Anyone else had seizures as a result of their MS; had one on Thursday last week, first ever, hospital could not find a cause/trigger other than my MS and inability to regulate my core temperature.
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Hi Theresa. Yes, I have seizures. I’m not diagnosed with MS yet although, my consultant seems pretty convinced. I have Tumefactive demyelination and, am also diagnosed as epileptic.
My first seizure was a Tonic clonic that put me to sleep in the hospital for 2 days.
I usually get smaller focal aware seizures (Auras) they’re fairly easy to manage but, a little unpleasant. My partner told me a few days ago that I was shaking a bit at around 3am. I let my MS nurse know. They have now upped my anti seizure medication again and, told me that I’ll be discussed in this week’s Radiology MDT meeting.
my seizures seem to come on if I’ve been pushing through fatigue.
The smaller ones for me start like butterflies in my tummy then rises up through my chest like an anxious feeling. It tingles up my neck and over my scalp. My vision goes out of focus. My palms sweat and, I get a floral smell in my nose.
The Levetiracetam seems to work well mostly but, I’ve learned that there’s no substitute for good rest.
I don’t know it all but, I’ve been learning a bit along the way so, if I can help at all - I think my email address is on my profile and, you’re welcome to give me a shout. Or message on here.
If you’re getting seizures now - it’s time to start looking after yourself more than you maybe thought you had to x
Take care mate - All the best 
Jon.
Thank you Jon, pushing through fatigue is something I think we are all guilty of, I know I am. Have been more thorough with getting enough sleep, rests during the day, being more careful over what I am eating, less junk food for me, and seeing my MS Nurse next week to discuss and get their input.
No driving for me for the foreseeable, but the bus services where I live are pretty good, so very few issues there, although a lot more stuff is going to be ordered for delivery going forward.
Fortunately I can still find a bit of humour in the situation - it has definitely freaked out my work colleagues more than it has me, especially the unfortunate soul who was sitting next to me when it kicked off who rugby tackled me to the floor (note to self, always sit next to the humungous rugby player just in case) and my line manager who is squeamish about the simplest of first aid issues. The fact I was the only company first aider in the office the day it happened, I leave the panic this caused to your imagination. Luckily one of the FM guys is a mountain leader with first aid experience and he took over.
Its all still a bit weird for now - is that sensation/taste/smell an aura or my ms being its usual self?
I’ve updated my medication cards to include the anti-seizure med Lamotrigine to my cocktail of tablets, inhalers and injection for MS. Its way easier to hand over one of these cards when asked what medication I am on than try to recite them all - it has my GP’s details on the reverse along with details of who/what number to call in an emergency.
I’m used to having these cards as I have asthma and when I need hospital intervention and can’t talk much, I have ones with “I am having an Asthma Attack, GP Detail, Medications, Address, Next of Kin contact overleaf” that I can hand to the receptionist at A&E.
I hope your seizures and MS are behaving themselves.
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Hi Theresa.
Thank you
Yes, it’ all seems to be behaving it’s self for now while I try to adjust to it. From what I can tell and, the chats I’ve had with my MS nurse, those strange smells and visual disturbances are part of the auras which, themselves seem to be part of my MS.
I think you’re spot on - we definitely need to have a sense humour about all this. I’m glad that they can laugh about some of my antics in this house. It just seems to make it feel a bit easier x
I do like the sound of those cards. I was given one when I was certified as partially sighted but, it sounds sensible to cover most things
I hope you’re enjoying this nicer weather.
Take care mate
Jon.
I doubt this will tell you anything you don’t already know, but this is Prof G’s take on it.
Multiple sclerosis and seizures - by Gavin Giovannoni
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