Multiple Sclerosis

[saadbell]

Was dx with MS about 17 years and was in remission until I had this weird staring spells which now I know are absence seizures; they progressed where I would not remember what I was doing. I get up from bed, go to the kitchen mumble something to my mom and go right back to bed, than get up again and have no idea that I had gotten up before. Also have bitten my tongue which was not at all fun. I am on gabapentin and vimpat, I go for about 4 months sometimes less and have seizures again. This last weekend was a weekend from hell, I would have these blackout spells that is what I call them and would come too and my mom said I just again mumble and do strange things like brushing my teeth at the kitchen sink, even made a plate of food only to throw it all out, again I have no memory of doing any of this. Has anyone done strange things only to come to and not have any memory of doing any of these things, my mom also said I smack my lips which I do know is normal with absence seizures. I feel so sick after this, is this normal? Any information or personal experience would be welcomed.

[CQ:)]

Hi Saddbell,

I wonder if you could be having partial seizures.

I have both simple & complex partial seizures, I usually have an aura (warning seizure) which is in the form of a weird dream then just after the aura comes I don't remember anything until after I come out of the seizure.

When I have a partial seizure I usually either stare into space, not make sense when I speak or will do some odd things. The only way I know what happens during a seizure is if I have someone witness it or if I'm on my own I try to take note if anything is different eg - I used to often take partial seizures while walking & sometimes after I came out of the seizure I would be in a totally different street but not remember when I got there.

This is just 1 example of a partial seizure that I had a few years ago - I was at my parents place & we were having bowl of ice cream for dessert. I remembered having the aura then getting up to go to the toilet & the next thing I remembered was being in the kitchen rinsing out my bowl. My parents had to fill in the blank & had told me that they noticed I had headed of to the toilet then when I came back i sat down, picked up my spoon & my hand froze in mid air & I was staring in space. My Mum took my spoon of me & not long after that I picked up my bowl & drank the ice cream out of the bowl then got up to put my bowl in the kitchen sink.

I know it is common to bite your tongue during a seizure but I haven't done that myself so all I can do is imagine it would be very painful.
It can be common to be either tired, feel little nauseaus or have a headache after you have a seizure. I know with some of my complex partial seizures I will feel really tired & have bad headache & if I was at home I would go have a nap.

Have you been using a seizure diary to keep track of any of these seizures & blackout spells you have so you can tell your dr?

[saadbell]

First off thank you so much for replying and sharing with me what your seizures are like. You mention auras, I too have those, but now they don’t come anymore before my seizures, at least I don’t think I have any, but now after a bad weekend of seizures I have auras all the time without having seizures, it feels like I am on the edge of having a seizure but I don’t. I was on keppra but neurologist and my other doctors say I am bipolar and keppra makes it worst. I can’t believe they say I am bipolar now, this is from my brain lesions, and the fun never ends. Lol I hope you never have to experience of the tongue biting, again my mom saw this, I again went to bed and woke up with blood on my pillow, not knowing what happened. In order for me to drive again I have to be seizure free for two years, at this point I can’t go even for 4 months, makes me mad. They tried me on diltan which I was toxic, at one point my levels were 44, and normal is between 10-20, never want to go though that ever again. Can you drive? One other question am I now consider to have epilepsy? This has been a wild ride and not a fun one. Hope you are seizure free and I will love the one day that I don’t have to worry about it.

[CQ:)]

Hi Saadbell,

It is always tough dealing with any medical condition or disability but when you have more then one medical condition it can be a lot harder.

Auras are the seizures that I would have the most. I nearly always had an aura, sometimes it would be followed by a partial but other times it would just be the aura.

I had left front temporal lobe surgery in March last year after trying 5 different medications, none of which helped control my seizures. Since the surgery I haven't had any seizures at all so I am almost 11 months seizure free.

I've never had an interest in getting my licence so never learnt to drive.
I would be able to think about getting a learners permit in March when I reach my 12 month post surgery anniversary as I haven't had any seizures since the surgery but I am still not interested in driving. I live in a fairly central area so I walk to most places but I am able to get buses to most of the places which are too hard to get to by foot & have great parents & friends who are always happy to drive me somewhere aswell.

I hope your seizures do get under control.

[saadbell]

I am wondering if that front temporal lobe surgery would work for me, but since MS is uncurable that they won't let me have that. So happy for you that you are seizure free, that rocks.