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NEAD Diagnosis Treatment

Posted , 4 users are following.

Focal
Focal

Hi!

I've had focal seizures (cramping left arm and face) for 17 years. Frequency is about once a week. I'm not currently taking medication because Keppra at 1000mg was not working, I had had a reaction to oxcarb and I was and am too scared to try lamictal because of its possible side-effects. :-(

Recently I my first generalised seizure and had to be hospitalised. There they told me that they could not confirm I have epilepsy. They cannot confirm I have NEAD either but I was released without any medication or further treatment, except a referral to a psychologist.

I now presume I have NEAD and have started cbt.

Since then my seizures have gone up in frequency to about 3-4 a week and I am very anxious. I get them all times of the day, whereas before they would only show up at nighttime.

Two years ago I spent a year abroad and I went from approx. 50 seizures down to 3.

What should my next steps be?

 

0 likes, 10 replies

10 Replies

  • janet93405
    janet93405 Focal

    Posted

    Hi Focal ,

           I have also been recently officially diagnosed with NEAD which has taken two years !! The only medication I was given and still use occasionally is Diazepam ( but this is not recommended ) because of side-effects and dependency . I have also been referred to a psychologist for CBT which I doubt will help because my seizures are caused by physical pain .

          Can anyone tell me their experiences of CBT and does it work .

               I hope you get some comfort in our similar problems especially regarding diagnosis and treatment .

                         All the best from Janet .

    • Focal
      Focal janet93405

      Posted

      Hi Janet,

      Thanks for adding to the thread. How did you accept your diagnosis? Could you tell me a little about the types of seizures you have and if you have auras?

      I'm interested in this because neither NEAD nor E is confirmed in my case.

      I'm also sorry for what you're going through. Hope we both get control of our seizures quickly.

      All the best,

      Alex

  • joanne50073
    joanne50073 Focal

    Posted

    That's a big change in the amount of seizures that's really good, a big drop there, can I ask what is nead?

    • Focal
      Focal joanne50073

      Posted

      NEAD is an acronym for Non-Epileptic Attack Disorder. It is similar to epilepsy but instead of it being caused by electrical discharges in the brain it has another cause. Sometimes it can be caused by psychological problems, other times because of disturbances in the body (heart, etc.).
  • janet93405
    janet93405 Focal

    Posted

    Hi Focal ( Alex ) 

           My seizures were brought on by severe chest pain . I apparently had continual tonic/clonic ( grand mal ) seizures all through the night while in hospital . My whole body was shaking violently and I would be gasping for air . Nursing staff gave me oxygen and recorded my blood pressure as 210/95 .

       My last seizure was last night , I felt really tired but my body wouldn't relax , my arms and legs began to involuntarily jerk then I don't remember anything until it was over and I woke sweating profusely as if I'd been running . At its worst I've had about 6 an hour , but at the moment they are reduced to 1 or 2 a week .

           I hope this  has helped , best wishes from Janet .

    • Focal
      Focal janet93405

      Posted

      Hi Janet,

      Oh, your most recent one was last night? But great news that they went down to 1-2 a week.

      I'm have a lot of them. Every attack is different, mine are basically a pain behind my eye that causes my whole side to go into a seizure for about 30 seconds. I have really long auras, maybe up to 10 hours or so.

      I always thought my had something to do with epilepsy until I went abroad for a year and had only 3.

      I'm not sure what to do now or where to go. I'm doing therapy (cbt) so I'm hoping that will make things better.

      What do you think caused your chest pain? Did you have that just once or are you getting that everytime you have a seizure? Sorry for being so nosy, it's just nice knowing I'm not going nuts and that there are others like me out there.

      Take care

      Alex

      P.S.: two things helped me a little, so maybe I can pass them on too. A doctor said "It will NOT kill you, so don't worry about them". And it's just the way our bodies sneezes to release stress. And another thing is, NEAD's cousin is the good old migraine, except instead of suffering with pain for hours on end, our body releases the pressure in one go. That helped me, hope it helps others.

    • janet93405
      janet93405 Focal

      Posted

      Hi Focal , my chest pain is caused by cardiac syndrome x a rare form of angina which mimics a heart attack . If I don't stop the pain from getting out of hand I have multiple seizures . It is definitely a response to severe pain , I guess my body is screaming hey there's something really wrong , but to ignore these warnings I have major seizures . 

         I'm not sure if CBT will work with my physical chest pain but I will try anything . Hope this helps all the best from Janet .

  • mary50992
    mary50992 Focal

    Posted

    Dear Focal,

          Your email appeared in my email today. Your next step is to keep living your life for it is the only one you have. These seizures will come and go. Start any place any time. Nasty they are for sure. I have been having seizures for 5 years now. Keppra is known as Keppra-rage. It does a number on the brain with it's side effects. My seizures are trigger by flashing lights, fluesent lighting, lighting strikes, strobing, fast editing on TV etc...have you noticed triggers with your seizures?   

    • Focal
      Focal mary50992

      Posted

      Hello Mary,

      Thank you for replying. Sorry for the delayed response, it's been a busy last few days.

      I actually have not noticed any triggers at all. Possibly stress and a lack of having a nap in the afternoon. I like to get around 10 or 12 hours of sleep a day but right now I'm getting around 8. 8 is great for most people but I've noticed getting more sleep means less seizures. Besides that I just haven't noticed anything (I keep a seizure diary).

      I actually used to call it kepp-rage because while I was on it I was quite aggressive to people at work. Quite noticeably too (I made a coworker cry).

      Oh well, I'm trying to live with it. Actually I've having a little bit of success just ignoring the auras right currently. Even the seizures I can ignore to a point.

  • mary50992
    mary50992 Focal

    Posted

    Dear Focal,

        If a day goes by without having one of these seizures it is a blessing. If not it is a endurance. There are no answers, solutions from the professionals. If you don't fit into the epileptic peg hole than you are on your own ( deeply disturbed ). The fact is you are still you, one of a kind. I get on with life...besides when these do happen, they are your reality at the time.

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