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Laura Barnes

Age approximately 13 I had my first seizure. A tonic clonic, in the middle of the school day in front of all my friends. I came back round baffled, scared and more tired than I'd ever been; nothing like this had ever happened before. This first seizure opened the floodgates, and I started having multiple seizures every day. Mostly myoclonic, with occasional absences and tonic clonics, and I vividly remember hearing my parents whisper downstairs, (my mum having grown out of epilepsy herself) "it's probably epilepsy, should we prepare her for it?"

It was epilepsy; Juvenile Myoclonic Epilepsy. I was told I'd probably never grow out of it and that I already needed to start considering whether I'd ever want a child because my medication choices would impact my ability to have children. I asked the doc if there was anything I'd never be able to do, petrified he'd stifle my dreams of being an opera singer there and then: "Well, you don't look like a truck driver to me, anyway!" he chuckled. I took it on the chin, as is the family attitude. Everyone has shit they have to deal with, the negatives of epilepsy pale in significance to the amazing family life I'm so fortunate as to have.

I am now 21 and I still have a few myoclonic seizures most days. I get up earlier so my body has time to adjust to being awake, to prevent breakfast spillages and shower accidents.
Since diagnosis I have: sung at Buckingham Palace twice, sung the soprano solo at the royal wedding of Zara Phillips & Mike Tindall, performed leading roles in sell out shows at the Edinburgh fringe festival and received 4* reviews from magazines, played Fantine in a royal command performance of Les Miserables, received multiple scholarships to study my A levels at Gordonstoun and am just coming to the end of my degree in operatic performance at a music conservatoire where I've earned multiple music prizes. Epilepsy doesn't define me, but it is who I am, and I wouldn't change it or my story.

Laura Barnes
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I would like to understand better the rules of driving and Myoclonic epilepsy? It affects me in my sleep, and if tired on waking but never affected my driving.
Also I was initially on EPILIM and was first diagnosed At 19yrs old, but had symptoms of myoclonus prior to this for a few years. Once diagnosed was relatively well controlled with Myoclonus symptoms only occurring on waking, or sleep and no tonic-clinic seizures. I waited more than 3 yrs to drive when symptoms well controlled. I had to stop Epilim during pregnancy, and managed the JME well, with very few episodes. When I had my son I went back to my GP to restart Epilim, but they advised I didn’t seem to need it.
I was diagnosed also with Transient Osteoporosis (pregnancy related) and fractured my hip whilst still pregnant. I believe this has something to do with the Epilim I had been on for 10 yrs. I still have Osteoporosis at 47yrs.
As a result I have had hip problems and spine fractures. 2 yrs ago I was commenced on Tramadol for pin and Butrans patches and this worked well. Recently my pain to my spine/hip has worsened and found myself requiring 100mgs Tramadol TDS at its worst. 2 weeks ago I was in London with my sister and friends and had had a late night, although did sleep for 7 hrs, had had some alcohol also ( but hadn’t taken any Tramadol on this day) the following morning the Myoclonus was bad and I couldn’t even pick up a drink. Not long after whilst in the hotel room with my sister I had my very first Tonic clinic seizure. I bit my tongue, my sister had helped me to the floor, but tried to put her fingers in my mouth as she saw blood. An ambulance was rung and before I woke up they ambulance crew were with me. I was taken to the university college hospital, and received excellent care. They kept me in 1. Itchy for observation. I had memory loss and severe pain to my spine, chest following the seizure and since had n mri to head and thoracic spine and awaiting results of these. I saw a neurologist on my return from London and he seemed very determined to blame the whole incident on my alcohol intake and lack of sleep. I felt as though it was all my fault. Since this consultation and talking to another specialist for pain, he has suggested it could have occurred due to the Tramadol, and particularly as recently I had been needing the maximum dose?
I now have stopped driving and when I have my MRI results will be contacting DVLA. I found the experience frightening, and the thought of having another is awful. The neurologist didn’t even look into my analgesia? To look at other factors. I have since had to come off the Tramadol following advice of pain specialist as he would never prescribe this in people with an epilepsy history. So my thoughts are I was incorrectly advised to not continue Epilepsy medication by my GP, and also should never have been prescribed Tramadol? I had never had a tonic clonic seizure until recently and a one off episode,

Could this be considered a provoked seizure? And now I have stopped the Tramadol and started Keppra with no further Seizures either Tonic clonic or Myoclonus? Would I still need to wait 1 year before I can drive? It is such a nightmare with my Osteoporosis having to get on a bus currently is agony as they slam the brakes on. Currently my car is just sat in the garage, and I’m going to have to get a bus that will take over an hour to get to work! Nightmare.

Submitted by Alison Wright on

Dear Alison

 

Thank you for your message.

 

The driving regulations can be very confusing. We have our tool to help people find out when they might be able to start driving again.

 

If the tool isn’t suitable for your situation, it would be best to check with your doctor (neurologist or GP). They may be able to say when you will be fit to drive again. If they are not sure they can contact the DVLA medical advisers. Your doctor can get the contact details from the Assessing fitness to drive – a guide for medical professionals’ book. Doctors and other healthcare professionals are welcome to write, fax, email or speak to the medical adviser about individual situations.

 

It’s important you apply for your licence back at the right time. If you do it too soon the DVLA will revoke your licence. This will delay you getting back to driving when you do meet the regulations.

 

Regards

 

Diane

Epilepsy Action Helpline Team

Submitted by Diane - Epileps... on
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