My mom thinks that I had a grand mal seizure the Sat. night. That's a possibility, I woke up a few minutes after that with a roaring head-ache and the need to go to the bathroom. My mom is a nurse, and my dad has epilepsy, so she is very aware of how seizures work.
As I understand it through my studying seizures, they aren't always genetic, as my dad's were started by trauma to the head, but the "suseptibility to have a seizure is genetically linked".
Ok, so... I'm on Topamax for my migraines already. And I do deal with the weird jerking of my whole body sometimes, or the contracting of my hands that my nurse friend also describes as a small seizure.
So, has anyone else suddenly developed seizures? I vaguely remember reading some threads on it.
Should be concerned? Especially since this did come along with that funky eye dilation this past few weeks. Check out the pic. I took in direct light. Weird, huh?
Yeah, I can't say that knowing that I posibly had a seizure makes me feel any more comfortable about being undiagnosed, un-tested an in the hands of an "uncaring Dr. DWI!" For those who don't know, I do have a new neuro appt. in about 4 1/2 months.
Sigh. I hope ya'll are not tired of me asking questions, I feel like I'm on here almost every day with questions and no answers.
Hey girl...back again eh...tee hee! Gotta tease ya when I can ya know! he he
Anyway, I presented with Grand Mal and Petit Mal Seizures back in 1993 when I was first diagnosed but I have been on Tegretol ever since in varying doses and have not had a seizure since probably 1995 or so.
My Grand Mal Seizures were only at night when I was in bed and did not have any during the day. I did not lose control of my bladder or bowel...just bit my tongue horrendously and had the most agonizingly sore muscles and a lot a petechiae on my neck and face in the morning after.
The Petit Mal Seizures were during the day and I would go off into space after having an Aura of thousands of voices all talking at the same time in my head or a strange smell of burnt toast and I usually had the Aura when I was in the shower. (My Mother always said I could never do things normally!)
Were you asleep when the "seizure commenced"? Were you incredibly exhausted afterward?
I also have the myoclonic jerking (sp?) when I get really tired which seems all the time lately but because I am on the Tegretol I don't think they are related to the seizures of the past.
I don't really know that much about seizures other than how horrible I felt the morning after and the lost feeling after a petit mal but I thought I would relate to you what has happened in the past. My seizures always seemed to happen after a particularly stressful situation ended and I was relaxed. The first one was a few days after Christmas...my little dog died on Christmas Eve and then my Mom and Dad went home a few days later and that night I had my first seizure.
I hope if this is a seizure disorder you are dealing with that you are able to get it checked soon. You really shouldn't drive until you know what the heck is going on just in case. I hope you get some answers but you should even let your pcp know the situation because you may need care before you get in to see that new neuro right?
Umm.humm... do you really think I could stay away as long as I had questions and I was near a computer that had internet connection? Never!!! Grin!!!!
Wow, that would make sense. I was pretty stressed this week-end. I felt terrible when I woke up soon after it happened in the middle of the night Sat, migraine head-ache and the need to the run to the bathroom, and all.
And Sunday, I felt just awful after I woke up, totally exhausted. AND, new symptoms and everything. Yuck!
And I evidently was grinding my teeth pretty bad Sat. night, my jaw is all tight and I could tell that morning I I couldn't open it very far.
My mom has already wondered if I haven't had a few petit mal seizures. For example, one time I was standing at the counter and she was sitting across from me watching me make my lunch and then I suddenly stopped talking and just stood there waving my right hand in a small circle (she said) and then she started asking me "are you OK?" and after a few seconds I just snapped out of it, and was like "um... what is going on, and what am I doing?"
Yeah, as I've mentioned before I don't have a PCP due to moving here and then finally finding one only to have his clinic shut down and be bought out this last spring. SO, yeah. And my new PCP that I tried was very uncaring, so I'm back with NO PCP and I really need to find one, it's just one more thing, ya know?
Well... I don't know, this is probably just one more symptom in the saga of the "whatever" I have. And it would be nice to know, as I always say. This just keeping on adding symptoms like this can get old some days.
I tell you what, let's not metion this to anyone around here, I just got "wheels" and am going to get a license and tag on Wednesday and after being "housebound" for several months i want to be back on the road.
I have a feeling that a seizure disorder isn't the whole answer, i've probably got something that includes seizures as a "side effects". Gross, let's not think about it. My mom's best friend and my dad both have epilepsy or seizure disorders so I know what life is like to live with them.
Thanks muchly for posting, I love hearing from ya!
Okay, not to sound too much like a responsible adult, but you need to wait until you're sure you're not going to have another seizure before you get back behind the wheel. Go ahead and get everything you need to be able to drive the vehicle, but you could end up killing yourself or somebody else if you had a seizure on the road.
I've been having simple partial seizures recently. They started about three weeks ago, and they happen only when I was feeling fatigued and symptomatic. Sometimes there would be a trigger, such as flashing light or bright contrasting light. I would get this weird full feeling in my abdomen, and a 'not right' sensation, and the whole thing would build until my back arched and my hands curled up preying-mantis style. It was kinda like a sneeze - once it had happened, I felt better, but it felt like it could happen again. I was aware the whole time, unlike the seizures you've been having.
I'm pretty sure a seizure disorder isn't the answer, either. Epilepsy is caused by damage to certain parts of the brain, and MS damages certain parts of the brain. So MS can give you epilepsy, at least temporarily.
ummm.... that's a "simple partial seizure?" I've been having those just as you describe them, "'not right' sensation, and the whole thing would build until my back arched and my hands curled up preying-mantis style." and my nurse friend has told me adamently that they are seizures and I told her just as adamently that they are not since I am aware during them. For a few weeks after I got out of the hospital I was having them several times a day, but now they are a lot fewer and far-er between.
What's the difference between this and the jerks that I get that shake my whole body? I will say, that those jerks don't usually make my hands contract and they usually start with an electrical feeling in my legs.
Ok, so now what? Exactly how important is this... my MRI was clear, and they aren't bothering my life.. just another piece in the puzzle?
Exactly who needs to know?
I tried to explain it to my neuro twice now and he just brushed me off. So, no.... I'm not trying to tell him again. Sigh. That was however, before that possible grand mal on Sat. night.
I promise, I won't kill anyone by driving un-carefully. I won't have hand-controls for at least another month (due to finances, and a needed class), so IF i possibly try to I drive I'll always have someone with me until then.
I know you'll be responsible! It's just a leetle scary...
Yup, those are simple partial seizures. They're called simple partial because you are aware while they're going on. I can really tell when I'm likely to have them, because I feel so cruddy. So I avoid triggers, like the bright lights and flickering that I mentioned earlier. Not life-threatening, but certainly scary.
I think the jerks are myoclonic jerks, but I can't be sure. I get the electrical feeling in my legs, and then a leg will jerk - usually it's the inner muscle of the thigh firing that makes my leg jerk.
Phew! When are you seeing your new neuro? I know you're a busy girl, but you might start looking for another PCP - it might go faster if you tell them you're having some unresolved health issues, and need symptom management. You're going to need some anti-seizure medication until your brain heals, and your current neuro is more useless than a wet paper towel in a forest fire.
Had another rough night last night, I'm not sure what happened but I woke up feeling like I ran a marathon and I woke up with a head-ache which is unusual and I think I chewed on the right side of my tongue.
I got my Parking Decal at the DMV today, it was a lot easier than the rigamorole they put me through at the neuro's office. He wanted to review my chart before signing the form stating that I needed a disability parking thingie, so it took several days, and I figured that knowing Dr. DWI he would flat-out refuse. WELL, he surprised me... instead of giving me a temp. for six months and checkin the box for needed walking assistance such as a cane... HE CHECKED the box for the permanent decal and the permanent disability due to a neurological condition that was permanent. This guy is so confusing. But, it did make me blink. I mean, he thinks that whatever I've got isn't going away.
Ok, good-by for today. please pray that I feel "better" soon... you know, pull out of this slump...
Hey, Kiddo. I've got to get a little stern here. Yes, it does sound like you have had a couple major seizures. You can't pretend that you didn't have these and hope that you just "pull out of this slump." You can't pretend them away. It sounds like Dr. DWI is coming around somewhat.
Also, despite your delight with your new wheels and your permanent placard, you must notify him of your suspicions that you have had something like two seizures during your sleep. You need an EEG. And, in all maturity, you can NOT drive, until you know what has happened. I realize what horrible news this is, but you cannot take the chance of killing someone or their child (or their whole family) by having a seizure at the wheel.
Your mom thinks you had a seizure. Does she know about what you awakened with this morning? If not, tell her. I'm very serious about this. Have her call the neuro or call yourself.
You're part of my family now. I care intensely about you. Please do this. Seizures can be serious and if they happen in the wrong circumstances they can be devastating. Have this checked out. Jen was trying to say this to you. I am saying it directly. Take care of yourself and those around you.
This is Elizabeth's husband Bob. Elizabeth started to have seizures a few months ago. Unlike yours she is awake and her legs roll inward and outward her back arches and her arms go up in the air and her fingers spread outward. Her neuro said that this is not a usual sign of MS but it can happen depending on where the problem is in your brain.
Please, Please do not drive until you know what is going on. Elizabeth's best friend was in a bad accident 3 years ago. The driver in the car that hit her head on had a seizure. Elizabeth's friend is doing ok now. She was lucky she didn't get killed, she has a teenage daughter.
I wonder how common seizures are in MS? I think a lot of people don't report the simple partial seizure (which is what Elizabeth is having) because it feels so weird. We have so many weird symptoms that the SPS is just another one on the pile.
Basically, a simple partial seizure starts with an awareness that something is wrong. The light might look weird, or everything looks too bright. Sometimes the light feels like it's leaking into my brain!
Then this weird, tight feeling starts in the abdomen. The weird, tight feeling gets worse and worse, and eventually ends with a thing that feels rather like a sneeze of the brain - my arms curl up to my chest, my back arches, and my legs sometimes squeeze together.
A simple partial seizure is also known as an 'aura' because it's a warning that a complex seizure is to come, in people that have that potential. A complex seizure involves a loss of memory, as well as loss of voluntary functions. It is not something to be having while you're driving around! You may look okay (as Sunny did, standing at the kitchen counter, performing the same action over and over) but your brain is stalled in neutral, and has shut down.
Sunny, I'm not going to beat you up about this, but I do want you to know that this is serious - you should not be behind the wheel until this has passed.
I haven't fogot about you... I'm just rushing around here trying to pack.
I PROMISE.... NO DRIVING!!!!
I SO get the point. I PROMISE!!!
Ok, as far as medical care. I'm leaving tomorrow with the family for a vacations mountains. My mom is capable of taking care of me... so I'm not too concerned about flat-out hurting myself and I know I won't hurt anyone else. We'll be back on the 17th.
And as soon as I get back I'm setting up for a PCP to try to get some control over this and maybe get a referral somewhere faster.
I PROMISE!! ok? Many smiles. I'm not upset, I love ya'll. I'm very thankful for your comments, it makes me understand that I can't brush it off or hide it under the rug... we are good at doing in my famile ... the saying goes "it will be better in the morning" and after a while if it still persists then we decide to do something about it.
Ok, I really have to run.... I need to rest and to try get some more work done.
I had a few of those partial simple seizures again today, I'm kinda tired of them... but they are more of a nusiance than anything now that I understand them. I feel "funny" and then my back sorta snaps and my head does too and then my arms jerk and my hands contract and then it's over and I feel better. It all happends very fast. I told my mom what they were and she just "hummed". So....
Well, I'm REALLY going now...I'm very, very tired.
I'll talk to you later, and try to drop a line before a leave and maybe I can find wireless somewhere up there.
One night when I couldn't sleep I googled Melatononin to see if I could take it with MS and all all of my MS drugs... first article that I brought up was one that talked about Melatonin bringing out like symptoms of past flares...that lead to me reading other articles about hormones that produce melatonin... genetic findings articles about MS articles about hrmone levels and hemisferic vs DNA vs blah blah blah... needles to say I didn't sleep that night.
I did read something about the (can't remember the big word that means lots) meth users and MS and then I was thinking about the fact that I worked shift work for 9 years prior to my onset of MS. I somehow jumped to seizures when I was reading your post... my bother also has sporadik (speeled wrong I'm sure)seizures in the night with a health issue and a sleep issue. His are so sleep related and I found so much that seemed to be kissing cousins on MS and MS and...
Anyways... The important thing here is that I explain that I jump alot... that I say hi cause I didn't before...
ok 2nd of all you need to park it till you find out what is going on... Seriously
I will try to do some reading about how common seizures are in MS. I do know that they are no more common than in the general population. What I don't know is if the "onset" of seizures is more common after the appearance of the disease. Most people's seizures develop during adolescence, but MS statistically shows up later.
I will also look to see if there is any knd of seizure that is more "typical" of MS. Or, Jen or someone, do you want to look this up?
Thank Quix, I await your findings.... I was doing some looking myself on the web last night, and it's very intersting, I'd forgotten how indepth seizures are. (I'd done a very legnthy research paper on then about a year ago). They really are amazing.
Ok, got to go, we are leaving now, I'm excited!
good-bye ya'll! I'll be back.... after a fun relaxing vacation!
As for what seizures are most common, this study shows that in the majority of patients, seizures were partial with secondary generalization. Whatever that means. (jets off to Wikipedia real quick...) Evidently a partial seizure involves only part of the brain, and the secondary generalization is when it spreads through the brain. Sounds like my seizures.
It describes Sunny's experience as a complex partial seizure: "Sometimes, the person will lose complete awareness and start making odd or pointless movements (such as picking at clothes) towards the end of the aura, at which point the seizure has progressed to become a complex partial seizure. "
It also says that tonic-clonic (the new word for gran mal) seizures can be predicted by the aura, also known as a simple partial seizure. Sometimes people don't have auras, and go right into the complex partial seizure part. However, if you do get an aura, you can prepare yourself for a seizure, so you won't be surprised.
And avoid triggers! "The seizure threshold can be altered by fatigue, malnutrition, lack of sleep or rest, hypertension, stress, diabetes, the presence of neon or laser flashes or lights, rapid motion or flight, blood sugar imbalances, anxiety and other factors." So stay rested, avoid fatigue, make sure your blood sugar is good, and keep away from the stress! That's what I'm doing.
The difference between simple, partial seizures and complex partial seizures is the loss of awareness. If one becomes unaware of their surroundings, then by definition it is complex.
Generalization means the abnormal electrical activity spreads throughout the brain and all functions are lost - the typical "Gran Mal" seizure.
As for the studies and incidence - there are studies that have found more seizures and those that have found the same. I'll recheck the literature. My "Handbook..." states no increase. And it is the most heavily referenced source I have ever seen.
my best advice is to get off the topamax because it sure does give a person strange side effects. i was previously on it for settling headaches down and it worked for a while but i seemed to get immune to it. it also gave me little seizures and made me lose weight like crazy. my neurologist has me on cyproheptadine and it seems to be working, but again, i feel like i'm becoming immune to it.
the point is to look into some other medication and i hope everything works out for you (:
to all and to bibigirl12_10, this is an old post from 2008... I just wante to clear this up ... I am working with a good neuro currently and reading this post was like stepping back into time and space...
I remember how frightened I was then. Not that I still am not frightned now by my seizures as they do disrupt a person life... but then i would cry after them in sheer terror becuase I had no one to turn to except my family and this forum and I had no idea what was going on with me and with no diagnosis it was just a big huge confusing mess.
I have been diagnosed with partial complex seizures (yeah, I did get a small diagnosis, and that was a triumph I guess I could say) and i am being treated with a combination of things that include a high dose of Topamax and a good nights rest. Grin!
As you prolly know, every ones body is so different, it is best to find a doctor that suits you and follow his advice to the "T". Smiles
i had my first seizure in 1992, after i lost my baby. it happened when i was sleeping. my next seizure happened in 1998 on the back of a motorcycle. i wasn't so stressed out at that time. then i was diagnosed with ms on 2003. the last seizure i had was in 2006. all were grand mal. i have some weird feelings in my hands and arms and other strange things going on with my body but i don't know if it's from my ms or the seizures. i am taking rebif for my ms and lamictal for the seizures. i still drive but there are times when i have feelings like i did before i had the seizures. it's really scary. but until they find a cure for both, it's something i have to live with. i am still quite active, and i enjoy life as much as i can. so good luck with everything and keep your chin up!!!!!!!! karen
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