sleep seizures or exhaustion?

[Loopy Lou]

I wasn't quite sure what to title this, but I'll explain a bit of what's going on.

Since I started Tegretol in July I've been sleeping loads. I didn't mind too much as I'd had terrible insomnia whilst on my previous med Vimpat so I was glad to get a decent nights sleep even if I did have to nap in the afternoon too.

Since about the end of August (when I got to 600mg Tegretol as well as my 3000mg Keppra) I've been having the odd morning where I wake up between 7-8 am but am so tired all I can do is look at the time and then it feels like I sort of pass out again for another few hours. This can be after a good nights sleep too (8-10 hours). Then I can wake up again another few hours later and do the same again.

Yesterday, again I woke up at half 7 and fell asleep again in the middle of replying to a text. I woke up again to 3 missed calls from work but couldn't focus on screen long enough to call them back. I then got woken up again at 2pm by my landlord calling to say he'd been banging on my flat door for ages as I had an appointment for some repairs. I never heard a thing until my phone rang! This time I managed to wake up enough to get up, though they couldn't believe I was still in bed at that time. I think he thought I had a man in there!

I don't know if this is just tiredness caused by the meds or not. When I fall asleep its completely unintentional and unstoppable, more like passing out. I always sleep with my phone next to me and its rather loud so it would normally wake me up with quite a start if it rang.

I'm not sure what's going on and its a little worrying. Could I be having seizures in the morning and just not remembering?

[Loopy Lou]

Oh yeah, I should point out that I have been having more seizures lately, but I don't know what this is the mornings is.

[Chel]

I went through something similar until recently, Lou, caused by my anti-D. We've changed it!

When is your 400mg dose of Tegretol? Morning or evening? I'm also on 600mg, and take the two tablets in the evening so I sleep well, as I was having a lot of nocturnal szs. I'm bouncing out of bed in the morning - back to my usual self! Then one tab in the morning.

Your problem definitely sounds medication-induced.

[Chel]

Just adding that my doctor says if any change occurs at the same time as a change in medication, then the first thing to look at is the medication. Sounds too logical and simple, I know... And it could just mean a medication clash, rather than an individual medication.

[Loopy Lou]

I have 200mg Tegretol in the morning and 400mg at night as my tonic clonics are mainly at night time. At first I enjoyed sleeping too much after the problems I had on Vimpat, but its a bit weird that I'm falling asleep so quickly and deeply, and for so long.

Hopefully I will be talking to my e nurse tomorrow, think its about time I saw the neurologist but I have to go through her to get an appointment.

[Chel]

its a bit weird that I'm falling asleep so quickly and deeply, and for so long.

Falling asleep quickly and deeply is great (I'm enjoying that part!), but it's when you can't get up in the morning, or can't stay awake during the day that you have a problem.

I was oversleeping in the morning, had no energy during the day, and if not forced to be at work and with commitments at home, would sleep all day every day - as you've described in your first post. That's not normal. As I say, for me, it turned out to be my anti-D, so we switched to a different one, and that's working out much better.

Hopefully, the E nurse can help you, as the last thing you need is the landlord on your back! Also, if you have a job, you don't want to lose it, or be seen as an unreliable employee.

ETA: "Somnolence" is the side effect.

Good luck!

[Loopy Lou]

Yeah, I've had to reduce my hours at work to 16 a week and I actually missed a day the other day. Mind you, that was because of a seizure. If I'd had that seizure half an hour earlier than I'd be holding my 7 month old nephew, an hour later and I'd have been at work with disabled adults. I lost nearly a full day to sleep that day but I guess that's pretty understandable. Felt rotten about missing work though.

If it carries on like this I don't see how I can keep working. I'm struggling as it is.

[Nakamova]

Hi Lou, I agree with Chel -- your meds are probably having a cumulative effect and knocking you out. Maybe you can do a little tinkering with when you take the doses and how much so that you are less sleepy in the morning. I know when I was on Dilantin I would take it once a day with dinner to avoid being tired during the day. With the Lamictal I'm on now, I take 4 pills in the morning at 7am, and 3 pills in the evening at 6pm -- that seems to work to make me sleepy but not too sleepy.

[Chel]

If it carries on like this I don't see how I can keep working. I'm struggling as it is.

Yeah, I can understand that. In a similar situation myself. Changing the anti-D med, and going up to 600mg Tegretol at least has improved my quality of life enough to give me some hope. I hope by fiddling with your meds, and improving your QoL, you can do same.

{{{hugs}}}

[Loopy Lou]

Do you think it would make a difference if I took my evening dose of Tegretol earlier then? I tend to get sleepy about an hour after taking it though, wouldn't want to be that dopey at work (i always work evenings up til about 10pm).

Or maybe I could try taking 200mg x3 times a day rather than a double dose at night.

Thanks guys, even knowing that other people have been there helps me feel better. Sleeping all the time makes me feel lazy even though I physically can't help it.

[epileric]

Also, something I feel I should mention (in case you don't know) is that you should always take it with food or milk because if not then taken long-term it can cause stomach problems.

[Loopy Lou]

Also, something I feel I should mention (in case you don't know) is that you should always take it with food or milk because if not then taken long-term it can cause stomach problems.

No, I didn't know that O.o I'll definitely bear it in mind though, thanks!

[Chel]

Do you think it would make a difference if I took my evening dose of Tegretol earlier then?

I take mine a couple of hours before bedtime, but am usually at home pottering about by then. What time you take it would depend what time you want to go to bed and what time you expect to get up. I get about 9 hours sleep on my evening dose, so time it on what time I need to get up in the morning.

[Loopy Lou]

Well, the nurse just called me back and we had a chat, she's going to try and find out when my next appointment is as apparently I'm not on the list as waiting for a 6 month check up. Now there's a surprise, this onnnlllyyyyy happens every time =\

Ended up nearly crying down the phone as I went on about my weight gain, falling over, dizziness and sleepiness. What a wuss I am. Anyhoo I finally worked up the courage to call and tell them that Tegretol isn't working, so that's the main thing. She asked if I'd had blood levels done since starting it, and I don't think I have.

[momof3boys]

For 12 years I was on Keppra 3000mgs and Carbatrol (another form of Tegrotol) 1200mgs a day. I took 1500mgs of Keppra and 600mgs of Carbatrol twice a day, when I woke up in the morning, and right before going to bed at night. I recall being tired alot. Very easily would I feel like I want to take a nap. My mom always wondered why it was that I could sleep for at least 12 hours a night, if not more! I could go to bed at 10pm, and wake up at noon the next day and still feel tired! Looking back now, it probably was from so much medications I was on at the time. Once my dr took me off the Carbatrol, I noticed a huge increase in energy and didnt feel sluggish.

I would be bringing this up to your dr or call the nurse to let them know whats going on. I would hate to feel tired like that all the time!

[Chel]

Do you think it would make a difference if I took my evening dose of Tegretol earlier then? I tend to get sleepy about an hour after taking it though, wouldn't want to be that dopey at work (i always work evenings up til about 10pm).

As I'm absolutely hopeless with numbers, I worked out a good way to calculate when to take the evening dose of Tegretol: Take it 12 hours before you want to wake up. That allows for it to start working, your sleeping time, then waking up. I realised it's exactly what I do.

I hope that fits in with your work shifts and lifestyle.