Seizures

[Shashi]

I seem to be having some kind of simple partial seizure. They happen as I'm dozing off. It's not the myoclonic jerk that most people have where you're dozing off where you jerk really hard (and usually wake yourself back up.) Instead, I'll start having very fast tremors which are a lot worse on the right side and I'll stiffen up for about 20-30 seconds. I know these are occurring, but there's nothing I can do to stop them when they happen. I lay down to take a nap this afternoon, and this happened at least five times.

I had something similar happen when I had my last bad flare up of whatever this is last October. Those occurrences were accompanied by the smell of woodsmoke for the entire two weeks I was having them. This time, I've only had the woodsmoke smell a couple of times for just a few hours.

I'm also having episodes where I'll be nice and drowsy and just about to drift off to sleep and suddenly, just like someone pushed a button, my brain will be wide awake again. This will happen five to ten times before I can finally go to sleep, and if I get woken up during the night, it takes me up to an hour to fall asleep again. I don't know if this is related to the other "seizures", but it's been occurring for about the same two to three week time period. And it's exhausting!

Does anyone here have anything like this? What do you take for it? Do you think the lesions I have in my temporal lobe could be responsible? Should I call my neurologist (who never did call me back about that question I had regarding my MRI.) These episodes stopped before and I guess they're not hurting anything. Maybe I should just ride it out.

Thanks and hugs,

Lisa

PS: I've also been feeling rather depressed lately, which is very unusual for me! Could that be part of this too?

[TNEECGIRL]

yes, I would definitely contact dr., since it's the weekend maybe even go to the ER.
I would let them keep me over night for observation.
having a sleep study might be something to look at also.
praying for you, Linda

[mjan]

OK your neuro CAN do an EEG but often they are normal. So you need to see an epileptologist who will want to do a hospital video EEG. They will not only see any abnormalities on EEG they will SEE on the video recording any signs you are experiencing. You also push a button which marks on EEG exactly WHEN so the neuro can look specifically at the tape.

I too have temporal lobe lesions but TLE was ruled out.
Temporal lobe epilepsy. However, my seizure signs are still happening and being monitored. You dont want to be on seizure meds if you dont have seizures..BUT you do want to be on them if you do.

Call an epileptologist ok hon?

Jan

[mjan]

I just read one of your responses about dementia.
You mentioned that you were concerned because you heard the voice of your brother who was so far away.

Well with the seizure-like signs you have been having.. hearing voices, dejavu, jamais vu, motor tremors, smells, all are signs of simple partial seizures..but.. remember once I had my video EEG the epileptolgogist ruled out epilepsy and agreed that it was probably due to MS.
Finally taking me off the anti-seizure med.

Hearing a voice in my kitchen only happened 1x. The smells are infrequent but in places you would NOT notice any smell: in bed, exercising. I still get goosebumps, also a sign. Its not a big deal for me.

And yes I used to get motor tremors. I DO get tremors nearly every time I lay down about to fall asleep or when first trying to wake up. ITs through out my body but ONLY when I am on my side. hmm..

Hope this helps..but yes you should see an Epileptologist. My neuro had already diagnosed me with seizures and I had a horrible time on the med he first placed me on. Turns out it was more related to MS.

I swear, you are probably popping out more lesions..hopefully they will show up soon.

Warmly, Jan

[Shashi]

Thanks Linda and Jan. I'm going to call my neurologist tomorrow. Hopefully I'll get an answer this time. (Never did hear back about my questions regarding my MRI.)

[re.becca]

Shashi, I don't post here very often, but the seizures you're describing sound very much like paroxysmal symptoms of MS to me. I had a terrible bout of them once, several years ago. The neurologist I eventually saw at the Mayo Clinic in Jacksonville diagnosed my mini-seizures (I never lost consciousness) as paroxysmal dystonia, or tonic spasms, or "spinal cord seizures," as she called them. She prescribed Tegretol, which was a lifesaver, as my local neuro just kept giving me more baclofen, which was doing nothing. I went from 20-30 tonic spasms a day to none. It was an unbelievable relief. Google "paroxysmal symptoms of MS" and read the first article that comes up, from United Spinal. It's a great resource.

Rebecca

[Edge Of Ruin]

My Seizures

It's strange but my seizures occur when I'm just drifting off to sleep or when I am asleep in that non-dreaming part of sleep they call non-REM. They don't hurt but they wake me up and it sometimes takes an hour to get back to sleep. The worst seizures were like an earthquake and then a blasting hissing in the front of my brain and vibrations sweeping across the front of my brain causing my eardrums to drum in sync, starting at the same time and ending at the same time.
The mild seizures are just like Pssss! Pssss! Pssss! in my forebrain and my forebrain is like it's quivering. As long as I am awake I don't have seizures. I only have seizures while asleep or in that twilight time of just drifting off. I was shocked when my doctor told me he did not know why this was. But, I'm taking anti-seizure medication. The seizures last only 10 seconds and I've only had one seizure in the past month, and that's when I forgot to take a dose.
Surfer Ed

[maximumlite]

Shashi
I thought about you when I read this article about seizures and MS. Kind of sounded like you wrote it, I don't know if you have read this or not, if not it could be helpfull for you.

{{URL}}http://ms.about.com/od/signssymptom{{URL}}

[chalknpens]

I've had one definite, secondary seizure following a syncopal episode (fainting immediately after my nightly injection, seized when I asked my husband to sit me up ... bad choice.)

I'd had one years before that just involved shaking and chills (during a very stressful event.)

I have had the sense of smelling woodsmoke for a week or two every now and then, but never connected that to seizure activity. I have lost my real sense of smell in recent years, but occasionally have this fake sense.

Goosebumps I have often, but keep the house temp cool, as I have no tolerance for temps above 70 ... quickly affects me with blurred vision and dizziness when it gets too warm.

My former neuro said "not due to ms" to all of these ...

Interesting that others here connect that to seizure activity. I have a new neuro now, and will ask her about it.

[Shashi]

Shashi
I thought about you when I read this article about seizures and MS. Kind of sounded like you wrote it, I don't know if you have read this or not, if not it could be helpfull for you.

{{URL}}http://ms.about.com/od/signssymptom{{URL}}

Thanks maximumlite. I'll check out the article link.

Last night, I woke up for a brief moment and suddenly it was like someone lit a match right under my nose. I smelled the strongest smell of smoke, and then, like a flash, it was gone!

A couple of days ago, I smelled a very strong smell of a flowery perfume. It was so strong that it smelt like someone had just sprayed me with it. It lasted for several minutes before just disappearing like it had never been.

I don't know if this stuff is seizure related, I just know it's weird!

[mjan]

Ok this is all new, with accumulative symptoms and signs so I can appreciate how confusing and alarming you feel.

You need the EEG, BUT probably more than ONE. I can almost guarantee that they will want a video EEG. They do 3 day ones at home, and you need to be in front of camera during the times you normally experience these signs. BUT the one in the hospital are more accurate and you have RNs also viewing the camera to help you. Also the epileptologist comes to see you every day.

Therefore, you need an epileptologist for certain. And YES they will set up pmt plans after you get the bill.
If you have an out of pocket limit then it starts to pay 100%, keep that in mind.

I would still be dx with simple and complex partials if NOT seeing an epileptologist AND on lots of meds. I was diagnosed WRONGLY by my reg neuro.

My signs started at NIGHT waking me up with these terrible tremors. I thought it was my husband having his nocturnal grand mal szs. NOT. it was ME!!

Now, I do not get those violent shaking nocturnal signs but I nearly ALWAYS get tremors when I lay down but they are through out body now, not only in my skull. They are minor. I do not notice any more cognitive fog afterwards or other after effects. My neuro psych eval ruled out any part of brain that a "focus" may be coming from as well.

Get an epitologist who is familiar with MS ( mine treats both). AND get on pmt plan.

Good luck hon~

Jan

[Shashi]

Jan, I haven't been able to find an epileptologist in this area that takes my insurance. I'll keep looking though.

I've had episodes too where it feels like my brain is shaking inside my skull. I know that it isn't, but that's how it feels. I've also had times that my eyes seem to be jumping around too. And my hands, arms, legs, etc. shake at various intensities most of the time, with or without seizures. I feel like that song, "Jump Around!" I guess I just have a whole lot of shaking going on! LOL!

My boss just told me she wants me to go get certified in phlebotomy because we may start offering that certification at the school where I teach. Um, yeah. I can see that going over like a lead balloon! I'd probably be aiming for someone's arm and poke them in the eye with the needle!

I've got to get answers and soon!

[mjan]

If you cannot find an epileptologist ASK your insurance to find one. Often they will contract with docs outside your insurance, but make sure they will pay as IN network.
And when you meet this doc ask what they know about MS type seizures.

I no longer shake all over, but still have those internal tremors often. Yes once I did NOT sit up right away while having one of those severe shaking head tremors and my vision was shaking as well.

Now I am so used to feeling the internal tremors which used to be only on my left side; now its either side. As I told my epi doc, I do not feel odd, confused or post ictal even after smelling those typical odors. I also get waves of goosebumps.

But its good for you to get epilepsy ruled in/out. And maybe now you'll get those MSee type lesions to pop OUT and get your frickin diagnosis.

Best to you my friend~ Jan