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NEADs for 4 months, hourly attacks day/night

Posted , 4 users are following.

john_1939
john_1939

At loggerheads with GPs, only to happy to send you private at £500 per hour. 

Can this illness be treated ( without  Prozac etc ), is their an effective treatment, i feel abandoned by the NHS, they don't seam able to work as a team anymore, and I get the impression, over 75, go home and die, you are no longer of use to society.

0 likes, 8 replies

8 Replies

  • JohnJohn86
    JohnJohn86 john_1939

    Posted

    I'm in the same boat John. GP's don't seem to believe that NEADs is a real thing, and they deffo don't work as a team. I even offered one a booklet I've found online, that has been completed by professionals I may add, and he didn't even look at it, AND tried to give me it back.

    I've read up, as much as I can, regarding the diagnosis and the only treatment I can see is psychological treatment such as talking therapy. I'm currently working with Mental Health professionals and hopefully this therapy will do the trick.

    • john_1939
      john_1939 JohnJohn86

      Posted

      Hi johnjohn, Had a run in with the doctor, Quote, what do yo want, i have other people waiting,

      What a stress buster, for  guy suffering and looking after a wife with dementia.

      Rang my local medical support unit, they were sympathetic, but said a complaint to the general medical council would be the only recourse, no chance. It would be nice if we could keep in touch.

  • mary50992
    mary50992 john_1939

    Posted

    Dear John,

       I had my first seizure after a heart scan three years ago. I have traveled a road seeking help but it has turned into  side roads full of negative responds from the professionals. Many trips by ambulance to hospital ERs when they happen when I am out and about. Days ago one of my brothers was taken off life support and past away. He had a stroke in the brain stem and there was no hope. One day only in ICU next he died. I was overwhelm with grief and had a seizure right in the chair beside his bed. I'm 63 years old. I find bright lights, strobe lighting, flashing etc. trigger these seizures plus a lack of enough sleep. I wear solar shields sun glasses in building with florescence lighting and to avoid these other triggers. I had three seizure at work and now am deem a "risk". No more job. I am applying for long term disability. My doctor believes I am a fake and attention seeker. I worked in the nursing field for 28 years. Feeling useful to society anymore should be put out of your mind. At our ages we have done enough. It is all about us now. I said to my doctor, this is my life, I deal with these seizures and my life goes on. Don't let them make you feel subhuman because you are not. Who are they anyways these doctors? Just providing a public service. My daughter said to me if anyone has the means they can become a doctor but it doesn't me they need a heart. My seizures happen when ever and they are real to me We just don't fit into the right peg hole. John you had a life and you are a life. Keep living it . Life's journey always has pot holes in its road.   

    • john_1939
      john_1939 mary50992

      Posted

      God bless you Mary for your kind words, Everyone needs a buddy, its not nice to be without one, Best wishes John.
    • danielle38664
      danielle38664 mary50992

      Posted

      I work in a care home and I’m allowed to be working with my seizures also i went to a party the other day and lights never bothered me but they did at this party I thought it was just people with epilepsy have these, I have had no problems with doctors and hospitals there have been really supportive and I’m being sent to cognitive behavioural therapy to keep me cope with my seizures but I don’t think you can it’s sad it’s taking over my life and I don’t feel like anything is wrong I have been through some sad times but I didn’t think they affected me but my brain obviously does I hope you get over these but if you don’t your still a strong person ❤️
    • mary50992
      mary50992 danielle38664

      Posted

      Dear Danielle,

           I too in the beginning when I first started these seizure had them night and day. I ended up in a seizure clinic for a week. Label "NEAD". Fluorescent  lighting, strobe lighting etc...excite the neurons in the eye sight center located in the back of the brain. "Normal" people enjoy the  strobe lighting effects but others reacted to it with seizures. The neurons excite other neurons around them and than spread in a cast aid triggering a seizure. I have to wear these solar shield sun glasses in buildings or suffer a seizure and a trip to the ER. TV programs, movies use strobing effects and commercials too. As time goes on you will find what affects you. I'm here for you.  

    • mary50992
      mary50992 john_1939

      Posted

      Dear John,

           Thank-you. We need to not feel alone with our physical problems in this world we call home. I'm here for you.

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