Was This A Seizure?

[mkoven]

I'm a little freaked out. I just woke up to a very unpleasant episode. I had woken up from a dream and was lying in bed mostly awake. I then had a strange sensation wash over me, there was a whooshing sensation in my head, I couldn't speak or move as I wanted, and then my legs--at least my left leg-- started rocking. This went on for several seconds, till it stopped and I could make sound come out of my mouth. I then tried to grunt/scream to bring myself out of it. It felt like it could happen again if I started nodding off. Very strange. My vision was a little blurry after.

A sensation that something similar was about to happen occurred when I was between the zonegran and the keppra a little over a week ago. (On my quest for an anti-migraine drug).

I'm not sure what to do. Was this something seizure-esque? Both my migraine doc (out of town, not actually a neurologist) and my ans doc ( an endocrinologist) have ordered for an eeg to be done to rule out seizures, but my local clinic won't take a paper prescription from an outside physician. The outside doctor's office has to call and speak with them directly. So I haven't been able to get an eeg, as it's been hard to get the bureaucracies of the different offices to work.

In addition to ncs, I have tuberous sclerosis (though to my knowledge had never had seizures when younger), complicated migraines with weird neurological symptoms, and sleep apnea. I've been exhausted lately, because I keep waking up from the apnea, so am definitely sleep-deprived-- which helps nothing. But it's scary to sleep thinking this might happen again. The first time was as I was drifting off, and this morning was as I was waking up.

What do you think? I don't know who to call who will look into this with and for me. I don't have a neurologist, as he was the guy who fired me when my migraines got too hard to treat. I don't know who to call to see what happened and what, if anything, I need to do. I just called patient advisory who said it didn't sound like I needed to be seen urgently and to follow up with my pcp. I can do that, though getting through to his office is often an exercise in frustration.

I just really don't want this to happen again. It was pretty creepy.

thanks,

Michele

[MightyMouse]

Does sound kind of seizure-ish...but of course, I'm no neurologist! I guess you should step up your work on getting your doctor to call the place that does the EEG so that you can be sure that if it was a seizure, you're getting the proper treatment.

Nina

[Megan]

I have had episodes similar to this that ended up just being POTS related and not seizures, but definitely push for the eeg! I hope you find some answers.

Meg

[maryfw]

Seems like I have heard something about sleep paralysis too where you wake up but cant move or speak. That has happened to my husband before but he did not have the shaking part like you did. Definitely mention it to your doctor.

mary

[flop]

Hi, sounds like the advice to see your PCP is the best thing, doesn't sound like you need an ER trip unless you have further problems and can't see a doc any-other way.

Hopefully the communication issues will get resolved and you can have your EEG done soon. Just so that you know diagnosing

?seizures is not always easy. The EEG in someone with seizures can be normal (unless it is recorded during a seizure when it would show abnormal electrical activity in the brain), just as you can have abnormal EEGs but not have seizures (confusing - huh?). I guess that is why it takes so much training to be a neurologist, to try to sort out these tricky are they/aren't they questions!

Hope you get some answers and relief soon,

Flop

[mkoven]

I did get scheduled for an eeg, but it's not until the eleventh of April. i'd heard, though, that it's good to get the eeg within 24 hours of the episode for the best hope of capturing something. Anyone know if that's right?

My headache doc had suggested I get seizures, esp hormonally induced ones (premenstrual) ruled out as a cause for some of my weird neuro symptoms and syncope. It just wasn't possible to get the various offices to move on this before. And by the time the eeg happens, I'll be after my period, in all likelihood.

I just really don't want an episode like last night's to happen again. It was super creepy. I was awake and conscious but couldn't stop the sensation, couldn't stop my legs from moving, and couldn't speak, or snap out of it. As soon as it let up, I got up immediately, because it felt like that if I lingered in that pre-post sleep mode, it could start up again. I still felt a little strange after, and have waves of metal taste in my mouth--almost like the taste of blood (but there isn't any).

I hate feeling so out of control of my mind and body.

[Miriam Poorman-Knox]

Michele, I have had a couple of these years ago. My husband told me the name cannot remember just now. When he gets home will ask. It is getting stuck in between stages of sleep. With all the other pauses that you have this might be something else. Yet this is a possibility. M

[JoyNtheJourney]

Seems like I have heard something about sleep paralysis too where you wake up but cant move or speak. That has happened to my husband before but he did not have the shaking part like you did. Definitely mention it to your doctor.

mary

I do something very similar to this quite often, especially if I've been awake in the morning and then go back to sleep OR if I take a nap in the afternoon. I, too, have been told that it is called 'sleep paralysis' and has something to do with the different sleep cycles. When I have these events, I usually know I'm 'awake' but I can't speak or yell and sometimes I 'think' other things are going on around me. I've often been fully aware that I was on the bed but thought the phone was ringing or someone was ringing the door bell but I couldn't make myself get up. Sometimes I even think someone is in the house and I can't get up. It is very strange because I KNOW I'm awake but I still have some type of 'dream' going on. It is quite frightening at times!

Here is a link that tells a little more about it. SLEEP PARAYLSIS

[sarct]

I had this happen before as well. My neurologist wants to set me up for a sleep evaluation since he thinks I have narcalepsy. He said this could happen with that. The reason he thinks I have this is because I feel like I am awake all night long. Like I know everything that happens during the night, remember all my dreams, and am tired during the day and always take a nap. We will see. I haven't gotten around to the sleep study thing yet. I remember him asking if I ever woke up and was unable to move. I remember that happening once to me.

[mkoven]

Thanks to everyone. Because of the leg rocking and metallic taste, I think there is concern that this isn't sleep paralysis, but possibly seizure. . Anyway, by a stroke of luck, (and a lot of persistent phone calls), I got fit in for an eeg tomorrow afternoon. The catch is that I can only sleep four hours tonight. I guess sleep deprivation lowers the seizure threshold. And no coffee. But hopefully I'll get some answers.

[pat57]

I have had seizures due to lack of oxygen. It does sound similar to what you report. I do not get the whooshing sensation or the metallic taste. I am not aware of the extent of things going on. Sounds , movement- time passing. I think I am aware, but when folks tell me what happened, most of it I missed.

I would -easily- report having moved my legs some, only to find out from others there was very much movement.

A metallic taste is much more electrical activity (epilepsy) related.

Did you hands tense up before the event? Is you neck sore? Were you exhausted afterward?

[mkoven]

I don't know about my hands. My stomach was messed up and I had to go to the bathroom, and my vision was blurry briefly after. I felt strange after--not too exhausted. But I didn't want to go back to sleep, as it felt like it could all start up again-- not sure if it would have. but I'm so tired today-- probably from waking up to this at 4am.

I have been having trouble sleeping with the apnea and my realization that it is apnea--(and that I'm not getting cpap for several more weeks). I'm sure being sleep deprived didn't help. and who knows where my oxygen was before this happened. I'd been dreaming till the moment I woke up and it started-- and I have a lot of apneic events during rem.

I just know it was very unpleasant. I've had isolated pieces before-- an orange flash plus metal taste; a weird sensation washing over me with a pit in my stomach and feeling like I was about to start shaking, but then snapping out of it--while on the verge of sleep.

and then there strange symptoms that I was told were basilar migraines-- but maybe not or maybe not only?

I'll let you all know what happens at the eeg

[Sunfish]

i'd vote on it being more sleep-disorder related than seizure-related, but the seizure possibility doesn't sound impossible. also possible to be related to blood pressure &/or oxygen saturation problems. i agree that it's not an emergency since it passed though understand why you're uneasy not knowing what it was and if it might happen again.

glad to hear the scheduling hassle got worked out for the EEG your docs want done but as others have mentioned one EEG won't necessarily rule seizures in or out. the only time an EEG is foolproof in ruling seizure activity in or out is when it's done during what is suspected to be the actual seizure. that said, there is some truth to what you heard regarding the possibility of "catching" something abnormal within 24hrs of suspected seizure activity. it's by no means a certainty, but for some people and/or some types of seizures abnormalities can appear in the hours following a seizure even when symptoms are gone or all but gone. but even if something abnormal showed up on an EEG now it wouldn't be certain that it was related to what you experienced earlier. there would be a chance it would provide clues of some sort but very unlikely any definitive answers.

so...bottom line is that unless the symptoms return & don't abate on their own i don't think emergency evaluation would accomplish anything. i obviously hope that this is a one time fluke but if it's not and/or if your docs are truly concerned about seizure activity on an ongoing basis the only definitive answers will come from having an EEG during or immediately after the suspicious symptoms occur. for some people this unfortunately means having to do continuous EEG monitoring on an inpatient basis in order to "catch" the suspected seizure activity but that's certainly not done unless absolutely necessary.

a sleep study could also provide insight to what's going on if it recurs. though not as detailed as full EEG monitoring/ testing, sleep study monitoring does monitor some brain wave activity, almost a "mini EEG" of sorts, so that - amongst other things - it would show abnormalities if a true seizure occured during the testing. and of course it would also help diagnose sleep paralysis, various sleep stage disorders, and/or other possible sleep-related problems that could be the cause of the symptoms you experienced.

hope this helps,

melissa

[Sunfish]

p.s. in my mentioning of a sleep study, i realize that you had one done recently. mostly i was meaning that if the new symptoms you had this morning continue that it might be something new that merits additional evaluation. not now but just as a possibility in the future.

p.p.s. i can't recall what new meds you may be trying at the moment but some meds can also - in effect - "cause" sleep disturbances that wouldn't have been there otherwise in some people. obviously seizures can be triggered by meds too, either individually or in combinations, so if what happened doesn't end up being a one time thing i'd definitely look at any med changes. metallic taste can also be a side effect of various meds.

[mkoven]

Thanks, Melissa. Medwise, I'm on low-dose keppra (250 a day), 37.5 of plavix, singulair, allegra, and midodrine. I also take ibuprofen fairly regularly.

I'm also premenstrual-- so who knows how that figures in. I know that hormones trigger my migraines but other stuff too. Given how sensitive I am to meds, I imagine I'm just as sensitive to my own hormonal shifts--like the princess and the pea.

So now I have to figure out how to stay awake until midnight. I'm usually pretty fay gone by 930, if not earlier. Not sure if there's some really gripping movie. A horror movie would work, but I'm already freaked out enough! I've been waking up at 3 and 4 anyway, so the getting up won't be so bad. (they said to only sleep from 12-4).

[pat57]

Well, a seizure is not considered an emergency. It sounds odd, but they are self limiting. After 5 minutes you are supposed to call an ambulance. There is status epilepticus, which is life threatening and long.

Also I'm pretty sure a seizure due to lack of O2 will not show up on an eeg. And FYI the docs watch brain waves during 2 or more contrived situations. You are not just hooked up, there are various situations imposed.

Still the EEG has a bad track record- as Melisa pointed out.

http://www.medicinenet.com/sleep_apnea/page5.htm

Oximetry is used to measure the decreases in oxygen in the blood during apneas and hypopneas. The video monitor is most helpful for detecting movement disorders, parasomnias, or seizures during sleep. (Often a patient will not remember sleepwalking, sleep talking, or other parasomnias, so a video is helpful to review the events with the patient.)

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

A parasomnia is any sleep disorder such as sleepwalking, sleepeating, sleep sex, teeth grinding, night terrors, rhythmic movement disorder, REM behaviour disorder, restless legs syndrome, and somniloquy, characterized by partial arousals during sleep or during transitions between wakefulness and sleep.

[mkoven]

Well, we'll just have to see, I guess.

My ans doc wanted me to do a 24 hour eeg, but that will have to be somewhere else, as noone does those in my little cow-town.

[DADofPotsSon]

My son #2 was put on a low dose of Keppra for what was thought to be seizures, these events became more frequent, so more keppra was added, then the frequency increased again, so they added more keppra, the events became even more frequent, so they added more keppra, do you get the point.

It was not until he was connected up to the EEG and EKG during an event that they verified that he was not having a seizure and was actually having convulsive syncope.

It was later presented to us by a neuro at a different hospital that keppra can cause an increase problems in people with NMH, NCS and or POTS. This was also told to us by Dr. Grubb.

He has actually went into status elipticus after a severe hypovolumic shock cause by dehydration from being sick, so he was put on Dylantin for a while, this along with the toprol xl helped his POTS and prevented another status elipticus seizure.

He did complain alot about different or weird things happening when he was on Keppra. As I have said, more than one doctor told us keppra does not mix well with POTS.

Convulsive Syncope is the condition most commonly confused with epilepsy. Convulsive Syncope is also much more common than epilepsy.

"A typical attack takes following pattern: prodromal symptoms of nausea, clammy sweating, blurring, greying and possible loss of vision, lightheadedness, dizziness and tinnitus. Many of these individual symptoms are difficult to describe and their description may be vague, but the collection is characteristic. Subsequently, the patient will look pale and be sweaty. Mydriasis, tachypnoea and bradycardia may be noted. Muscle tone is reduced, causing the eyes to roll up, and the patient falls to the ground. In the horizontal position, skin colour, pulse and consciousness then usually return quickly, within seconds. While the patient may briefly feel unwell, confusion, amnesia and drowsiness are not prolonged. Injury and incontinence are rare but may occur. Tongue biting is very rare in syncope."

"Diagnostic confusion may arise when a few myoclonic jerks occur during the anoxic phase. Such myoclonic jerks are usually multifocal, rarely rhythmic or prolonged or of large amplitude, and should not be misconstrued as a true epileptic seizure. Videotelemetric recording shows that epileptiform EEG changes do not occur during such episodes, and the myoclonic activity has no consistent relationship with any EEG changes. If recovery from cerebral hypoperfusion is delayed (for example, if the patient is held in an upright position), a secondary anoxic convulsion may occur. These episodes also should not be considered to be epileptic seizures."

The point of the quotes is that it is very easy to view and be confused by the convulsive syncope vs. a seizure

DADofPotsSon

[Tessa]

I am very sorry that you had to go through such an experience but hope that you can get the answers to that event soon.

I am looking forward to the results, too.

Take care,

Love

Tessa

[mkoven]

No results, but just did the test. Will keep you guys posted. They wanted me to try to fall asleep, but I wasn't too successful. I now have a killer headache from the sleep deprivation and no coffee. But at least it's done.

[ajw4790]

Hi!

I hope you get some answers. I am not sure as far as what it sounds like. I think it could be many things including a weird migraine or adjusting to meds side effects. I have had some of the same symptoms before, but not all.

Have you had any more symptoms along the same lines since?

Good luck!

[mkoven]

A smaller episode just happened. Similar timing. I had just woken up, and was contemplating going back to sleep (barely after 5am). Closed my eyes and saw a brief flicker in my left eye. I then felt all tingly on the left, esp my head, and started to feel overall strange. Some weird sensations in my lower abdomen. It didn't progress like it did several days ago, but definitely made me get out of bed. I don't want a repeat. There's something about that period between sleep and awake.

Of course I'd love to go back to sleep, but am reluctant to try. It doesn't feel like this is likely to happen if I'm up and awake.

Not sure when I'll have the results of the eeg. I'm scheduled to see my migraine doctor in Chicago on Tuesday. I'm sure it would be helpful to have that report. She was one of the people who thought an eeg was in order back in January. Not sure how up she is on the meanings of different neuro symptoms beyond headaches, as she is a headache doc specifically. and not a neurologist.

But it would be nice to know what we're treating. Since it seems she keeps pulling from the antiseizure drugs for migraine prevention, I'm sure it would be useful to know if we need a drug to treat something beyond migraines too. So part of me wanted to reschedule the appt till I have the eeg report. It's a three hour drive to Chicago, we're leaving the night before, I'm cancelling classes, and I don't want to go there for my fifteen minute appointment to be told that she can't do anything until we have more information.

On the other hand, she's a smart doc and might have some insight into these creepy episodes. And I otherwise won't see my primary care doc until Friday. I just want to know what these things are and to make them not happen! It is making sleep stressful!

[ajw4790]

Hi!

Hope all is well. Hopefully your dr. appointment will go well and you will start to get some answers.

[mkoven]

It all started up again this morning around 430am. there is definitely a pattern. between wake and sleep, worse as the morning approaches. strange brief flickering in one eye, weird tingling on half my scalp, then this rising feeling in my gut, ahnd like I have to go to the bathroom. it didn't progress to uncontrolled movements, and feeling paralyzed-- luckily, as that is by far the creepiest. if i knew it would stay with just the creepy sensations, i think i could deal.

[morgan617]

There is a loss of consciousness as a rule, with seizures. Or a lack of awareness of what's happening. Even with Petite mals, itty bitty seizures, where all you do is stare and go blank for 10 seconds, people don't realize they have gone blank, even for a few seconds.

I would guess this is some kind of sleep thing, because people can't stop seizures either. Well, or some new great POTS symptom. Oh boy, just when you get used to the ones you have..... I had an inpatient eeg that lasted about 24 hours or so. I have periodic paralysis, and go completely limp, I can't stop it no matter how hard I try. I also feel like I'm going to be incontinent, but the feeling goes away as soon as I go limp, then I pee a gallon after the event is over. Typically with seizures if you feel like you have to go, you will.

I have had episodes where I get really bad tremors too. My eeg was normal, which I knew it would be, because I am aware of everything when these episodes happen. So I knew it wasn't seizures. and the results did not suprise me at all. The doctor's attitude horrified me however, so be prepared.

Since you have apparently had a sleep study, and you are getting CPAP, did they notice anything besides apnea? Do you have your report? I do hope they do figure out what's going on. Many times, even when people do have seizures, it's idiopathic and they never do figure out what the problem is. It can be as frustrating as OI.

By the way, after this eeg, your scalp will "snow" for days, so be prepared for that too. No matter how much you wash your hair, you will have the guiness book of dandruff for at least 3 days. The goop they use for the electrodes is horrid, it doesn't itch or anything, but it's a real pain. For the inpatient eeg, they don't try to induce anything, but they watch every single move you make and have a microphone to recored everything, like a sleep study. You are also on a heart monitor. So it's kind of the same concept as a sleep study, except with a zillion more electrodes on your head. Good luck! morgan