all lights would turn into one great light...billboards, stoplights, eatery signs, etc. I would totally freak out because nothing made any sense.

    During the daytime, as someone else said, shadows and sunlight through trees would have the same effect on me.

    Also, I too have the "allover" RLS symptoms. My arms, shoulders, legs will jerk randomly. I can't control them and it's embarrasing. Also told this is seizure activity, but I really think it's just muscle reaction.

    As everyone else has said, please get it checked could be nothing, but again, it could be serious and you may need medicine to control it. We all care~
  17. frango2

    frango2 New Member

    EEG confirmed seizure activity- most likely partial complex seizures.

    I had never had seizures before. The cause was Lyme and co-infections Babesia and Bartonella. I treated the illness the seizures are gone.

    Lyme is a neurologic illness not a rheumatologic illness. Unfortunately it was falsely classified by the first person called in to study it... a Rheumatologist. He disregarded all the symptoms that didn't pertain to his field and unfortunately the label has stuck.

    My seizure activity never left me unconcious, just extremely confused, feeling like I was going to pass out, unable to think or respond to people. It was worse in a car or at a store- anywhere where there was a lot of colors, lights, and motion. Sometimes this would happen at home but mostly in busy conditions.

    I also would get terrible tremors- full body shaking like you mentioned in my legs first and then after a few months it was not in my legs but had moved to my arms. These episodes would come out of the blue (but I could tell when it was going to happen) and they would sometimes last for quite a while. I was conscious when this would happen.

    I Haven't had either of these now in a long time. I have been sick for 3 years and am continuing to eliminate the remaining symtpoms by treating the underlying cause.
    [This Message was Edited on 07/24/2008]
  18. harmony21

    harmony21 New Member

    Interesting reading guys, befor christmas last year I had a four day stay in hospital after a friend found me in a non responsive state

    I didnt recognise my husband kids and have no memory of the incident except of what I have been told

    Neuro doesnt know what it was, am on anti epileptic meds now which I have been on and off during my life

    I too find there seem to be so many more people with FM/CFS I cant believe it, is it becasue that we now have knowledge of it or what????

    angel hugs to all