Can you help me in preparing for appt. in a week at NYU? I’m not sure what the Diagnosis will be or if they will have found one. However, I do know that I will have to bring back up these possibly seizures. My question to you after you read this is how important will it be for them to further test for that and medicate?
Since I had the witnessed possible Grand Mal in the last part of August, I’ve had two Petit Mals seizures witnessed by my mom also. Since July, I’ve had numerous time where I’d wake up and have chewed up the inside of my mouth and have a REAL head-ache, I do not wake up with migraines, they usually form over the course of the day so this is a indicator that something is going on as well. Note: I’m not chewing up my mouth at night as much since they upped the Topmax from 50 to 100 mgs a day. Maybe once a week.
I also am having the possibly Simple Partial Seizures (??). I feel it coming and then my head snaps and my back often does too, and my arms flail and then it’s gone, just like that. This is NOT FUN.
AND, I’ve been having what my mom terms as “absence seizures”… I just totally blank out, and then I come to and I’m standing somewhere frozen staring. I know this isn’t normal because I feel quite bad afterward.
Ok, I’ve noticed these are all affected by the amount of sleep I get, ESPECIALLY the jerky ones. Example: I didn’t get enough sleep last night so today: I probably had about 13 of the jerky things (possible simple partial seizures?) and when I wasn’t feeling pretty bad, I wasn blanking out, or waving my arm around and just slurring my words and saying “aauuuuuaaaa” and not being able to communicate. BAD DAY!! I finally crawled into bed and slept for a while and this seemed to really help. I’ve only had 2 since then this evening.
So….. my questions. I want to go to work and start driving again: basically, I want to be normal. In doing so, how much do we need to test and treat this? Right now, I’m not “work-able” in this state… do you agree? How much of this should I talk about in this appt? I know that we won’t be going back to NYU much after this appt. especially depending on the dx. This is something I would ask about after we found out the diagnosis or lack there of, of course. Soo……
I know that anti-seizure medications are not fun, they have their own set of troubles.
Exactly how important is this?
Now, I’m NOT looking for lecture on how I should not drive. I will behave, Ok?
Did you get over your LP Headache??? Must have, as you are on to another very important topic. I can't answer your questions specifically, but generally.............yes, IMHO, it is important to mention these seizures. Not driving aside, you could fall and hurt yourself during a seizure, or any number of other things. I know you want to hear the Dx first, and I don't blame you. But please at least ask your neuro about these seizures. So glad your headace has gone.
I don't know about american laws as I'm in Australia, but here, in regards to driving and work, you're not allowed to drive a vehicle until you've had no siezures for a minimum of 3 months, usually 6 months, and then it's at the dr's discretion.
I had a seizure ( so far the one and only) in september last year, which is what set me on the path which led me to here.
I was pretty mad when they said I couldn't drive, because I'm a single mum (mom) with an 11yo son and no one to help out. So we had over 3 months ( I think it was 4 before I got the all-clear) of lots of walking, lots of buses, lots of trains, and lots of grovelling to people for lifts to get to places public transport didn't go. It was a pain in the arse but I got fitter!
of course, it was also a bit scary because I was worried I'd have another seizure while walking in the heat lugging groceries etc.
So bascially, I reckon you might want to google your state motor vehicle registry/ licencing office and see what it says legally about driving and seizures. I wouldn't be surprised if the laws there are similar to here - after all, no one wants to be responsible for a person who has seizures causing accidents and possible deaths to anyone.
And no, I don't think you are "workable" at the moment. I was ordered to have 3 months off after mine, and to take it really easy.
Good luck with it love.
Oh, have you had an EEG? I had one and mine showed no epilepsy, so they remain clueless as to what caused mine.
Hey girl! I have no idea what you should do about the seizures...but definitely mention it to your doctor! Have you mentioned this to him before?? I would probably hold off on the driving and working until you feel better. But, that's just 'my' opinion...lol. (and opinions are like arm pits...everyone has one...but some stink..lol... just trying to make you smile today!) Anyway, I'm praying for you. Try to get some more rest and take it easy as you can. Okay. When is your next apt? When do you find out about your LP???
I'm feeling better, the only leftover really from the LP was a worsening of my symptoms- my walk is rougher, my eyes are worse, I'm slurring my words more, and having more of these 'jerky things', and altogether more tired. I think the one thing i can really point to that is new and from the LP is that awful pain in the bottom of my spine- I keep wishing it away.
Any rate, my appt at NYU is on the 6th of Oct. and I will get my results then HOPEFULLY.
I had PT for the first time today and it went ok, I have to go in 3 times a week for a month for gait/balance training and possible fitting for an AFO. They aren't quite on the same page as Dr. Kister so hopefully it will go ok, I have to do excercise at home 5x a day, so that will be FUN. Smile.
And as far as this thread on seizures, yes I mentioned all this to my doc's, and so far haven't been treated, all though I was to be shipped to a hospital seizure unit permanently until I chose to go to NYU to look a the whole picture instead of just this small problem... so when I turned down that "offer" i so far haven't recieved any further treatment and at NYU they are focusing on testing right now....
I did have an EEG by Dr. DWI, but it didn't turn anything up (i was told) but on the results I did see some diagnosis that weren't normal soo.... I don't know what to make of that.
I'm not sure about driving laws, I do know others with epilepsy who drive... i think it differs on your doctor and you have to have a physical every 6 months, but don't quote me on that, ok?
Sunny, my weird little seizures only happen when I already feel like crud. Short on sleep, or did too much that day, and the next day - wham!
I've opted not to take any medication, because I get the seizure thing only when I'm feeling 'seizure-y.' It never takes me by surprise. Sure, they affect my quality of life - but they're directly related to the MS fatigue.
So my advice is that you should be taking an anti-seizure medication. Your seizures are a LOT worse than mine, and you're losing consciousness. Even if you decide that you're not safe to drive, you don't need to be falling out unexpectedly.
Besides, you can't always help being tired. Sometimes it's because you did too much. Sometimes it's just what happens with MS.
After I started taking these samples of Aricept, I started getting my thought processes back. I still feel like crud a lot of the time, but at least I can think clearly. It has really improved my outlook on life. I think you would feel better about things if you could depend on being seizure-free, even if you don't feel good.
I would definitely mention all of this in the appointment. They're there to help you get your life back to a semblance of normality. The more information you give them, the better off you'll be. I would tell them EVERYTHING - they're specialists, so suck all the information out of their brains until they're drained dry.
Oh, BTW - my neuro says that my description of my seizure isn't a simple partial, as they happen only on one side of the body. I'm not sure if he's crazy, or if that's correct. Everything I've read about SPS says nothing about it being on one side or the other.
Thanks, that's great info.... mine aren't restricted to one side of the body usually, only the strange ones when I blank out and start moaning and waving my hand around is it really. The jerky ones both of my arms jerk VERY dramatically, I hit anything or anyone in the way.
I actually do know when the BAD ones are coming, like you I feel bad and usually go and try to lay down quick. But the small ones and the absense ones and the jerky ones are taking me by surprise, although afterwards i can usually say, hmmm, guess I'm too tired today, and I go and try to sleep and it usally helps a LOT.
I will try to talk this over with Dr K at some point during the appt.
Glad your LP headache is gone at least. I was diagnosed with complex partial seizures a few years ago and was put on medication (Topomax and trileptal) . They worked great. Jen, I laughed out loud when you used the term seizure-y - thats EXACTLY how I would describe it to my neuro!! And, yes, you def feel them coming on, and 9 times out of ten, after a seizure, you are exhausted. This is from contracting muscles severly during your seizure.
Sunny, the inside biitng of the cheek and headache sounds more like a teethgrinding process (usually caused by stress affecting us when we sleep) and not seizures. I have this too (right now as a matter of fact) and it is not caused by seizures. THe only way that they can determine if they truly are seizures, is by doing a 24 or 48 hour monitor on you. I had this done, and everytime I had one of those jerky movements you were describing, I was supposed to press the button. Wlel, when I got the results back, it seemed everytime I pressed that button (thinking I was having seizure activity) I actually wasnt having a seizure. And seizire activity that was recorded were times when I hadnt pressed the button!! If you are actully having grand mal seizures, you absoultely have to tell the doctor. Grand mal are very serious and not very common...they will have to be notified about it. Those jeerky movemets you are feeling could be part of ms and not a seizure.
Good luck - hopefully you get the answers youve been waiting so patiently for! You are in my prayers!
Hey there, I do grind my teeth at night.... but this is different.... I chewed my mouth to bits and chewed my lip bloody... and didn't realize it until I wake up and see the blood. Also, that migraine after these bloody mouths is just 'different'. can't describe it better, sorry.
You are right, you do feel them coming, which is why mine often happen when i'm sleeping because when I feel like that i just quick go to bed. The only few times that folks have seen them is when I haven't been able to get to bed fast enough and they happened in the kitchen. (this is, of course, the larger seizures that last a long time) Not the smaller absense ones.
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