Does anyone else have this problem?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
3
Reaction score
0
Points
0
Hi, I'm Emily. I'm new here and I have a few questions. I wasn't really sure where to post this so I hope it's the right place.

First of all, I'm 19 and have had epilepsy since I was 13. It was controlled on Carbatrol for about 5 years. In the past year or so I have been having quite a bit of problems.

When I first found out I had epilepsy I was having tonic-clonic seizures and just one atonic seizure. I started taking Carbatrol and was fine after that (I would only have seizures when I forgot my meds).

About two years ago I started to sleepwalk. I would just get up out of bed and walk around the house semi-responsive and semi-conscious. I have done some strange things while sleepwalking (taking my indoor cat outdoors and putting her in the car, picking out a random book from a bookshelf and giving it to my dad.) When I wake up after I sleepwalk I remember it as a vague dream. I only sleepwalk about 2-5 times/month. I think it might be triggered by lack of sleep. My first neurologist assured me that it had absolutely nothing to do with epilepsy, but when I switched neurologists the new guy told me it was a 'type of seizure'. I have never heard of sleepwalking by people with epilepsy before, so my first question is does anyone else experience this or has heard of something like this before?

About a year ago I went to an amusement park with some friends. I was fine the whole night. There was no drinking or drugs at all. I got home around 3am and went to sleep (3am is not an abnormal time for me to go to sleep). I woke up and was extremely confused. I was conscious but sort of in a daze. I walked around my room for a bit doing kind of uncontrollable things like picking up random things for no reason. I went to tell my dad and I started to cry for no reason and couldn't stop. My head did hurt but it was not extreme pain. I went to my general doctor and she sent me to the Emergency Room. They diagnosed it as 'possible post-concussive'. After 24 hours, I was still quite confused, but it got better after about 4 days. (My neurologist later told me that he thought it was unrelated to the amusement park.)

After about 4 months, I went for a neurologist appointment. I was really curious as to why those things happened so my neurologist sent me to an epilepsy monitoring unit. There, they took me off Carbatrol and I had the sleepwalking problem quite a bit and one tonic-clonic seizure. A new neurologist came in and said that the sleepwalking was a 'type of seizure'.

I was having some difficult side effects with Carbatrol (drowsiness, really, really bad hair loss) so they decided to try to switch me to Keppra. After about a day on Keppra, I had a really bad panic attack. I was thinking I was going to die and there was more uncontrollable crying and paranoia and slight hallucinations. I went to the hospital and they said that Keppra can make a certain percentage of people have panic attacks like that. They took me off Keppra and put me back on Carbatrol.

A while later, after another neurologist appointment, they decided to try to put me on Lamictal. I spent about 11 weeks weaning off Carbatrol and increasing my dosage on Lamictal. Three days after I stopped Carbatrol completely, I started having really bad anxiety, it was like a milder version of the panic attack but with most of the same symptoms.

My neurologist told me that 'Oh, it must have been a coincidence' :ponder:
I really doubted that but I went along with it. He told me that I should try decreasing my dose of Carbatrol more slowly.

That was 7 weeks ago. Two weeks ago, I was only on 100mg of Carbatrol/day. I started having anxiety again but now something different started happening: When going to sleep, I have crazy, random thoughts. They aren't bad or anything, just completely random and uncontrollable. Sometimes It feels like I am trying to think of something and I'm visualizing something completely different.

I get moderately painful shooting head pains in random places in my head sometimes. I find myself tapping my foot or my hand uncontrollably. My concentration is waay off (when I read or write something I'll skip over words and letters, I start doing something and lose interest). My memory is definitely worse.

I called my neurologist and he said ignore it and see what happens. :pop:

I stopped taking Carbatrol completely on Sunday night. Now I'm taking 250mg of Lamictal/day. My big problem now is that I can't sleep at ALL. I try to get to sleep, have the random thoughts, ALMOST get to sleep, and wake up suddenly like someone would wake from a nightmare. My heart beats really fast. I'm planning on either going to the hospital if I can't get to sleep at all (I would call my neurologist, but I don't have one at the moment, I just switched insurance because I turned 19 on 10-30 and haven't arranged one yet.)

Sorry about the long bio, but I just want to see if anyone else has any of these problems or knows what my problem could be. I would really liked to get this fixed, whatever it is. To me it doesn't really sound like a form of epilepsy, maybe a type anxiety disorder...?

Thanks

- Emily
 
Yeah, I do sleep walk on the occassion, but Ive never really considered it a seizure..and I dont think I have ever told my Neurologist about it.

I also do weird things, and Im half conscous like you. I actually do believe its sleep walking for me .. i guess.

I once came to opening and closing the shower door.. that was a few months ago. I have woken up at the fridge doing the same thing and almost walked out the door but i realized or came around....as a kid my mom once told me I went in her room and was crawling around the floor looking for a pencil case...

I guess it could be a complex partial seizure ? I am not sure....

It definatly sounds like you have anxiety, if your neurologist writes it off and doesnt entertain it, maybe she doesnt think its neurological or something she can help with, and perhaps a psychiatrist coud help you with that.

My neurologist wont entertain certain thigns i bring up to her because she says Its for the psychiatrist. So I say .. ok... and trust her.. and do that. I only bring it up incase its anything seizure related.
 
Yes

Hi Emily,

Yes, I have done the whole sleep walking thing and sometimes during the day. For me, it's a seizure. Simple partial seizure. An example during sleep: Take a small seizure and get up and walk around (no memory or vague memory). My husband tells me in the morning. During the day: One day I went out to lunch with my boss and in the deli I had a seizure (small one) and I opted to get up and walk the perimeter of the deli intensly investigating everything on the shelves. My very next memory I was back at work sitting at my desk wondering, "What happened? The last thing I remember was sitting in the deli eating a sandwhich?" My boss told me what happened. He stated I was sitting their eating a sandwhich and all of a sudden my whole demeanor changed and I just got up and started walking around and when I sat back down he asked if I was O.K. and although he said I responded he said I was just not myself and he knew I was out of it.

The crazy random thoughts when going to sleep. I have this now and this is an aura (warning) for me that I'm going to seize in my sleep. My eyes are closed and I get random pictures flashing very fast behind my eye lids and I can't make any sense out of them because they're just so random and they go so quickly. My thoughts are trying to capture them but again, they're too fast and random which ultimately is making my thoughts go quickly.

Lamictal = Absolutely causes insomnia. Concentration problems I think most of the meds cause that. I remember (Lamictal) having to ask my mother to read something that I wrote since I wasn't sure if it made sense. EVERYTIME it made sense, so chances are you're making sense too. The memory, sorry to say but it appears to be a given with just about every drug as well as the E itself.

The insomnia sucks yes, but my concern for you at the moment are the sleep walking and random thoughts because for me those are sure signs of seizures. Perhaps you can find a neurologist tomorrow and get an appointment. DON'T WORRY though since I get these all the time and worrying is not going to help you, but do find a neurologist.

FEEL WELL and try to sleep. Perhaps some warm milk (I think that induces sleep).
 
Hi Emily, welcome to CWE!

The sleep issues (and possibly the anxiety) are probably caused by the Lamictal. If you can hold out until the transition is complete from the Carbatrol to the Lamictal, and give it a month or so after that, you should find that sleep issues start to improve. I had the same sleep problems (and very vivid dreams) when I went on Lamictal a year-and-a-half ago, but now I sleep fine. Your headaches may also be Lamictal-related. Again, those should go away once your body has adjusted to the Lamictal. In the meantime, acetaminophen (Tylenol) seems to work best against this particular headache.

If your side effects persist, or become unbearable, definitely contact your neurologist to let him know. Keep a journal, if you don't already, that tracks the side effects and any other aspects of your seizures or sleepwalking -- this may help the neurologist to understand what's going on. It's also a good idea to keep track of things like general sleep patterns, nutrition/hydration/metabolism, hormones, exercise/activities, and other stressors that may potentially be triggers for your seizures. If you can isolate a stressor, you may be able to help lessen your seizures, or their frequency. For instance, some rides at the amusement park might have been a trigger (despite what your neurologist said); other folks have reported a connection between that and subsequent seizures. Or it might have been certain lights at the park. Or dehydration. Or too much sugary foods. Or a drop in blood sugar (which is a trigger for me). Or a combination. The best way to try and find out is write things down.

The seizure-like activities (sleep-walking, foot-tapping) sound like signs that your meds aren't being 100% effective. This could be due to the transition process. It's hard for the brain to adjust to changes from these very powerful meds, and Lamictal needs to be transitioned on to slowly, so the process can take awhile.

Warm milk can help with sleep, and also melatonin (a supplement that many people take to deal with jet lag). Good luck, I hope things settle down for you soon.

Best,
Nakamova
 
Hi Emily, Welcome!
I was a sleepwalker from the time I could crawl out of my crib until age 13. I started having seizures about a year and half ago. When it started, I told my doctor it was like extreme sleepwalking! I would drive, do work, cook/eat, and have no memory. They did EEG and MRI and saw I was having seizures. I have both simple and complex partials. My complex partials are like being on autopilot..I do things I would normal do and have no memory of doing it. I have been on Keppra and it has helped me a lot. I am still having about one seizure every 5-6 months, so they are still working with getting my meds adjusted.
Keep on your doctors to understand your symptoms and getting you on the right med and dosage to get your seizures under control.
jenn
 
Back
Top Bottom