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Alison Wright

I was first diagnosed with JME aged 19yrs, although had had it for a while beforehand, mostly occurring in the morning - eating my cereal could be messy, and my brother and sister used to find it funny!

I was started on Eplim following EEG and this seemed to control it very well. I didn’t drive for another 4-5 yrs. I left home and studied as a registered nurse, and relocated to Yorkshire where I met and married my husband. I was the only member of my family with epilepsy. I stopped my Epilim during pregnancy and controlled the JME without any medication, ensuring I slept well etc.

I didn’t have a straightforward pregnancy as in the 3rd trimester I started struggling to weightbear as my right hip was painful- long story short I had Osteoporosis so bad I had a fracture in my hip. Despite being in hospital the consultants were not aware, and blaming my poor mobility on symphysis pubis syndrome. 5 days after having my son early I had an X-ray which confirmed a fractured neck and femur, and was left for over 2 weeks was necrotic. Following a failed attempt at pinning the hip, I went to have a hip replacement at 29yrs old. My son needed to be up in intensive care as premature, but recovered well with no lasting effects. I went on to fracture my spine in several places when picking my baby up frequently, and advised to stop doing this!

I wasn’t put back on Epilim or any other Epilepsy medication as told I would be okay as I seemed to manage without it. I continue to have Osteoprosis and although they have said it is Transient osteoporosis linked to pregnancy, I believe it could have a link to the Epilim. I asked on a few occasions about Epilepsy medication, but was told no, manage without. Roll on 17 yrs, I have recently been struggling with back pain, and hip pain on both sides, and also required a hip revision surgery as my previous hip replacement had eroded holes in my pelvis and was loose.

Since then, 2017, my back can get pretty bad, and I was started on Tramadol and Butrans patches to control the pain, both being strong opioid analgesia. Recently I was needing maximum dose of Tramadol as pain bad, and whilst in London on a weekend with friends and my sister had my first Tonic Clonic seizure in the hotel room prior to going down for breakfast. I have been told it was at least 2 minutes and I'd gone from a myoclonus episode straight into a full seizure. My sister helped me to the floor and rang an ambulance, and they crew were present before I had even come round. I woke feeling anxious and no idea where I was or why I had. Load of people looking over me and talking to me, telling me I had a seizure. As I also have osteoporosis in my spine they were concerned about the pain I had in my back following the seizure, and I had memory loss. I was taken to hospital via ambulance, and received excellent care at the University college hospital. I had a full neurological assessment and cognitive testing, and spine xray, and kept in overnight to help control the pain and for observation.

Since discharge which was now nearing 3 weeks ago, I still have short term memory loss. I have been to see a neurologist who blamed the seizure on my late night and alcohol intake, and requested an mri, which I had and am now awaiting results of. I hadn’t been aware when I saw the neurologist regarding the Tramadol risk and therefore hadn’t brought it up. However I have since seen a pain specialist who said Tramadol usage with history of epilepsy isn’t advised, and he never prescribed to people with a history of seizures. I have since been advised to wean myself off the ‘Tramadol and Butrans, and switch to TENS/cocodol and ibuprofen if tolerated. I have also started Keppra 250mgs bd and increasing up. Since starting the Keppra I’ve have no further episodes of Yo Clonus or Tonic-Clonic thankfully.

I have had to take some time off work as an oncology nurse specialist as I’ve had severe pain in my spine and still awaiting results of the MRI, and still have a degree of memory loss. On top of this I have stopped driving and would like to know where I stand. I’ve been told by my GP they will sit and complete the DVLA form with me but could lose licence for up to a year, and can reapply in 6 months. I am waiting for my brain mri result prior to completing forms for DVLA but of course not driving now. I live in a fairly remote area and buses are few and far between.

My question is could this be provoked seizure owing to the Tramadol? And if so does this have any bearing on my licence as now have stopped this medication, and have had no further seizures? This has left me shocked and I feel as though it could’ve been prevented if I had never been told I didn’t need Epilepsy medication, or prescribed Tramadol that increases risks of seizures in people with a history? I feel disappointed and it is going to have a massive impact on my ability to get to work on public transport from where I live, and the Ostoeporosis to my spine causes pain- as buses are commonly jolly and seem to slam there brakes on frequently! I don’t know how I will cope.

Alison Wright
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