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hazel70459
hazel70459

Hello never done this before but i found reading your comments are helping me prosses what i have been told today. ok i will try not to go on, I am 42 since I was 30 my health started to go for a better word tits up. first told had Asthma get treatment for that next carpol tunnel syndrome had surgery for that , I also have fibromyalgia ( after a long time to be diagnosed)  but for around 7 years on and off I had seizures which left me with stroke like symptoms , these symptoms of not being able to walk or talk properly would last hours or even a couple of days. ok get to the point ,run up to christmas 22nd seizuers muscles tighten , eyes roll back basicaly it looks like i am being possed , i like to call it " The emily rose" they start then stop from anything from a few mins to 1 hour, they have continued up until this day , stayed in hospital for two nights monitored even though these things are going on with my body i can hear just cant respond until muscles have relaxed in jaw, Dont normaly call an ambulance but this was particualy bad started retching and my body is just so tired, i could hear my daughter who is 17 and very good with me arguing with my husband to call one Its hard on your family as they feel useless. anyway as i said was being monitored (around 15)saw juniour nurologist who checked me over said the same kind of patronising things you get used to stupid things like " why are you here" whats wrong with you , why has this started again. I am thinking here we go again, and the way they look at you as if your making this up, I feel more stronger at my age now to actually say can you please stop patronising  me and just listen, I am a bubbly person , yes i have had child hood trauma and have had cbt for it , very helpful , i face problems as they arise , dont stress lifes to short . I had an app for monday 9th with a nurologist waiting for as is my boss as i am off work, all geered up for this app video daily report ect , I thought this one isnt going to phob me off, well this lady phoned me after an hour of me getting home to say dont go to that app as i am being referred to a different nurologist as i have functional seizures .and there is a long waiting list, lifes in limbo!!!!!!!!!. getting medi braclett so as to not let people call ambulance and also list other things, i do get a warning so any one around me I will just have to quickly explain. I asked about my job she said well you can try going back I am a waitress in a lovely deli, not sure customers will appreciate my emily rose plus health and safety, dilema!!! . sorry for going on , this felt good to chat my spelling isnt great, feel free to comment were all in this together and at least we believe each other. must say sense of humour is a big help i take the p*ss out of myself all the time. going to sleep now .

0 likes, 6 replies

6 Replies

  • paula76344
    paula76344 hazel70459

    Posted

    Hi I have suffered from NEAD for over 15 years. I am 36 and was first diagnosed with epilepsy, tonic clinic seizures. I met several neurologist throughout the UK to get my diagnosis as I suffered 3-4 seizures a week. I had counselling, anti-depressants, CBT but they all failed. Last January I heard about a treatment called EMDR and I embarked on it. After 5 sessions my seizures stopped. 18 months on and I have been totally seizure free. I can not recommend this treatment enough. I would advise anyone suffering from NEAD that this should be their first port of call for treatment after 15 years of suffering. I am free from NEAD xx
    • mary50992
      mary50992 paula76344

      Posted

      Dear Paula,

               I haven't had a seizure for two months now, am I free from NEAD also? Curious, what does your treatment called EMDR involes-drugs ?Tell us what the treatment is. I'm so sorry you suffered from seizures for over 15 years. I suffered for 1 year and it was horrible because I sought out help and was discarded -all in your head etc. What doctor takes anyone serious who doesn't pass their tests for real seiizures with flying colours? I'm truly happy for you. I was on meds for seizures with terrible side effects. Who wants to live like that?

    • paula76344
      paula76344 mary50992

      Posted

      Hello Mary

      It's hard to say if you are free of NEAD after 2 months as I don't know how often you had seizures. I hope you are. I am a bit of an oracle on NEAD as I had to deal with it for 15 years & have seen consultants & professors. EMDR does not require any drugs, I have included a link!! http://www.emdrassociation.org.uk/home/index.htm

      I really feel that this should be the first treatment to patients suffering from NEAD as it is so successful.

    • mary50992
      mary50992 paula76344

      Posted

      Dear Paula,

          Thank-you for your reply to me. I will look up the link. It will soon be 3 months without seizures. For a year I had seizures some times up to over 100 a day. Ended up in hospital. Was put on anti-seizure drugs. Did EEG , CT scans and MRI. Happy they all came back clear. Had my first seizure after a heart scan with iodine as a contrast. ER visit, CT scan-iodine contrast. Back to hospital and another CT scan, more iodine. Label NEAD. Life is better without the seizures and hope it continues in that direction. Thanks for the link once more.

    • mary50992
      mary50992 paula76344

      Posted

      Dear Paula,

           Forgot to tell you that I am severly allergic to iodine. My grown children though they were doing what was right for me (CT scans) when I was not able to say for my self due to being out of it with seizures

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