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Non epileptic seizures

Posted , 6 users are following.

Kaydey686
Kaydey686

I'm eighteen and Ive been suffering with NES for a year with ten episodes a day with the shortest being ten minutes and longest about 3 hours, currently having EEGs and MRIs, just wondering if anyone has been able to manage it or been able to live a normal life with it, as im not allowed to travel on my own or be on my own for large amounts of time. I miss independence, and just hope this isnt the rest of my life.

0 likes, 8 replies

8 Replies

  • tracy50331
    tracy50331 Kaydey686

    Posted

    What happens when you have a seizure?
    • Kaydey686
      Kaydey686 tracy50331

      Posted

      It used be plain passing out, now ive started convulsing and brief moments of not being able to breathe.. Hospital say this is normal for PNES but how could this be normal...
  • mary50992
    mary50992 Kaydey686

    Posted

    Dear Kaydey,

            I have had these seizure or episodes as I have been told they are for five years now. Some doctors do not like them being called seizures!!!  When I go out and about I wear a DirectAlert . This is a device that alerts my daughter at her work place and calls a ambulance for me. It works on GPS. I get auras that warn me of a seizure, in fact the aura is a part of the beginning of the seizure. There is a button which I can push to talk to the alert station for my needs. The device detects a fall also. I have used it several times now alone and out with my daughter. When you have 3 hour seizure is it a seizure after a seizure with no recovery in between? I manage to live my life because you have to have one. Just go about it. Some days are none stop seizures and others are not. They happen when they happen. I have had them everywhere. My daughter prefers to go places with me when she is not working. Me go alone somewhere upsets her. I told her I need to live my life. You will find your way. I here.

    • Kaydey686
      Kaydey686 mary50992

      Posted

      Hi Mary, thank you for the reply, and the doctor refers them as seizures but i do hate the word. The 3 hour ones are very rare now but its just one continuous black out. An ambulance is not needed every time and i live on my own so i know what to do on my own but im scared that this is gonna be my whole life and i really dont want it to be. I get worried that if i have an episode infront of people they will call an ambulance but theres no point because it doesnt show on any tests that im in an attack/episode. Is there any medication or treatment to help with these??
  • mary50992
    mary50992 Kaydey686

    Posted

    Dear Kaydey,

     

        Oh my heart goes out to you. When I have a warning aura but not always I can take Ativan  which is picked up by receptors in the brain that calm the neurons from being so excitable. It pulls me out of these seizures within 10 minutes. My heart rate goes over 200 beats per minute and my blood pressure is extremely high during this. I take 2 mg at home or out and about when they happen. In the ER I am given this med through IV. It works for me. People will call a ambulance if they happen somewhere. As I have said with my daughter that she just can't put me over her shoulder and carry me home. How long have you had these seizures? You are blacked out during them or are you there but not in time and space. By this I mean unable to move, talk or think? I hate them too but they happen. I understand how you feel to the full, nasty. We want to be in control of our life but... only can cope with what we can't. Doctors do not have all the answers. Only Almighty God knows why. I know for certainly I can and will most likely have one any day at any time. My daughter is worried about me going to a office to have my income tax done. Fluesent  lighting can set me off etc...I'm a walking time bomb. Kaydey, I'm 64 years old and I have more time behind me than in front of me.  Hope for the best and live for the most. I'm here. 

  • corid72
    corid72 Kaydey686

    Posted

    Hi Kaydey,

    I'm sorry to hear what you're going through! Has anything changed for you? My daughter starting having seizures about a year ago as well, she's 24 now and is experiencing so many of the same challenges as you it seems. She still lives at home but so misses driving and her independence and just being able to take off and go somewhere for a few hours alone, it makes her so sad. I have forever been trying to get her to talk to someone who may be experiencing some of the same things as her but haven't talked her into it yet. Just thought I would see how things were going for you and if you have hit a breakthrough at all! If there is anyway you could email me instead of replying here that would be great as I have visited so many sites lately that they all mix together after a while lol - if you won't mind my email is if you prefer just replying here I completely understand. Hope this message finds you having a seizure free day!

    Cori

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • kennyatw
    kennyatw Kaydey686

    Posted

    Hi, I read your post and I was diagnosed with it when I was about 7. I had my first real seizure when I was 15 and sitting in school. They put me on phenobarbital and a year later I had another one so they upped the dosage. Then when I went to California about 20 years later I saw a neurologist there and he put me on carbomazepine and said I should never have another one. Here it is 35 years later and I have had none. I would ask your doctor about it and see what happens.

    Good luck with it

  • EllyG
    EllyG Kaydey686

    Posted

    I started to have NES at the same age as you did. I was at university and it caused me to have to repeat half a year which looking back, after 10 seizures a day too wasn't too bad.

    I am very stubborn which has helped me to be independent. I had another set of seizures only last week but I finished my degree, got various jobs and am now a lecturer in a college. It is possible to keep your life on track. Take medication you find helpful (for me it's Propranolol), seek support, change GPs if you do not find them helpful. Take trains and buses but you can take driving lessons once you are stable.

    Hang in there!

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