have i got a new type of seizure? (tingling)

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tabbycat

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...please say it isn't so! sorry if this is long. i haven't written much in the forum yet but there's lots of info and help to be found so i ask you. please please read although it's long!

this is it: i have simple partial seizures where i am completely aware of what's going on. it's either a déjà vu like feeling; sort of like a film. lasts for half a minute or a minute or so. That has only happened once in 10 years. when i had them before i took tegretol and the seizures stopped. after many years the dr took me off the tegretol and after that i've had other experiences. i didn't regard them as seizures but the new neurologist said they were. It's like suddenly occuring memories, like a snap shot - often a real memory, sometimes something unfamiliar. last only a milli-second! since i found out it's epilepsy i've been put on lamictal. it's been 5 weeks now.

now to my question! last night i could hardly sleep and i woke up at around 2 o'clock. the next couple of hours i was inbetween being sleep and being awake. at one point when i was about to fall asleep i felt a sensation i've never felt before; like a slow, pulsing wave in my whole body. on the inside only, not on on the skin, lasting a few moments. not at all uncomfortable. i was thinking, "what's this?! am i about to have a "real" seizure for the first time?" nothing more happened. since i never had this before i started worrying and thinking about it. on the other hand, i might be over reacting since i've slept for like 2 hours and lack of sleep and that sort of dream like state can be weird for anybody, epilepsy or not. so what do you clever people think, should i worry?

take care!
 
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Medication caused unusual seizures for my daughter, that had not occurred before, nor have occurred since. She remains med free by doing a combination of nutritional changes, supplements that support brain and body health, and neurofeedback.

Epilepsy is not a disease, it is only a label that means you have had more than one seizure (or seizure type). Migraines are now listed in the seizure family. So one needs to consider trying to find out WHY this is occurring and treat the cause if possible. Medication is only a bandaid.
 
Hi Tabbycat --

What you describe could be a kind of seizure, but it could also be a side effect from the medication. You've been on the Lamictal only five weeks, so your body may still be adjusting. I've been on Lamictal since last fall, and the side effects have changed (some for the better) over that time.

The sensation could also just be that -- a sensation, related to being tired, starting to fall asleep, overheating (Lamictal sometimes does that), etc. I would recommend that you keep a journal (if you don't already) to record what kinds of sensations or side effects you experience and when. In addition it's good to note things like sleep, diet/metabolism, overall health, etc. -- you may be able to find a pattern or a seizure trigger in this way.

Best,
Nakamova
 
I've had some similar feelings while on Lamictal... it may just be a side effect of the medication. Especially when I'm not sleeping well. I'd say give it some more time.

Some great points have been made here - keeping a journal is a great idea. I'm using seizuretracker.com and it's proving really useful.

I've had a similar feeling like you described - the wave. But only from my head to my waist.
 
side effects, didn't think of that! but what i have noticed is that i sweat alot during the night! i've also felt really sick and i've had ...eh, really bad stomach if i put it that way! (for nearly a week but it's okay now.) thanks for your reply!
 
interesting that you've had something similar! i haven't felt anything like it afterwards and i think my body + brain is getting used to the medicine now. i wonder how much i need to take before it's as good as it can get for me. how much do you take? i'm now on 100 mg x 2 (morning and evening). thanks for your reply!
 
hi, i haven't thought of it that way, that it's not a disease in itself and the medicine being a bandaid! interesting! and also what you mentioned about unusual seizures while being om medication. thanks for your reply!
 
I'm also on 200mg (100mg x 2). I take the morning dose at 7am, and the evening one at 5pm, and that seems to work pretty well for me. I found that the earlier evening dosing seemed to lessen the nighttime side effects. You might want to experiment a bit to see if that makes a difference for you.

With Lamictal, there's no target blood serum level that is optimum. If you don't have seizures, then you're at the right level. If you do have seizures, you may need to adjust the medication, or try a different one, or --ideally -- eliminate seizure triggers from your life.

I think of the AED meds as very blunt treatment tools -- they dampen the entire brain-forest in the hopes of preventing a single tree from catching fire...
 
Hi tabbycat,

I hope you're doing well now.

I'm on 275 mg twice daily, at 8:00 am and 8:00 pm. My neurologist said I'm at the max amount for me.

I was on tegretol for 12 years and the side effects got so bad I decided to switch. I've been on lamictal for 5 years now, and I like it much better. But in time I may need to switch again, as I don't really want to add another med to the mix (see my recent post on clobazam...)

Anyways after weaning on to lamictal and off of tegretol I was on 175 mg twice daily, and have worked my way up to 275 twice daily in the last 5 years. But then again I have also put on some weight... :) I went from super skinny to normal, so maybe it's not that I've gotten used to it but that I've gotten bigger and thus need a higher dose.

I've been rambling on again. anyways I hope you're doing better and not having any seizures!
 
First - Hi! I'm brand new to this website today. I was looking up: seizures tingling brain and it lead me here. I'm not 'brand new' to epilepsy. I was diagnosed with simple & complex seizures when I was 15. (33 now) I've currently on trileptal and lamictal. Lamictal is my newest med. It was horrible for me to get used to. I wasn't able to sleep for weeks. Somehow I finally adjusted. But this 'tingling' in the brain... I dunno about this. It only happens on the right side of my head towards the front of my face. It's like that part of my head 'fell asleep'. It doesn't hurt & I'm fully aware when it's happening. It's just kind of concerning; partly because it's been happening a lot more frequently. I'm wondering if it's a form of a seizure I should be documenting. I use seizure tracker, too. And, since I started Lamictal I've only had 5 simple partial seizures. (much better than I had been doing.) Thanks for listening.
 
ewerve,

Thanks for your post. I'm on lamictal and get much of the same. I haven't slept in months - I usually get 2-3 hours a night. The last two nights I broke down and took sleeping pills - it took 2 of them to knock me out. I know, not the safest of practices. Plus they are addictive, so I can't take them very often. So I'm stuck. No sleep.

I get the tingling in my brain. I used different words with my epi. I said I had this electrical feeling, kind of like when you get the kind of electric shock that slowly climbs up your arm. I've told my epi, and he says it's not a seizure or an aura. I respectfully disagree.
 
Tabbycat,

Welcome to the forum! What you are experiencing could be a seizure, could be the lamictal, a silent migraine, or a sleep disorder. Keeping a journal is critical in helping your neurologist figure out what's what. Be sure to write down what happens before you experience "the wave." And after. Here are links to different pre-formatted seizure journals. Pick the one that works best for you. http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

I'm on Lamictal. It was rough for me at first, too. I got a rash the first time, severe hyperness, tingling, etc. the second time. We ended up ramping up very very slowly, and after awhile I was okay. Now I'm doing fine on it with the exception of not sleeping.

Hang in there.
 
I miss my epileptologist; I really admire him. He did a lot to help me. Due to an insurance change I now see a neurologist (I'm sure he's totally qualified and all that), but it's not the same. Periodically I still have sleepless nights. I've just thought it was stress. Usually I fall asleep ok, but then I wake up and lay awake for hours. What sleep aid do you take? I might ask my doctor for an RX to see if it helps when I'm having a rough night. Thanks.
 
Hi ewerve -- I had the same problem with Lamictal when I first started. My sleep was very restless and light. I also had very strange and occasionally disturbing dreams. I was cranky at the thought that I would have to resign myself to this side effect. But eventually (after a few months) it did go away, and now I tend to sleep 8 hours whether I want to or not. I think part of it was my system getting used to the Lamictal, but I also slowly backed off on my dosage over the course of a year and that has helped too.
 
I take Trazadone. Not good - it's addictive. I have only taken it four times since it was prescribed for me a few months ago. I'm scared of that, and the hydrocodone I take for headaches. I don't want to end up addicted to prescription drugs, on top of all the other problems I have due to E and the IIH.

If you find another alternative, will you let me know?
 
Wow

There are alot of people on Lamictal. I've had similar experiences as afar as th range of siezures go. I had most of the sensations and feelings that ya'll described... these started before I started Lamictal. I asked a neurologist about this, his response was that being conscious during a siezure isnt impossible especially wit those who have lived with it for a long time ad have developed ways of combating them. I've had siezures where I was completely conscious and could see and recall things where I actually shook on th ground like a grand mal, I couldnt control th shaking and it was all I could do just t stay aware. Inspite of that, when the occurance was over I laughed because I felt it was an accomplishment to stay conscious during something like that. Often siezures of that nature arent even called a siezure due t th consciousness factor. On another token, if you do have one of these and you did not loose consciousness, because you were aware th entire time... you cant have your liscence revoked or suspended.
 
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