Information about non epileptic seizures and Non Epileptic Attack Disorder.

Clare’s Story

By on 24 March 2015 in Stories

check it out I was diagnosed in Feb 2014 with Guigang Somitisation Disorder and Non Epileptic Attack Disorder. This became apparent when I started with severe lock down symptoms where my neck would spasm and my whole body would stop working and the ultimate attack was in August 2013 when I had such a bad attack, I lost the use of my whole left side.

The hospital prescribed me a drug called gabepentin for nerve damage and another drug, clonazepam, to help me sleep at night. It took six months to get my the use of my left side back. This was with occupational therapy and hydrotherapy treatments and the drug gabepentine. They had to keep increasing this drug to help the nerve damage which was causing pins and needles.

I was finally diagnosed at a specialist neurological hospital and I was shocked by the diagonosis and still am to be fair. The somitisation seems a very rare disorder and as yet I haven’t found anyone else with this. Since they increased the gabepentine to 2700 mg, the lock down symptoms stopped but seizures started of all different kinds; drunk ones, sleepy ones, rigid ones and rare times where you feel like your body is leaving you… very scary.

In Dec 2014, they admitted me into the neurological centre for some rehabilitation, as I was really struggling mentally and physically at home. After ten days of intense talking therapy, they have now decided to take me off the gabepentin and to give me diazepam to use if I have a seizure.

I have in three months now got down to 1200mg which has been hard going. However with the help of doctors, carers and my partner giving up his full time job to be with me, it is getting easier. However, the seizures still come.

I know that the severe abuse and trauma I have suffered has caused these awful conditions and I also have a benign tumour in my c7 disc which gives me a lot of pain but they are unable to operate due to the potential of me ending up in a wheelchair permanently.

I am awaiting further talking therapy but have been advised this can take six months but I do have input from mental health, from a charity helping me with my children who do not live with me, and a very caring partner.

I have set up a Facebook group called Elsdorf Somitisation Disorder as I really want to find like-minded people but as yet I have had no success, but I will be delving deeper to see what I can research.

Clare, Dorset


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