Free of seizures for 18 months after 15 years!!

Posted , 6 users are following.

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

0 likes, 24 replies

24 Replies

Prev
  • Posted

    Dear Paula,

     Hi, its Mary here. Be careful, not all seizures are related to NEAD. The so call doctors who believe that surpress memories of trama. childhood or what ever is the cause of seizures that have not shown to be real by EEG activity. In my case I was labal as DEAD but I had a sever allergic reaction to iodine as a contrast during a heart scan and also in the use in CT scans after the first seizures happen. Are you really free of NEAD? I haven't had a seizure in four months?There are many reasons for seizures and doctors are not god like.

    • Posted

      Hello Mary

      Thank you for your message and of course there are other medical reasons for seizures besides epilepsy.

      NEAD is more common in woman that develop seizures in their late teens and mid twenties. As I have mentioned in all my posts traumas are different for different people, and it does not have to be something hidden away in their childhood.

      Currently in the UK there are thousands of people on anti epileptic drugs, that do not have epilepsy. However for the NHS to review each individual is far too costly.

      I am delighted to hear that you know what causes your seizures and I hope they can now be controlled.

      Take care

      Paula

  • Posted

    Hi Paula, my name is Emily. I have been suffering with NEAD for over a year now. I was diagnosed in november 2014 at the age of 21. They began happening in june/july last year. I have exhausted everything and have been trying to find a forum with someone who has had NEAD and has been cured. I found your forum and it has brightened my day. I'm wondering if you could shed any light on the EMDR treatment and your experience of it? Look forward to hearing from you. 
    • Posted

      Hello Emily

      Thank you for your message. I know you where probably shocked when you where diagnosed with NEAD, but please know that you have no control over these seizures. NEAD affects people's lives in the same way as epilepsy, the only difference is the treatment. And further down the line you will be thankful that you do not have to take anti epileptic medication as it did me my brain foggy!!

      Not all NEAD's are caused by trauma, and a trauma for me may not be a trauma for you. You may have had a build up of stresses that you didn't even realise as life is busy, and you brain/body just can't process anymore. I often felt better after a seizure, not immediately, but nearly like it was release, if that makes sense.

      With EMDR your therapist will take a brief history, number of siblings, school life etc. Then you will think of events that upset you or annoyed you etc. You will then be asked to go through the event in your head ( you don't have to share the details with the therapist. You play it out in your mind and at the same time you will focus on either an eye movement or sound that you are comfortable with and your therapist feels is most effective.

      It is a very painless process and each session should last 50mins to 1 hour.

      My first post here Emily was 5 months ago, at that stage I was seizure free for 18 months since my EMDR. I am pleased to say that I am say that it still the case!!

      I will you the very best of luck and would be delighted to hear how you get on if you decide to embark on EMDR. 

      Take care

      Paula X

  • Posted

    Dear Paula,

       I had my first seizures after a heart scan, never before that. I was put on seizure meds, four kinds. The side effects are terrible. I am happy I am not epileptic. I had a seizure after a lung scan, air flight- landing and taking off and in the ER with a very painful aprain ankle. Pain travels up the nerves to the brain. Overload. My mother was a epileptic, one of my daughters has had seizures due to extrem pain etc and I have two sons who have had seizures. My oldest son is epileptic and that was something else to endure throught with meds, teachers etc...sick kids hospital.

       EMDR treatments maybe good for some but everyone has had trama in their lives. Who lives under a rock or in a bubble all their life??? Going over these memories is like a rerun . We each handle life situation differently. Each to their own strenghts. Doctors can only aid in healing phyiscal conditions, the rest is up to the person atitude and body. Get off the pot!!!!! 

    • Posted

      Hello Mary

      Thank you for your post. I think that before you can comment on the effectiveness of EMDR for NEAD you firstly have to have NEAD ( which you have said you do not, and secondly how can you comment on the effectiveness of a treatment if you have not had the treatment). 

      I understand and that we cannot rerun all memories however if it changes the quality of your life, then it may well be worth looking at. Not all people are emotionally strong and to ask for a little help is not something one should be embarrassed about it.

      I am very aware that Doctors can only aid in healing physical conditions, however if counselling or CBT where not proven to help certain conditions then they would not be available on the NHS.

      I have not come on this site for a dispute, but rather to draw on my own experience in the hope that it may be helpful it others.

      Many thanks.

       

  • Posted

    Hi Paula, I am afraid my daughter hasn't tried the EMDR yet.  She changed schools in September and wanted to wait to be settled first before starting something new.  The EDMR person I located suggested the same thing.  She's been at school for three weeks and has had a pretty stressful time so we are waiting for things to settle down before trying something new.  We had a few months free of seizures but this was to be expected as she wasn't in school.  She has since had two seizures in two weeks with the last one results in her getting concussion yet again.  She had only just recovered from the concussion she sustained in November 2014 which caused her to mementarily loose her sight and as a result got regular migrains.  She hasn't completely lost her sight this time but her sight is blurred yet again which will probably cause her to once again experience regular migrains.  She is sceptical about the EMDR but I am hoping she will give it a go - once she is over this next bout of concussion!
    • Posted

      Hi

      I am sorry to hear about your daughters recent seizures, and I totally understand that she needs to feel settled in her new school. EMDR will always be there for when you daughter is ready.

      Take care X

  • Posted

    Dear Paula,

        Thank-you for your post. I am non epileptic and happy for it. Be careful what you promot on this forum. Please reframe from emailing me .  

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.