Nocturnal seizures

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majier

majier

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In the past month I have had two nocturnal seizures. I have no history of seizures, nor do any of my family members... I didn't really think anything after my first one, I figured it was just some "freak" incident but over this past weekend I had my second. My boyfriend was thankfully around to roll me on my side and make sure I didn't hit my head on the nightstand. They happen no more than an hour after I've fallen asleep and last for about 30 seconds. My eyes are open and are back in my head, I make gutteral/choking noises with my throat and for the 30 minutes following the seizure I am in a semi-concious state... I have no recollection of having had a seizure the next day but am very stiff, exhausted and have a headache. My first seizure led me to be rushed to the hospital by ambulance where they did a CT and an EEG. The CT came back clear and I just recently received my results of my EEG, which are as follows:

Findings: Background activity consisted of well regulated 11Hz rhythm over the posterior head regions that reacted well to eye opening and closure. Some individual theta waves were intermingled with the background activity at times, more frequently at T4-C4. Occasional v-waves were seen.

Hyperventilation: Produced a slight increase in the amount of theta activity seen, but could not be completed because of drowsiness.

Intermittent Photic Stimulation: Elicited a good driving response.

Impression: This EEG is remarkable for a mild, intermittent disturbance of the cerebral background activity over the right centro-temporal region. No epileptic activity was seen.


I had my first seizure at about 12:30 am and only went for my EEG around noon the next day- Is it possible since so much time had passed they missed epileptic activity? I have an upcoming MRI, which will tell me more.

I don't really know what to think at this point... Can anyone give me some insight? Help!

-Erin
 
Hi Erin, welcome to CWE!

The EEG isn't foolproof, and can miss seizures that are transient or that originate in areas not well-covered by the sensors. Some CWE members with epilepsy have never had a positive EEG. Others have required multiple and/or long-term EEGs in order to produce a finding that points to epilepsy. In the absence of a positive EEG, the clinical info (i.e. your actual symptoms) is what a neurologist needs to evaluate when making a diagnosis. For this reason, it can be helpful for you (or your boyfriend) to write a detailed description of what occurred. In addition, make a note of anything in the hours, days, or weeks leading up to your seizures that might be a contributing factor. Those could be things like unusual stress, fatigue, illness, changes in diet or behavior -- anything that you can think of, even if it doesn't seem obviously relevant.

Do you have an appointment with a neurologist to go over the results and any next steps?

Best,
Nakamova
 
Thanks so much for responding, Nakamova!

I have been trying to get a hold of my neurologist for the past month, but it's like pulling teeth! Ever since my last seizure i've been having abnormal behaviour/vision... it's as if I am inside my body looking out- very strange. I don't know how else to put it. I've read a lot on "auras" before a seizure, but since I'm sleeping when it happens I have no idea if this is the case! Ever since I was a teenager there have been occurrences where my vision changes and for years I have asked the person next to me, or with me, if they see it or notice it as well- this is what I am experiencing. Hues and contrasts a deeper, clearer, as if i'm viewing everything in HD... This time I am also very aware that I am on the inside of my body, looking out- It's freaking me out to be completely honest. Have you heard of this?

I know stress is a trigger, but I was recently on vacation in Florida when it happened- zero stress!
 
Distortions in visual perception can be a feature of seizures called Simple Partials. Simple Partials can take many forms. Generally, they are characterized by unusual sensations -- visual distortions, deja vu, jamais vu, phantom sounds/smells, feelings of dread, nausea, etc. The person is fully conscious during them. They can sometimes progress to seizures with semi-impaired consciousness (called Complex Partials), or into full loss of consciousness with convulsions (Tonic-Clonics). Aura is the name given to Simple Partials seizures that progress into these other forms. You can read more about them here: http://www.epilepsy.com/epilepsy/seizure_simplepartial

Sometimes the triggers are hidden or cumulative. Since your symptoms started when you were a teen, maybe hormone fluctuations are playing a role. If that's the case it's called catamenial epilepsy. More about that here: http://professionals.epilepsy.com/page/catamenial_patterns.html Other triggers can be certain foods or additives (MSG, aspartame, caffeine, gluten, etc.). If you're photosensitive, dapple sunshine or flashing lights can be triggering. Some people react to changes in temperature or air pressure. Triggers can also change over time. It's not always possible to identify them, but if you can, it's a plus.

Keep pushing to get the neurologist to see you. The fact that your symptoms have progressed is worrisome, and a sign that it's worth getting them evaluated for treatment.
 
Try not to stress as it can make matters worse. I hope you can get on to your neurologist soon. It is really important that you get evaluated. Once you have been evaluated and have a diagnosis you can at least have peace of mind. Take care my friend, it is all scary to begin with but you are among friends here.
 
I have also heard that things like what you describe can be partial seizures, especially if you have activity in the temporal lobe. I hope you get ahold of your neuro soon!!
 
Thank you everyone for responding! I've recently been prescribed an AED (keppra, I am taking generic levetiracetam). My neuro is sending me for a sleep deprivation EEG and MRI in the upcoming weeks. I am still waiting for a confirmed diagnosis. Is any one else out there on this generic brand? I feel like all I do is toss and turn all night. I don't know if its paranoia, the fact that I wake up wondering if I had another seizure, or the meds? I sleep for 10+ hours a night and after being awake for only a few hours I feel I could crawl back to bed and sleep for a month!
 
Hi everyone! Me again :)
As I've mentioned, I'm taking levetiracetam and i've noticed my emotions are going crazy!!! I take my dosage at 8:30 pm and by 9:30 I'm crying for absolutely no reason! I know I'm crying for no reason but I cant seem to stop? At noon, 12pm, I am ready to yell and scream (which is terrible considering the fact that I teach Pre-K and it's lunch/nap time). Is anyone else this way? I feel like a mess!
 
Unfortunately, Levetiracetam is known to cause intense mood swings and crankiness (called "Kepprage"). Let your neurolgist know ASAP what's happening. And in the meantime, try taking a B6 vitamin supplement -- it helps some people with that particular side effect.
 
Nakamova said:
Sometimes the triggers are hidden or cumulative. Since your symptoms started when you were a teen, maybe hormone fluctuations are playing a role. If that's the case it's called catamenial epilepsy. More about that here: http://professionals.epilepsy.com/page/catamenial_patterns.html Other triggers can be certain foods or additives (MSG, aspartame, caffeine, gluten, etc.). If you're photosensitive, dapple sunshine or flashing lights can be triggering. Some people react to changes in temperature or air pressure. Triggers can also change over time. It's not always possible to identify them, but if you can, it's a plus.
Click to expand...

hi majier, welcome fellow canadian!
my weird feelings started as a teen too but were misdiagnosed as PTSD for years until after i started having grand mals. mine isn't catamenial, but that you mention the strange feelings have been since your teens i would def follow that up with neurology.
as nak says air pressure can be an issue, and as you just came back from florida it's worth taking note of being in a plane. make notes of anything and everything you think of, no matter how trivial. the docs appreciate all you can think of to help them figure a case out and make a proper diagnosis.
and definately don't put too much stock in your eeg, even sleep deprived ones. they can help, but at the same time if they don't show anything it doesn't mean there's nothing going on. mri's are by far the more sound testing when it comes to things going awry in our heads.
hugs and all the best :)
 
Hi there
Sorry to read of your nocturnal seizures. That's good your boyfriend was there to keep check on you.
I had a nocturnal 2.5 weeks ago at 3am and my boyfriend was there too. Scared the lights out of him I think!
Im on 'Keppra' too (this whole generic vs branded issue drives me bonkers! Apparently the branded and generic should never be mixed - even if you run out of one - I'm going to ask the neurologist about this) and only ever had the tiredness/listlessness, never the 'rage'.
I hope you get the right dosage of the right medication for you and that the nocturnal seizures diminish or disappear altogether.
Take care, think positive (surely this can help us almost as much as medication?!)
 
the only difference between nocturnals and concious seizures is what side of the brain they're on. you really want to get them under control as soon as posible because one side can train the other, I have had surgery to stop seizures and since have only had nocturnal seizures which I am greatful for. got my license back... after 10yrs...
 
Nocturnal and daytime seizures can both originate on the same side or in the same area of the brain. It's not that they shift to the other side and then start happening in the daytime, it's that any kinds of seizures, if left uncontrolled, have the potential to lead to more seizures. Once the brain gets in the habit of seizing, the "pathway" of neurons that are firing abnormally can get larger and easier for the brain to follow -- much the way that a tiny footpath might develop into a wide road after constant use.
 
Only just last night whilst sitting up in bed reading twitter, I heard a load deep buzzing noise and my eyes blinked uncontrollably for under a minute ish. Could that be a seizure a partial siezure
 
Hi Majier, and welcome to the forum.

Our son's seizures started as nocturnal tonic clonic (grand mal) seizures, and he also has temporal lobe epilepsy. of the dozen or more EEG's he's had, only 2 have come back abnormal and that includes 1 overnight, and 1 48 hour EEG.

His seizures did eventually progress to daytime tonic seizures and also gelastic seizures -- so, as mentioned above, it's quite important to get on top of them as quickly as possible.

I concur with Nakamova on taking B6 to help with emotional turmoil created by Keppra. You might also try a magnesium supplement at bedtime to aid sleep, which will aid with nocturnal seizures.

If the Keppra isn't effective (i.e. if you're still having seizures), let your doctor know immediately. All seizure medications have nasty side effects -- Keppra isn't as hard on the body as some of the others, but hard on the emotions.

You might want to try some alternative approaches to seizure control -- such as diet (the Ketogenic diet, Modified Atkins diet, and LGIT diet are all just as effective at controlling seizures than any med on the market right now).

http://www.coping-with-epilepsy.com/index.php?p=low-glycemic-index-diet
http://www.coping-with-epilepsy.com/index.php?p=modified-atkins-diet

Even without going on a strict eating plan, many people with epilepsy can achieve good seizure control by simply eliminating sugar, gluten (mainly wheat products) and msg.
 
seizures could be a result of many things! lack of sleep, caffeine, candida, lupus, there are lots of things that can cause seizures. I'm currently trying to figure out my own! I am on carbamazapine and had a small seizure the other night (mine are only while sleeping) and I just want to get to the root of the problem. I know what you mean dealing with the emotions and mood changes, I dealt with that after coming off a medication and while I was on another....hope you figure out what is best for you. And encourage you to find a doctor who wants to help you get to the root of the issue(:
 
I wish I knew what brought this on. I've had simple partial seizures for over a decade... I just never knew what they were- I thought I was crazy! Seeing crystal clear, almost HD, a clearer life so to say; spots; blurbs of colors; jamais vu's. I would always ask anyone around me, "did your vision just change?" Hoping, praying, someone would be seeing it too.... Nope! Even with my medication, I'm still getting them daily or every other day. Is this normal?
 
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