Totally Exhausted!

[Koda1021]

Hello everyone!
Just a quick background on me...after my health insurance (through work) switched to a high deductible plan, and after several years of trying to find a good neuro, I will confess that I gave up and went off meds completely.

I know, not a good idea, so last month I finally gave in and found a new neuro. He was actually someone I'd seen before (and liked) and with my husband now retired, we decided it was worth the one hour drive to him.

He put me on Vimpat. 100 mg twice a day to start. So far, no tonic clonic seizures (most of my seizures seem to happen at night). But, I feel "worn out" if that makes sense. As an example, I went to sleep on Saturday at 11 pm, and woke up at 9 am and yet I felt like I'd gotten no sleep! I do have very vivid dreams and nightmares, and have always had trouble falling asleep quickly no matter how tired I am.

It's becoming frustrating mainly because I find myself wanting to nap all day long, and not feeling refreshed if I do nap. I have a secondary issue of being somewhat overweight, but for over two months have been reducing my calories and working to lose weight. So, I don't have a high-fat diet or a diet that would encourage my body to slow down.

I have my next appointment next month, I've been on Vimpat nearly 2 months now. I've been on so many meds, I don't want to knock the Vimpat if ultimately it does work well for me. At least with it (unlike other drugs) I don't feel quite like a zombie. I do have vision issues with it (which I saw was a side effect). The worst thing, like I said, is how tired I am all the time. I find myself feeling very depressed and very anxious/angry, which I can't tell if it's because I feel so tired, then I get mad at myself because I don't want to be active, or if it is a side effect in and of itself.

I work from home, so I do feel more pressure to always be "on call" and I honestly haven't taken a real vacation or time off in a long time. So, maybe it (honestly) is my body saying I need a true break from everything. But, it just feels strange that no matter what (even after weekends off) I feel so worn out and tired.

Any insight would be greatly appreciated!!!

 

[RanMan]

Koda

You mentioned that most of your seizures are at night, plus you've gained some weight.
Do you sleep on your Back? Do you snore when you sleep?
THS could be causing an obstruction of air getting to your brain and causing seizures in your sleep.
You may have several seizures in your sleep and not know it.
This causes you to wake up feeling tired ad unrefreshed, headache, irritable, racing heart (which could lead to stroke or heart attack, etc.
This is called Sleep Apnea.

Mention this to your Doctor and he can arrange for a sleep study to check for Sleep Apnea.
This usually happens in older, sghtly overweight ppl.

 

[Porkette]

Hi Koda,
When I first started taking vimpat I felt tired but after 2 wks. the feeling went away and the drug has reduced my seizures greatly.
I'm wondering if maybe you aren't having seizures in your sleep or you may need a sleep study done. My Epileptologist ordered a sleep study done on me along with an e.e.g. and e.kg. all at the same time and they found I was having seizures in my sleep 1-2 hrs. before I would wake up in the morning but since I was put on vimpat that stopped.
You should keep track and take note if you feel more tired in the morning on certain days and also try and note if you have a headache when you wake up.
You should consider the new treatment of listening to ocean waves or rain drops coming down to see if that helps you sleep better. You can get a lot of that right on You Tube. Wishing You only the Best and May God Bless You!

Sue

 

[Nakamova]

Hi Koda --
I haven't tried Vimpat, but I had a similar experience to Sue's when I started Lamictal -- my sleep was affected for the first two or three months, and then that side effect went away. I hope that happens for you.

If over time you continue to have the side effects along with good seizure control, perhaps the Vimpat dose could be reduced slightly to see if that will help.

 

[Koda1021]

Thank you for the insights, everyone! Ranman, yes, I do snore and there is a good chance I have sleep apnea. I haven't done a sleep study yet. Right now, with the high deductible of my insurance plan, I have to organize my costs with meds being the most important. My doctor was great, in that he gave me 2 months of samples for Vimpat to get me through until my next appointment with him, so I'm planning the cost of the med (which from what I'm seeing is about $800 a month). So..I'm not too keen on doing the sleep study just yet.

Truth is, a lot has changed with gaining the weight. To explain, I had lost 90 lbs. a while back and kept it off for 15 years. But, the stress of moving to a new state, finding a new doctor, my insurance turning to a high deductible plan..I allowed myself to give in and stress-eat so much of the weight crept back. That is when the snoring began, too. So, I see a clear link to the weight and my general well-being. Working from home, less interaction with people, all of it just played into me feeling more depressed.

That said, I'm doing what I can "behind the scenes" before blaming E or the meds. I'm back to watching what I eat, and I already a big difference in my energy level. Something interesting I'm noticing as well, is that getting LESS sleep is making me feel better. If I sleep about 7 hours, I wake up a lot more refreshed than if I'd had 9 or 10 hours.

So, it's a learning process. The Vimpat, like I said, doesn't make me feel like a zombie (first med so far!) so I really want to give it a shot and so far, no seizures. So, I need to be patient and not let everything get to me.

Thanks again for the support!!

 

[valeriedl]

After I have a seizure I'm usually very tired and will just pass out for a few hours or longer, I just can't stay awake. Depending on how bad the seizure was this might last for days.

I've been on quite a few meds over the years. Some of them I wouldn't eat at all and others I wouldn't stop eating. My neuro would either reduce the dosage or have to take me off the med to make things better.