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Date of last update: 10/04/2017.
Forum Name: Neurology Topics
Question: Possible nocturnal seizures?
|SoylentGreenie - Fri Nov 14, 2008 7:47 am|
Hi! Sorry this is so long.
Female, 45, about 10 pounds overweight.
I've been having what I call "wake-n-shakes" since April of this year. 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 as little as once a night ever few weeks, but has happened as many as 3-4+ times a night several nights in a row.
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 (static, not moving) images and a feeling of dread/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 in the lentiform nucleus the radiologist said was most likely nonsymptomatic. EEG results were normal in spite of tremoring in my jaw during the hyperventilation segment.
Had a polysomnogram with MSLT. The sleep study came back normal in spite of having several episodes during the study (and no apnea). The only abnormal test result to come back was the MSLT which showed moderate excessive daytime somnulence (fell asleep during all 4 nap episodes in under 7 minutes and reached stage 2 sleep in 3 of them). 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. I have no idea what a sleep paroxysm is.
A bit more history....
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 went 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. At the onset of the full-blown migraines, the pre-migraine episodes stopped.
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. I'd also have gastroperesis during these. When I vomited, I'd see meals ingested as much as 18 hours prior (lunch the day before).
I'm seeing another neuro in late January (referred by my current neuro). Until then, I'm hanging in limbo.
Could all these be related? Could the pre-migraine episodes really have been seizures? What is a sleep paroxysm? Is there really such a thing as pre-migraine episodes? Since hormones triggered my migraines (usually), do you think entering perimenopause has triggered these nightly episodes? Any idea what my next move should be?
Thanks in advance for your help.
|John Kenyon, CNA - Sat Nov 29, 2008 11:21 pm|
Hi there -
First, it sounds as though you are presently experiencing occasional nocturnal Jacksonian seizures, a type of focal seizure that starts in one location and can actually be observed traveling, as from a hand up an arm, etc. That, in itself, doesn't help much, except to know its name. Oh, and "paroxysm" is a word which came to replace "fit" or "spell" and has no intrinsic meaning of its own except as a descriptor of an event which starts and ends suddenly. When it is used in the way your doctor used it, by itself, it is an anachronistic clinical euphemism for "fit" or "spell" and tells us nothing. Now then...
You have a history of what would seem to have been partial seizures in early adulthood, which started in much the same way the later migraines would start. This isn't especially unusual, either, that either might morph into the other. I'm quite certain these are all related and probably share the same underlying cause, which is likely a lesion in the temporal lobe, which is often difficult to visualize even with MRI. The glyoma located in your lentiform nucleus is a rather unlikely cause, although it arouses some suspicion simply because it was noted and you have all these symptoms.
To answer your closing questions in order, yes, all this could be (and probably is) related; I think the "pre-migraine" episodes were probably actually partial seizures; a "sleep paroxysm" is a nocturnal "fit", or seizure, a very non-specific description of what's been happening and in very old-school terminology; there is such a thing as pre-migraine episodes, and they are usually called auras. They also occur prior to seizures, and the two can be interrelated or even arise from the same underlying focus; entering perimenopause might well have triggered the new migraines. And finally, your next step is already set: see a different neurologist.
I hope this is helpful to you. Best of luck. You've been putting up with a lot, and I'm sure January seems a long way away, but it will hopefully be worth it having to wait and see a new neurologist who may have a more up-to-date perspective. Best of luck to you and please do follow up with us as needed, and for sure update us after you've seen the new doctor.
|SoylentGreenie - Thu Dec 11, 2008 11:32 am|
Thank you so much! Just putting a recognizeable name to these things is an immense help when it comes to dealing with them. I made an appt with an epileptologist for Jan 15th. Will still be keeping the appt with the other neuro on Jan 29th, as a backup.
I've since dropped the current neuro. Had another event last week which was different than the others. Not nocturnal or sleep-related. Olfactory hallucinations, electrical shocks through my body, altered consciousness during the event, and impaired memory of the event afterwards. I called him and he said since I didn't lose bladder control or bite up the inside of my mouth, it wasn't a seizure. Guess that's my final proof he isn't the right doc for me.
Will definitely post updates on the appts. Thank you again! :)
|John Kenyon, CNA - Thu Dec 11, 2008 8:43 pm|
Hi there -
You're very welcome. I know I always feel better when I can at least know the name of the thing that's bothering me, so I'm glad that was a help. I think you're right, the response to the recent incident with new symptoms does demonstrate this particular doctor isn't a good "fit" for you (no pun intended) and I'm really glad you were able to find an epileptologist -- there aren't enough of them out there. Good idea, also, holding the later appointment. It can't hurt.
Best of luck to you and thanks for this followup. We'll be standing by to hear more after you've been seen by the new doctor/doctors. Stay in touch.
|SoylentGreenie - Thu Jan 15, 2009 5:32 pm|
Just posting an update. Saw the epi today.
Well, no answers. Not even sure I'm any closer to answers.
The epi, and younger neuro who did the neuro exam, were both nice, listened, and both gave the impression they thought my problems are largely psychological in nature and origin. Lovely.
When am I going to learn to NOT mention history of emotional trauma? When? When? When?!?!? *headdesk* It seems to cloud the waters, more often than not, and I'm afraid too many docs are going to grab tight to the psych element and completely dismiss any real physical aspects.
Still, I understand their reasoning. Perhaps depression, stress, and anxiety are contributing to what's going on and, if weeded out, they can see what's left and deal with it. Nevertheless, it's not very satisfying.
Got a referral for a neuropsych exam, another MRI w/and w/o contrast, and a script for Lexapro (because they think I'm depressed but don't know it). Had to fight for the MRI, btw. They want to see me again in 3 months.
One of the nice things about going in with absolutely no expectations is that you can't be disappointed. Walking in with hope is another matter entirely.
I'll be keeping the appt with the other neuro on the 29th. Never hurts to get a backup opinion and all that.
|John Kenyon, CNA - Fri Jan 16, 2009 11:51 pm|
Go easy on yourself. You're doing "full disclosure" which, ideally, would be a help and not the hindrance it often is. You've gained a lot of insights into the process, and that's going to eventually work to your advantage.
It must be terribly frustrating, but it also may be true that there is an emotional component to what's going on. There usually is, even though there may be a concrete physical cause at bottom. Sometimes it's a little of both, sometimes it's all one or the other. It's the job of the medical profession to determine this without prejudice.
Please do keep us updated. Hopefully soon you'll have more answers. I know this has to be very frustrating for you. Hang in there.
|SoylentGreenie - Fri Jan 30, 2009 8:07 am|
Hi John! :)
Between ranting, raving, having a good cry, and talking with someone who pointed out a different perspective, I'm feeling a lot better about the Epileptologist appt these days. They really are doing the proper testing they need to in order to figure out what's going on, in spite of the "full disclosure" and my original impressions.
Scheduled for brain (epilepsy protocol) and c-spine MRIs on the 5th and neuropsych on the 13th. Hopefully, this'll bring an answer or two.
In other news, yesterday I saw the neuro I'd been waiting 3-1/2 months to see. If nothing else, this appt made me even more appreciative of the Epi's thoroughness than I was before. Really wondering why the (ex)neuro referred me to her. She specializes in MS. I don't have MS. Nobody suspects MS. Huh?
The neuro's suggestion was to wait and see if my symptoms developed into anything "significant" and then come back and she could do some proper testing. Otherwise, I'd have to learn to live with them. She completely disregarded my headaches, seizure-like episodes, parasthesias, tremors, etc. I left the office with a script for an MRI and a feeling of distinict dissatisfaction. Won't be going back there again.
Anyway, thanks so much for all your info and support. I really do appreciate your efforts here on this board. Will post again once I find out anything.
Take care. :)
|tombarney - Mon Apr 06, 2009 10:22 am|
my girlfriend has Epilepsy and has been gievn Lamotrine but also takes Amitrptyline , Nytrol , as well as other pain killers for other complaints but also drinks most evenings I have noticed over the last few months that she has mood swings that are frequent. As i am her boyfriend and not a medical expert she wont listern when I tell her somthing is wrong. Could this be all down to the medication mixed with the alchol and what would be my best cuase of action to help her.
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