74 +

Posted , 5 users are following.

It has been about that long that I had my first one.  They have changed over the year from knowing what is going on around me, but never been able to talk....to grand mal to my mind going blank and still could do things., and now i do not know when they are always coming on.  One thing has never changed, and that is the horrible feel before I have one and sometimes the feeling will stay with me for days. It comes on like lightning and really scareds me to death,  There is not words on earth that can explain the feeling. It is like I  am in your world, but you are you are not in my world.I need to have someone around me, but I know they can help me.

I am on 3 mediciness and they still do not controll them.  I probably would be dead if I did not ake something though. Does anyone go thorough something like I do?


1 like, 10 replies

Report / Delete

10 Replies

  • Posted

    Hi Nancy

    Sorry to hear this

    I'm suffering as well, I haven't had a grand mal fit for years but I do twitch and my epilepsy is very well controlled (normally)!!

    However since being on the change I have feelings like I'm going to have a fit but I don't (I can actually see myself have one but I don't if that makes sense)

    Sometimes I have these sensations and I end up with a headache!

    I'm not sure if my epilepsy is changing or whether it's anxiety

    So I do kind of understand how you feel


    Report / Delete Reply
  • Posted

    '.......sometimes the feeling will stay with me for days '.

    I get that and they're called 'all day' Auras, or better named as Simple Partial Seizure (SPS). I know exactly how you feel, it's like on the outside looking in. SPS are the most difficult to control. Clobazam are a quick fix. But ask your doctor about VNS therapy.

    Best wishes Karen

    Report / Delete Reply
  • Posted

    Nancy The first part of your description sounds like what I went through as a kid with petit mal. I stared out in space and could hear and see people but was unable to respond. (I couldn't function) It’s been too long to remember if I experienced auras. Now I have combination of secondarily generalized tonic clonic (grand mal) and complex partial seizures. I usually have auras before going into a seizure, not always. My Dr. considers the auras as a seizure. I can’t describe what my auras feel like but it is the worse experience I’ve ever gone through. Last year, for over a month, I had auras on many nights just after going to bed while still awake and just after waking up in the morning. They were always paired, one at night meant I could expect one in the morning. On some occasions, I had up to 2 tonic clonic seizures in my sleep, but my Dr isn’t sure. I am, I was there. Even though I haven’t had a problem before going to sleep for the last year, I no longer lay in bed when I wake up, I get out of bed.

    In a grand mal seizure, a person loses complete consciousness. So if you’re able to function, I don’t they are true grand mal seizures but may fall under a different category(s). There are many types, or combos of epilepsy, no 2 may be alike. Being correctly diagnosed is important and may effect what meds to try. Have you had EEG’s or a MRI?  I’ve gone through a host of meds, it becomes a hit or miss experiment. I don’t think I’ll ever remain seizure free. After my problems last year, my Dr. kept me on the same 2 meds but raised the dose of one with better results. I would ask your Dr about changing meds or combos. I’ve been on some with side effects I couldn’t tolerate or just didn’t work.

    One aspect I wish my Dr would do is blood test to how much of the medicine is in my body. The only time he did blood work ups is when I was on Dilantin.

    I live in the U.S., and if I didn’t like my Dr, I’d find another and get another opinion. I’ve had the same Dr for 25 years, but at one point he sent me to another Dr for tests.

    You may want to consider getting a medic alert necklace or bracelet when you go out in public and have a problem.

    Take care, Steve

    Report / Delete Reply
    • Posted

      Your epilepsy, which is a combination means that the seizures are not from one area in the brain but from multi points, like me. That's why I am not suitable for surgery to remove scarring. Steve have you been tested for a rare genetic disorder called tuberous sclerosis complex? Also ask your doctor about vagus nerve stimulator, which is a 'pacemaker' for the brain.
      Report / Delete Reply
    • Posted


      You got me on what tuberous sclerosis complex is. I looked it up and I don’t think it applies to me. An eye injury when I was a kid left scar tissue on the brain and that is thought to have caused the development of epilepsy. After a 3 day stay in the hospital in 2010, and some problems afterwards, my Dr. suggested the VNS. Call me a chicken, I’m afraid of surgery. I spent hours on the web looking it up back then and today. Plenty of info of how it works, harder to find peoples experiences. Some had the same fear of surgery, many people liked the results of decreased seizures and less meds, and some said they had it removed because of bad side effects, which has me concerned (chicken again). I see my Dr next month and might bring the subject up again.

      My insurance will cover the cost of a VNS. So have you had your VNS activated? Maybe with a positive experience, you might make me a little more hawkish and less chicken. I won’t even change a light bulb unless the lamp is unplugged. My brother doesn’t know it yet, but he’s going to replace a broken ceiling fan for me.

      Hope your VNS improves the quality of your life. Take care, Steve

      Report / Delete Reply
    • Posted

      HI Steve, thanks for your message. The operation was very straightforward, of course there's some discomfort but ibuprofen helps a lot, for me it's worth it because it's going to turn my life around, the way I look at it is ONE DAY of discomfort and thousands of days to look forward to and be happy and not frightened constantly. I had vns activated 8 days ago, a bit weird at first, I've got the 106 and noticed a change in my heart rate at the time I have Auras not as panicky, I've used magnet twice, the magnet gives twice the power as the vns setting, so it means I have used 0.75, it's almost healed now swelling gone down. Only on the lowest setting 0.25 but I'm really positive about it. I get it ramped up in 3 weeks. I'll keep you posted, but can recommend it to anyone who wants a better quality of life.
      Report / Delete Reply
  • Posted

    hi Nancy

    you seem to be going through a tough time at them moment, i get funny sensations before a seizure that gets worse and stays for longer when im tired, been on the computer, or watched lights of some sort. it also takes longer for me to gain conciosness after bacuase of this. it might be worth looking into. good luck and feel free to ask any questions.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up