Listen now (16 mins) | Seizures and epilepsy (recurrent unprovoked seizures) are relatively common in people with MS. In the MS-Selfie podcast and newsletter I discuss this issue.
In my nearly 40 years with MS, I've had trigeminal neuralgia, treated with carbamazepine, an anti-seizure med. Like many others, I have restless legs syndrome, which you recently discussed and said (I think) there's a form of seizure going on. Do either of these make it more likely I'd have an actual epileptic-type seizure?
I don’t actually know if my experiences were seizures, maybe not. But during my first relapses which affected cognition as well as motor, i would frequently get a momentary sensory spasm/rushing/tightening feeling - it would start from my toes and make me unable to move and rush up my body to my brain and making me feel really spaced out and drunk for only a minute at a time. It was triggered by sudden noise and fear, like a dog barking or a door knocking or one of my children calling out - something sudden and I’d not be able to move! It was like a fight or flight response - but instead it was freeze! It went on for years although became milder over time.
I had 2 what used to be called grand mal seizures just over a year apart. These were 7 and 8 years after DX. They were terrifying - on both occasions I was having a coffee with friends & they actually occurred in the same cafe! I was unconscious & taken to A&E each time. After the 2nd, I started on anti-convulsants & after a tweak, Lamotrigine has worked well. I had Lemtrada a year after the last seizure.
I realise now that I had had absence seizures before DX - I recall going bkank when presenting a case in court. Accompanied by a buzzing/change in hearing.
I now wonder if perimenopause accelerated the tonic clonics but more likely the new disease activity I had & which prompted Lemtrada
Hooray , thank you , information on seizures with MS. I have extensive MS damage in teh Right parietal and prefrontal regions and also some , but less in the left. After several decades of MS - brain only, no physical dysfunction, i started getting weird ' blown fuse' like sensations in head and feeling of falling to the left .....and so on - GP suspected focal parietal seizues but referral to the main city neurologist who without any tests, told me patronisingly - oh its just a variant of normal . Over the next decade or so the episodes changed in nature and increased in the area affected - no use going to doctors after being told twice its ' normal ' ie given the default diagnosis of ' it was all in my head' but I kept a diary of it as it was fascinating seeing how they 'evolved' as they got worse . When I went 'bush ' on an adventure for some months , they got much more frequent and worse - debilitating . Felt like all my neurons were firing at once in a centralised area - and the wrose they got the wider and deeper the area - and the worse the vertigo, the visual, the visceral and the sensory effects.....followed by the after effects of feeling 'out of it , very sleepy etc Once it happened when people around so I was taken to a small town emergency centre and they suspected focal seizures and referred me to my neurologist when I got back home.
Ha ha .... he wouldn't even see me at first even though I had sent him all teh symptoms and details ... and he was kind of dismissive - Eventually got an EEG over three months after they symptoms had diminished to minimal, and as usual it was abnormal ( as has been for many years ) and the wave voltages so small that they could not be fully analysed or something . Anyway verdict was it was unlikely to be seizures - only rationale seemed to be becasue they are so rare ! But interestingly I was being monitored annually for other problems - retinal - and it was perfect timing as my appointment came up after my bout of neural 'events' and they noticed for the first time my visual field on teh left was mildly impaired.... so they startd investigating and monitoring me 6 monthly . The neuro opthalmologists were brilliant and listened to me, understood my descriptions of how my vision ( and other senses ) were impaired and after ruling out everything else suspect that the partial seizures could have caused a bit of damage . Damage affecting visual fields that now after three years is virtually resolved. i have kept good notes on the effects and evolution of the focal seizures as it is so interesting - and also it appears to be fairly rare so it hopefully be of use to someone sometime ; either before or after my donated brain is examined. With the internet and sharing of ideas and expereinces such as this forum more people may find there are others who can describe the same ' what it is like' symptoms . Sorry this is so long and convoluted but its just in case there is someone out there that knows what I am talking about .
Hi Tom, I don’t know whether your symptoms are a seizure, you’d have to ask Prof G! All I can say is that I experienced hundreds of these episodes over years, dozens each day and the moments when it happened, it affected my entire body and cognition in one sweeping sensation, it wasn’t a discreet area involved - if that makes sense. But i too would love to know what it was and whether it was a type of seizure or just another weird MS thing!
Thanks so much for writing about this. I was diagnosed with MS 18 years ago, and 5 years later had my first two seizures, which were thought to be provoked by Rebif (my DMD at the time). I changed to Copaxone and started anti seizure meds but unfortunately went on to have disease progression and further seizures. It has been a very bumpy ride finding the right balance of meds, but I am now excited to say I have been seizure free for 8 years and also have very stable MS disease - having been on Tysabri, Ocrevus and now on Kesimpta! It has been a journey.