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Free of seizures for 18 months after 15 years!!

Posted , 6 users are following.

paula76344
paula76344

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

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  • jacqui77011
    jacqui77011 paula76344

    Posted

    Hi Paul, where to you get this EMDR?  I'd be interested to know how you carried on with normal life!  My daughter is 16 and started having seisures 3 years ago.  She has been known to have 2 a week but has been having them every 2 - 3 weeks since November as she banged her head during a seisure in both Novembewr and February and ended up with concussion.  With this concussion she became partially sighted.Her sight hasn't completely returned yet but is better than it was.  In the past when she got concussoin this delayed her seisures for a while.  As a matter of interest, did you go to sixth form and university and if you did, how you managed with seisures so frequently and are you able to drive?  To my knowledge, she won't be able to drive until she is clear from seisures for a year.  If you cannot drive, do you get a disability allowance?  She is doing her GCSE's at the moment and I am just a bit concerned about how she will cope with sixth form and whether she'll be able to get a job.  She has tried to do volunteer work at some local charity shops but as soon as they heard she has seisures, they weren't interested and never called her back.  I'll really appreciate your feedback.  Jacqui
    • paula76344
      paula76344 jacqui77011

      Posted

      Hi Jacqui

      My seizures did not start until I was 21 so I had finished university. I will not lie to you for approx 12 years holding down a full time job was very difficult & I did miss out on a lot. I went through all the treatments advised by the NHS (to be honest their knowledge on NEAD was limited despite what they thought). I was in and out of hospitals. I read up on EMDR on the Internet and found a reputable clinic. I did ask a Consultant physiatrist about it. She recommended way above counselling & CBT etc. It is not available on the NHS. In total it cost £700. A small amount to get my life back. Now I have a career, I work full-time, I am married, I do drive & have a great life. For the sake of your daughter I can not recommend this therapy enough.

      Paula

  • jacqui77011
    jacqui77011 paula76344

    Posted

    Thanks for your feedback Paula.  I've emailed a clinic local to me as they offer the treatment there and asked them for more information.  Reading the info on EMDR, it is good for trauma, my daughter doesn't know why she is depressed and has never experienced any direct trauma - was this the same with you?  I am so glad to hear that you are able to live a normal life - there is hope then!  My daughter was saying that there is treatment for NEAD in New Zealand, if it works, I wonder why they don't offer it in the UK.  The sad this is, I agree with you, the doctors don't know much about NEAD and they don't have the necessary money to spend researching it, hopefully one day they will know more about it and be able to stop it.  I will get her to give the EMDR a try, she's got nothing to loose.  She is leaving her secondary school shortly and her psychiatrist believes this will be the  making of her - I am yet to see this, and hope he is right.

     

    • paula76344
      paula76344 jacqui77011

      Posted

      I am pleased to hear you emailed the clinic. I also did not suffer any trauma & Initially that put me off the EMDR, but as I said I had nothing to loose. Please do try it and I would be keen to hear how your daughter gets on. If the EMDR works (which I have no doubt it will), she will soon move on to living a normal life. In relation to Disability Living Allowance. I did get this the whole time I suffered from my seizures. I do hope this has been of some help. Paula x
  • jacqui77011
    jacqui77011 paula76344

    Posted

    Thanks so much for all of your feedback.  It really is reassuring that there might actually be light at the end of our very dark tunnel.  As a matter of interest, where about was your therapist?  The person I contacted doesn't deal with children.  I am really keen to give it a go.  I'll wait for my daughters exams to end and then give it a try.  She starts her GCSE's next week.
    • paula76344
      paula76344 jacqui77011

      Posted

      Hi I live in Northern Ireland, so mine was in Belfast but please do try another as I know it really will be life changing for you all. Please let me know how you get on. Thanks
  • jacqui77011
    jacqui77011 paula76344

    Posted

    Hi Paula, thanks so much for this. I am so excited.  I clicked on the link you gave me and read the info on it.  My daughter suffered a surgical trauma when she was 12.  She had a post op infection when she had her appendix out and our nightmare began shortly afterwards.  I have emailed the recommended therapist and he hasn't yet replied but I am going to take a look at the local therapists from your link.  Thank you so, so much for sharing your experience, it may lead to something positive for us....
    • paula76344
      paula76344 jacqui77011

      Posted

      I really hope it does, and please always remember that a trauma for one person, may not be for the next. We all just cope and deal with things differently. I really hope the therapist comes back to you soon!! And I know you're daughter will resume living a great & wonderful life. Take care!!
    • jodie91473
      jodie91473 jacqui77011

      Posted

      Hi Jacqui, very interested to hear how you are getting on with your daughter?  I really hope you have had success with treatment.  
  • jodie91473
    jodie91473 paula76344

    Posted

    Hi Paula, thank you so much for sharing this information.  My daughter too suffers from NEAD and its so distressing, she is 18 years old and has been on and off with NEADs for 5 years.  At the moment she is at her worse having 6 events a day and has been for 6 weeks now, prior to this she had been free of seizures for 2 years.  She also says she hasn't had a traumatic event in her life and has a hard time believing that they are NEADs as my son has epilepsy and I think she still believes that the doctors could be wrong - I don't really care what they are I just want her to live a normal happy life.  What I have read about EMDR is that they try to get you to recall the distressful event, my question is what did they do for you if you didn't have a trauma etc?  thanks very much, also interested to hear how Jacqui is getting on?
    • paula76344
      paula76344 jodie91473

      Posted

      Hi Jodie

      I am so sorry I have not been in touch sooner. I am pleased to say that I am still free from any seizures. I can understand understand your daughters frustration, my older sister does have epilepsy too, and thought then it must be the case for me too. Her seizures are controlled by epileptic medication. Firstly I think the most important thing is to reassure your daughter that you know she has no control over the seizures, as she doesn't. NEAD affects people's life's in the same way, the only difference is the treatment plan. If your daughter says that she has not had a trauma then could well be the case, or it may be something that she never wants to share. When you go into therapy you say to yourself at the beginning and maybe for the first few sessions "I will just not mention that". But eventually you do or at least that happened to me.

      As I mentioned before a trauma to me may not be a trauma for you, it just depends on how it made you feel and its impact. There is also the scenario that one particular trauma did not happen but small things begin to build up & eventually you no longer have the capacity to process anymore. EMDR will take your daughter through all of this at a pace she is happy to go at. During EMDR you do not speak about the trauma out loud or anything that has upset you. You revisit the event in your mind and reprocess it with the aid of eye focus techniques or sound, whichever you are most comfortable with and with what the therapist thinks is working best.

      At this moment just show your daughter unlimited support and ask her to try the therapy (you can keep it quiet just between the two of you.)

      To make it easier for her I would suggest taking her to the appt then go have a coffee and collect her. Don't ask questions ( I know this is hard) and let her make decision to scheduling a second appt.

      i hope this helps, and again I am sorry for the delay.

      Please let me know how she gets on if she goes.

      Good luck X

    • jodie91473
      jodie91473 paula76344

      Posted

      Hi Paula, thanks for your reply. My daughter is doing really well. She has been to EMDR and at present is having one very small seizure a day. First thing in the morning, and she is very happy with her treatment. She listens to a recording every morning that puts her into what she describes as like a daydream. This has helped so much and she has now come to terms with everything. Thank you so so much for posting in this group, I feel like you have helped us out heaps. And really pleased that you are still seizure free smile
    • paula76344
      paula76344 jodie91473

      Posted

      Hi Jodie

      I truly am so happy for you and your daughter and your daughter will reach a point when the seizures stop completely, but we all start with small steps.

      I am so glad to hear that my experience has had a positive effect on someone, as that was the only reason for my post.

      Take care, and I wish you and your daughter a long, healthy & happy future.

      Paula X

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