How common is it for perimenopause to cause seizures? Has anyone else had seizures or seizure-like episodes that manifested during peri?

I'm at that age (45) and started seriously missing periods this year which coincides with the onset of the sleep events and other neuro symptoms.

I've been having what I call "wake-n-shakes". While they sometimes vary as to body part involved, the experience is fairly basic same each time. I'll be sound asleep. Suddenly I'll wake up and something will start shaking. Usually just my right hand. Sometimes it'll start with my jaw and then move to my hand. I've had one full-body episode of this, starting with my jaw and then moving to all 4 limbs. I'm well aware of what's happening when it's happening. And then I fall asleep right away again. This can happen only once a night but has happened as many as 3-4+ times a night.

More recently (past few weeks), I've starting have nights where I don't know if I'm having multiple episodes or dreaming that I'm having multiple episodes. These are accompanied by strange imagery and a feeling of foreboding. And then the shaking starts.

These seem to happen more often when I'm sleep deprived, but it apparently doesn't take much deprivation to trigger them. For example, I can miss one hour's sleep and they'll happen numerous times the next night. After a night of these, I usually wake up extremely tired the next day, somewhat disoriented for most of the day, and headachy.

CT scans (w/o contrast) have been normal. MRI showed a small nonspecific gliosis the radiologist said was most likely nonsymptomatic. EEG results were normal in spite of tremoring in my jaw during the hyperventilation segment. Even the sleep study came back normal in spite of having several episodes during the study. The only abnormal test result to come back was the MSLT which showed moderate excessive daytime somnulence. Whoopdeedoo. I knew that already. Bright side: no narcolepsy.

I asked my neuro about the normal results and he said I was most likely having 'sleep paroxysms', they were sometimes difficult to detect, and refused to go further into detail. Wouldn't even explain what a sleep paroxysm is when asked directly. I can't find anything on the term online. He rx'd Provigil for the daytime sleepiness and said if the episodes continue he'll refer me to a sleep specialist. I just started the Provigil this week, so I have no idea what to expect. I have an appt with another neuro in late January.

Anyhoo, that's probably more info than you wanted. I'm currently trying to hunt down a decent gyn in my area to help deal with the peri. My last gyn was an ol' f**t with a god complex who thought, since I had a vagina, my brain didn't work.

Just trying to find someone else who's been through something similar. Thanks!

Hi Confuzzled: I have epilepsy but have never experienced episodes like this. It definitely sounds neurological. I've been through the gamut with neurologists...I've had good ones, bad ones, and one neuro-psychiatrist who is so incompetent and dangerous I wrote a letter about him to the board of Meidical Quality Assurance. He is still practicing.

The brain is poorly understood. Half the time these guys are guessing, and hoping they are right. They don't really understand the mechanisim of most psychotropic drugs, but it doesn't stop them from prescribing them. I don't mean to sound cynical, but I speak from having 1) been married for fifteen years to a doctor 2) working in the health insurance field and having to deal with hundred of patients and their diagnosis...

Having said that, let me give you my best opinion. I think you need to follow through vigorously with more than one neurologist. Ideally, you should be seen at a major teaching hospital, like the ones they have in big cities (are you near New York, Connecticut, or Boston?) Make them do several EEG's one, overnight (you may have already done this) and especially with nasopharangeal leads (it's pretty gross; if you haven't done this, ask me and I"ll tell you the unvarnished truth). Hormonal changes, like the ones we go through in peri and meno, can always exacerbate an existing condition. Who know what lowers your seizure threshold. For some people, lack of sleep, drugs, alcohol, even certain smells or a song can bring on a seizure. Like I said, the brain is tricky, and when the neruons start misfiring, all kinds of effects can follow.

Don't assume that one doctor knows all the answers...seek a second, or even third opinion. Good luck...

Robin, thanks so much!

Oh, I agree with you about docs. That's why they call it "practicing" medicine. Just a tad cynical myself.

The neuro I'm seeing in Jan is an associate professor at the University of Penn. She's supposed to be pretty good and apparently does one heckuva differential. She was referred by my current neuro who doesn't want to deal with sorting out my mess.

Hoping she'll at least give me half a clue (with any luck she'll have one herself). I've been second guessing myself about the appt and wondering if I shouldn't cancel it and see someone else who specializes in this sort of thing. The problem is who and what kind of specialist? On top of that, once I find someone, will need to get a referral to them from my PCP (our insurance is changing to an HMO in Jan - everything needs a referral).

I've read about the nasopharangeal thingies. Ummm.....ew. However, if it means finally getting an answer (not to mention treatment) for this, I'm game for just about anything (insurance willing).

I think a large part of my anxiety about this whole thing is the large period of time going untreated between dr's appts. My current neruo won't dx me, let alone prescribe anything. So I'm stuck having these episodes until at least late Jan when I see the other neuro. Limbo isn't a fun place.

Confuzzled: I understand. Do you know any nurses? If so, ask a couple who is the best neurologist in your state.

In terms of your worry about the time you have to wait; I have a few suggestions. Do everything you can to keep your seizure threshhold as high as possible.

1. No alcohol. I mean NONE. Every drink you take increases your chance of a seizure.

2. Get enough sleep...really, really pamper yourself here. No all-nighters. Sleep deprivation is one of the ways that doctors induce a seizure in overnight studies, so make sure you stay well rested.

3. Get enough to eat and make sure you're getting all your vitamins...this is absolutely NOT the time to go on a diet. Eat a well balanced meal, and make sure your blood sugar is even-keel; eat six small meals a day instead of 3 big ones. Keep the simple carbs to a minimum (white flour, sugar, pasta, rice, potatoes)...a steady trickle of protein all day is what your body needs, along with lot of non-starchy vegetables.

4. Water, water, water. Dehyrdation is a big danger when you have a seizure disorder. I'm not saying to go crazy, but dry to stay well hydrated.

5. No strobe lights. Like the kind in nightclubs. They can immediately freak your brain out and cause a seizure. Don't start at a blinking light either.

6. This next one is going to sound a little crazy, but I'm throwing everything I know out there, and hoping some of it will help. Try to avoid looking at anything with repetitive spatial motion. Example: Windshield wipers going back and forth, back and forth. I was on a bus once and it was raining..and the woman I was sitting next to went into a full blown grand mal seizure. Turns out she had been watching the windshield wipers on the bus window. My doctor told me that if the part of your brain that process spatial relations has a focal lesion, (this is exactly the case with me) it can bring on seizure activity.

7. Most people get an 'aura' of some kind when they have epilepsy. Try being very tuned into your body. If something makes you feel 'weird' or "spacey', stop it, if possible. I find, for example, that I cannot do a french braid on the back of my head. Sounds strange, right..but think about it---it's spatial and requires my brain to process things differently than if I were just brushing my hair straight down.

A little more on the strobe light thing: Avoid rooms with fluorescent lighting...these lights actually flicker, but it's so fast you can't see it; but your brain does. Ditto for computer time and television. Keep it to a minimum.

Basically, the goal here is for you to keep your brain from becoming stimulated in areas that may be causing misfiring. It's such an interesting field...my daughter's godmother is a chiropractor, and when she was in medical school, one of her classmates had a seizure disorder that doctors found was triggered by any sort of stimulation to a particular area on his left knee. Literally, if anything or anyone touched his knee in a certain spot, he would have a grand mal seizure. He walked around with this lucite-type thingie boxed around his knee. It was fascinating.

You might remember about 20 years ago, there was a guy somewhere who would have a seizure every time he heard a certain woman's voice (it was a celebrity who hosted some sort of news-type show on tv.) Seinfeld even did a parody of it...Kramer would fall down and seize whenever "Entertainment Tonight" came on.

Hope this helps. Keep me posted...you've got me very curious now!

I know a couple of nurses. One's even married to an ER doc. Will give her a call and see if she can give me any names.

Thanks for the tips! I'm already doing some of those, although there's probably room for improvement. Interesting you mention the computer and tv. I've noticed my microtremors are much more pronounced when sitting in front of either, especially in my jaw. I've also noticed that some graphics on either will make me feel funny (strange, not haha). I find this particularly interesting since I didn't have a reaction to the strobes during the EEG. I think it's moving colors, not flashing lights that does it.

I've only been giving the connection between peri and these episodes some serious thought for the past few days. Didn't even make the connection until a couple of days ago. Since then, I've gone back over my medical history and come up with a few things that might be pertinent to take to the dr's appt.

Back when I was in my late teens and early 20s, I'd experience what one dr later called "pre-migraine episodes". These episodes started with the feeling of water in my ear. That was my aura or "tell". I'd have to find a place to sit down... and quick! Then followed a minute or so of complete body weakness and inability to speak. I was perfectly aware, just couldn't move. Afterwards always felt tired.

I didn't think too much of these at the time. To be honest, I was really casual about my health back then and ignored things that probably should have been followed up on. The above-mentioned doc didn't suggest doing any follow up and we both pretty much pretended it didn't exist.

Then, 3 days following the birth of my son, I started with full-blown daily migraines. 3 months straight of full-blown daily migraines. Finally dragged my carcass to a neuro (referred by my ob/gyn). Normal EEG, no other testing. Diagnosed with migraines, handed a script for Midrin (which did absolutely nothing for me), and off I went.

For the next 16 years, I dealt with the migraines largely by taking large doses of excedrin and lying on on the sofa for up to 3 days at a time. These always came just before my monthly cycle. I'd also get them if I'd been overly tired, sleep too much, had more than 2 drinks in one night, etc. I could even expect one every Saturday, when I was trying to just relax at home. At one point, I was getting these for about half out of of every month.

And it wasn't just pain and sensitivity to light/sound. I'd occasionally get visual auras and olfactory hallucinations. I'd be nauseous and have GI purging from both ends. ***TMI ALERT*** I'd also have gastroperesis during these. When I vomited, I'd see ghosts of meals past, sometimes ingested as much as 18 hours prior (lunch the day before).

And now a possible connection between peri and the noctural events. Pattern? I don't really know.

I'm coming up with far too many questions and (probably) driving myself nuts.

Thanks again for all your help! Will definitely keep you posted.

Have a call into the neuro. Ever-so-slightly freaked out right now.

I think I had my first non-sleep-related seizure event last night. Was sitting watching tv around 8pm-ish when I suddenly was overwhelmed with the smell of burning oil. I've had olfactory hallucinations before but nothing like this. It was as if I was filled with the smell. Then I had this really strange feeling of pressure in my face/head. My body went all stiff for a few seconds. I didn't move; it was like I was locked in place. And then it was over. All in all, maybe lasted for 5 seconds total, if that. I think.

I'm not sure I remember all of it. That's what bothers me most of all about this one. Well, that and it didn't happen around sleep.

I did notice the jaw microtremors were back afterwards and continued for the rest of the night. Hrm. Still have it a little bit this morning, but it's not too bad. I tend to get these during my daytime "odd" episodes but they usually don't last for very long. I also felt really chilled afterwards too. Related or just nerves?

With any luck, the neuro will finally do someting about these. Hoping he'll order another MRI too.

Just venting here. Don't mind me.

Was your EEG one of those sleep deprived ones? I had problems at night for awhile and my neuro ordered a sleep deprived EEG (I don't know if that's what you really call them, but I was supposed to stay awake all night, then reported for the EEG first thing in the AM.) Result was my problems were not seizure related.

The EEG wasn't sleep-deprived, although I was my usual very tired self when it was done. Even dozed a few times during the EEG. The only instructions were no caffeine and come in with clean hair.

I did make sure I was good and sleep-deprived for the sleep study tho. Figured if something was going to show up, best if it happens then. And still nothing.

Still waiting for the neuro to call back.

Ok, just got off the phone with the neuro after calling him this morning.

I described the event and he said since I didn't lose bladder control or bite my tongue, it wasn't a seizure. He wants me to make an appt anyway to see him and get another EEG (yeah, like that's going to be any help).

He asked me if I'd seen an epileptologist about this. Ummmm.... no. Since you refuse to call any of what I've been experiencing a seizure or epilepsy and haven't referred me to anyone other than the neuro for another differential, why would I? At least he brought up the E-word this time.

Feh!

Dawn, if your problems weren't seizure-related, what were they? I'm seriously strapped for options here.

Keep in mind, these weren't presenting symptoms (just trying not to worry you)...but I have MS. And so a few years after diagnosis, I started having weird stuff happening in the night. They did the EEG to rule out seizures. It was finally concluded that the movements (best way I could describe it was I'd get like a jerky limb or muscle, sort of like a bouncing motion, and it would just continue with me unable to control the limb or muscle group) were myoclonic in origin, so I started taking Klonopin before I went to bed, and they have subsided a lot.

You can have myoclonic seizures...here's a pretty good Wiki entry on myoclonus.

http://en.wikipedia.org/wiki/Myoclonus

Oh wow! I'm so sorry about your dx. Is it being managed well? How are you doing?

Thanks for the link. I'm beginning to think everything I'm going through is a combination of perimenopause wackiness and a sleep disorder. Just got my hands on a copy of the sleep study done back in Sept. Less than 1% of stages 3/4 (it's supposed to be about 20%), very little REM, and slightly more than 10 microarousals/hr. If that won't screw up someone's CNS, I don't know what will. And the current neuro said it was normal. Ha!

Hoping the new neuro in Jan will have some answers. I'm going to be dumping the current one.

Yeah, sleep disturbances can do weird things to your body and hormones.

I'm a firm believer in changing neuros. There are good ones, so so ones, and awful ones (I guess that's true with any specialty but I'm more aware of it after reading MS message boards.)

One neuro will dismiss a report as normal, when it's clear that the results were not normal. You're doing the right thing by getting another opinion.

P.S. The MS is stable, I'm mobile, walk a little funny, talk a little funny. I don't have the stamina for a long shopping trip (and scooters seem to give me motion sickness, go figure), LOL, but think of all the money not going shopping is saving me!

Hey there, just a thoughts, has anyone heard of sleep paralysis, sounds a bit like that is what you may be experiencing. You can read about it on internet,


hope this helps

sylvia

Hi. I've got epilepsy and my seizures grew much, much worse when I began the perimenopause. I always got more seizures around my period and whenever I was pregnant, sleep deprived or under overwhelming stress. However, the hormonal storms of perimenopause definitely increased my seizures.

Also, I've a few friends who never had epilepsy their whole lives until the perimenopause. Very interesting stuff that I guess the "experts" can't figure out.

My son has severe epilepsy with uncontrolled seizures. He's had brain surgery, too. I've dealt with his seizures for years.
During a seizure a person cannot control the movements or stop them. Depending on the part of the brain affected, a person may or may not be aware of what is happening. Often there is a strange sense of foreboding before the seizure and sometimes a person will smell, taste or see things that are not there.

I will be 45 this year, also. I have had shaking of my legs (usually my right) many times since peri began. I am totally aware of these episodes, can talk through them, can even get up and walk through the shaking. The shaking in my leg will stop, for example, if I begin walking. I get a foreboding feeling before, also, and pressure on my chest and tightness in my throat like from anxiety. It is similar to the shaking of my legs I got when I was in labor. I will usually have the sudden urge to urinate, also, during the shaking. These shaking episodes of mine have never happened during the night or during sleep.

Some people do have seizures during their sleep. After a person has seizure they may become very tired and sleepy. My son will sometimes sleep on/off all day if he's having a lot of seizures.

My father-in-law takes many different medications and he finds that his legs will shake each night for about an hour - this started after he began a certain med. So not all shaking is a seizures- it can be caused by various things.

The Epilepsy Foundation is a good place to get general information. I hope you can find some answers for yourself, as it feels scary when you don't know what's happening to you.

My neurologist told me that 50% of epileptics have normal EEGs. If you are not having a seizure at the precise time you are hooked up to the EEG, your EEG will be normal even if you do have epilepsy. Sometimes, the brain lesion is so deep down inside, or on the underside of the temporal lobes of the brain, it won't be picked up by a surface EEG. So, too, with certain MRIs. In other words, many epileptics have normal EEGs, normal MRIs and do not have generalized seizures which cause tongue biting and such. I have partial seizures, usually non-convulsive seizures, which do not cause tongue biting and such. I have complex partial seizures and simple partial seizures, some tonics and some clonics. Perimenopause made my seizures more frequent, longer in duration, and more intense. I lose partial consciousness and they are terrifying. The drug I take to control them, keppra XR, causes depression. Great. Perimenopause depression + anti-epileptic drug-induced depression. It $uck$ but I'm powerless.

Hope you get an answer, and hope your cure does not cause depression like mine.