FM with Seizures

Discussion in 'Fibromyalgia Main Forum' started by DarcieAnn, Dec 28, 2002.

  1. DarcieAnn

    DarcieAnn New Member

    Hello! I am 21 years old and have just been diagnosed with FM w/seizures. Thus far I have had the hardest time finding any information on how to control these seizures. Do any of you have any insight that you could share with me?
    Thank you so very much and God bless.
  2. tammyinwv

    tammyinwv New Member

    Darcieann,I hope you are getting treatment thru a doctor for the seizures.There isnt much you can do on your own.You might try to note if there is any stimulus that causes the seizures.Such as some people are triggered by flashing bright lights.
  3. Mikie

    Mikie Moderator

    FMS and CFS are characterized by brain seizures, often at such a low level that anxiety and sensory overload are our only clues that something is wrong. You need a doc who will treat you for this.

    I take Klonopin because the slight seizure state would not otherwise allow me to be able to sleep and my anxiety would bring on panic attacks. I suffer from sensory overload and slip 1/4 of a .5 mg tablet under my tongue when I sense that lights are too bright or places are too noisy. I will not set foot in a Wal-Mart during busy hours.

    Love, Mikie
  4. spaz

    spaz New Member

    Hello, My daughter has abdominal epilepsy,I beleive she got this the same time I got my FM during her birth. I took her to a ped neuro. she did not get much better with meds so I am now taking her to a chiropractor.She has improved and has been off meds for almost a year now. She never had clinical seizures,hers were partial and I never seen one.Her symptoms are severe headaches,abdominal pain,cyclic vomiting,abnormal eeg. Hope this helps. Spaz
  5. DarcieAnn

    DarcieAnn New Member

    Thank you all for your help. I am seeing my Dr. Monday and your information will be very helpful to us. I had several tests that have all came back showing that I have seizures, but I have seen seizures before and they are not at all what I am experiencing, I get blurry and multiple vision, a headache, get extremely dizzy, my hand tremors seem to increase, and then I just kind of shut down for about 5 min. when I wake up/come too/or whatever I am exhausted.
    My Dr.has me on Ativan, 0.5mg twice a day.
    All your help is appreciated more then you will ever know.
  6. tammyinwv

    tammyinwv New Member

    DarcieAnne,seizures can appear in different forms.I am anurse and we had one patient that when she had seizures she would start blinking repeatedly and a slight twitch.Some just kinda space out for few minutes,etc.You dont necessarily have the typical spasms that your thinking of.The fact that you sort of black out for few minutes does sound like a seizure.i am glad you are seeking help.I hope they can help you can some control.
  7. ipuke

    ipuke New Member

    Hi. I have abdominal epilepsy. I am a 38 yr old male. I was given phenobarbital as a child and the condition stopped, then I was taken off of it at age 9. I never had another s/z until poisoning myself with alcohol at age 21. I have had alot of experience in this field and could tell you everything about it from the stages of her s/z's, to why she acts the different ways she does, how she is feeling before, during and after each one. If you are still online,
    reply to this and we can talk more extensively.
  8. kgg

    kgg New Member

    Stress, being over tired, and bright lights can be a factor. Also, food allergies. In doing research for his condition I came across a book that discussed food allergies causing seizures. Well, sure enough, he had a major reaction to corn and it's in everything!!! When I took corn out of his diet, his epilepsy resolved. And his asthma improved. Hate to open another can of worms for you. But think about your 5 favorite foods, they could be allergens. Is there a common ingredient amoung them? If you crave a food that would possibly be another sign of allergy.

    Also, if they put you on meds for seizures, make sure they start you on pediatric doses. They have nasty side effects and we tend to be dose sensitive to meds.

    Best to you. -Karen
  9. contessa

    contessa New Member

    I won't drive anymore unless it's an emergency. I've had two times where I was looking for my turnoff and found I'd already arrived at my destination. Also a few times I've been doing other things and 6 hours later I just can't remember anything. But I haven't been tested for anything..I do have migraines triggers-noise, movements, lights, flickering etc. Also same results you are getting. My missing time episodes started last spring and when I see my neurology migrains spec EOM I am going to see if I can get tested for seizure disorders. Everything I have been tested for, EVERYTHING, has come back negative. I am the healtist, fibro sick person on earth. Everything is wrong, but can't test-prove a thing.
  10. courtney5771

    courtney5771 New Member

    I got seizures in Mar. They don't know what causes them and they are getting worse- gran mal and night seizures. I got FM when I was 20. I'm going to have to wear eeg machine leads on my head for 3 days- fun. They are also going to do a mental test on me because of forgetfullness.
    Maybe FM causes seizures in some people, because FM illness does come from abnormal brain hormones and other stuff.
  11. suz41

    suz41 New Member

    Hi Darciann:

    Sorry to read about your diagnosis, like FM seizure disorders can be real tricky to get under control. I developed partial complex seizures at the age of 13 after a head injury and it took a long time a trying different meds to get control of the seizures. I am now 41 with FM and controlled seizures. The other advice given was on target, you need to be working closely with a neurologist, also often stimuli such a bright lights, even florescent lighting can set off seizures as well as sleep deprivation, try to rest when you can. I used to take naps alot when my seizures were bad during my mid twenties. Also make sure you are maintaing your sugar levels, if you allow your blood sugar to drop it can set you up for a misfiring in the brain. Do you have an epilepsy support groups near you? I found them very helpful at many times in my life. You may also want to contact the National Epilepsy Foundation in either Arlington or Alexandria VA if you livein the states. I'm know this is a difficult time for you, howver please know that there have been many advances with regards to seizure meds in the past 10+ years. You may want to talk to your doctor about Neurontin or Klonopin which could help with both the seizures and FM. Keep us posted and know you have support. Gentle Hugs,