Free of seizures for 18 months after 15 years!!

Brain and nerves
1

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

2

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

3

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

4

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.

 

5

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

6

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.

7

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

8

Thanks Paula, will do.  The therapist I contacted recommended another person.  I have emailed him and am waiting for a response.

9

Great, I have also attached a link below, which lists all the accredited therapists who provide EMDR just incase!! http://www.emdrassociation.org.uk/home/index.htm

10

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....

11

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!!

12

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?

13

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

14

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.

15

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. 

16

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

17

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

18

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

19

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!!!!! 

20

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