Is anyone else always tired? zzz

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lisajane

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Hi All,

I am new to the world of epilepsy. I only got told I had epilepsy the other day after months of doctors/hospital appointments and tests.
I have black outs which sometimes make me collapse.
Recently I've had a lot of time off for work...my boss was not happy :(
I got no support so ended up leaving after being signed off work for a few weeks after a bad collapse.
I feel tired all the time...ill sleep for 8 hours...but then wake up feeling tired.
Is this normal for someone with epilepsy?
Or is it just me?
Any help or advice would be great...such a scary time, I have so many questions and no answers :(
 
Seizures can be exhausting on their own, and the the meds can make us tired too. Another potential cause of fatigue is if you are having seizures at night, or otherwise sleeping poorly. Have you had a sleep study done? That might indicate how restless or restful your sleep is and if there are any sleep issues (like apnea) that can be playing a role.
 
Nakamova is right. Anti-seizure drugs can be a challenge all in themselves.

My meds definitely make me tired and drowsy, but it also begins to feel normal after a while. Caffeine can compensate somewhat but I would caution against it.

What medication are you taking?
 
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Hi lisajane,
Welcome to CWE.

As Nak has said both the seizures & meds can make you tired.

I used to mainly take auras & complex partial seizures & I found that after I had a complex partial I would usually feel really tired so would have to have a nap.
The meds I am on at the moment don't affect my sleep but I have been on other epilepsy meds that affected my sleep. The worse med I had to take was Neurontin which not only affected my mood but also made me extremely tired to the extent where I was having a nap every day & still going to bed early.

Have you been prescribed any meds yet?
 
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Hi Lisajane!

I am also new to the world of epilepsy and I am having the same trouble. It seems like no matter how much sleep I get, I am ALWAYS tired. I didn't start taking AED's until sept 2011 (zonegran) and added lamictal last month. But chronic fatigue has been a problem for years. Even before my first seizure in 2009. Have you had this problem for a while (the tire all the time) or did this just start?
 
Hi LisaJane. Welcome here to our forum. I'm Teresa. Lamictal can give you a rough nights sleep. I have been on that. And zonegran is one of them I am on now. When I first started having seizures I was a freaking walking dead. But I was only 10. It might just need to be adjusted. And or changed. But talk to your doc anyway. They should help you along.
 
Thank you all for your messages it's so lovely to be able to talk to people who understand :)
I'm not on any medication as of yet :( the hospital are doing more tests before they'll put me on any! It's so frustrating :( I'm Planning on starting a family soon too which worries me
As I've been hearing all sorts of stories about epilepsy med and pregnancy!
X
 
If ur goona get pregnant, just do it the right way.Knowing all your side effects and get an epileptologist. Teresa
 
I have to take a nap every day. If I go a few days with out it I'll usually end up having a seizure.

When I do have a seizure I'll fall asleep after it and sleep pretty much all day the next day.

I know that you said you aren't on any meds yet but I was on one medicine where all I did was sleep, I don't remember which one though because I've been on so many different ones. I didn't get out of bed at all, not even to eat. I think my parents actually brought food into my bedroom just to get me to eat. I lost a ton of weight at that time. The neuro took me off of it because of the side effects.
 
I have had epilepsy for eleven years now and I am constantly tired... I think it's something that you just need to adjust to. Try not to compare yourself to others who may not have seizures, if you need that nap, take it! Your mind and body are going to love you for it. If you are sleepy, sleep... you need it seizures are very taxing on the body, i sleep for almost two days straight when I have seizures. Do what is best for YOU and what makes YOU feel healthy. Good luck :)
 
Epilepsy doesn't always require medication. If you have symptomatic epilepsy (epilepsy with triggers, not always/rarely random) it can be a bit easier to manage. depending on how bad it is you might not NEED to be on medication. I suggest you ask the hospital to test you for photosensitivity. Good luck with the family! Best of wishes!
 
actually yes,
I am tired, very tired, and have been for a bit several weeks, and my seizures are getting worse. It is affecting my mood and personality and relationships.

I am thinking of going to my docs and changing my med cocktails
 
Thank you all for the replies. It's put my mind at rest now that I know being tired is quite common. Guess its just one of those things :)
X
 
I'm always tired too. Husband doesn't want me to take naps anymore he thinks it effects my nightime sleep. I never sleep well.
 
I'm not sure . I was dxed when i was younger with epilepsy but since then I was dxed with non epileptic siezures. i'm going to another neuro in june so I'll see what he says.
 
I'm beginning to think sleep apnea is common for us.
I have it too.
Oddly enough, there are jaw exercises that work for me. There other exercises as well that help.
Unfortunately, I didn't bookmark it, and I don't remember what it was.
 
veteran

I could write the book on tired and fatigued. Dilantin over 30 years now. Am going to try to get off with the help of a doc. - long term side effects are doing a number on me. I took Dilantin during my pregnancies, I have two healthy grown children and grandkids. Just be vigilant, and keep in close proximity to your doctor and hospital. Be your own best healthcare advocate, and you will do just fine! Eat organic as much as possible if you can, and get your rest. Good luck!
 
I've been on Dilantin over 40 years also. I was diagnosed when I was 10 so I don't really remember what it's like to "feel normal". It's been mostly by trial an error that I've determined that what I'm feeling is the effects of overdosing on Dilantin.

Luckily I have a wonderful doctor (gp) who handles my meds. I've been tracking my levels since 1998 because Dilantin can fluctuate so quickly. So when I finally realize I'm way off balance, feeling dizzy and that it might be my Dilantin spiking again, I get a blood test and talk with my doctor about readjusting my medication.

I get horribly lethargic and have an all encompassing nervous feeling that keeps me awake but prevents me from doing anything useful. I'm going through an overdose now, realized it on 2 weekends ago. It was so bad that for the first time I didn't want to take my Dilantin my brain shouting at me that it was making me crazy (kind of weird to have to fight my own brain). Because I've kept track of my levels and dosages I was able to ease back to a dosage level I had been at before. When I talked with my doctor he said I did the right thing especially because we've been through this before.

When I explained the nervous feeling (my nerve endings are always tingling - that "pins and needles" feeling), doc said that is one symptom of Dilantin overdose. So is feeling lethargic.

My hands and feet are constantly cold - I'm wondering if that's a symptom.

My horses are my passion but when I'm overdosing it throws my balance off. And it can be a bit dangerous being with my exuberant boys when I can't trust myself to move quickly and precisely. Which only adds to the bummer.

I'm so glad to have found you all to discuss these things with. I used to think I was just stupid with all my eccentricities. Now I realize they are epileptic eccentricities. And some of them are simply effects of the medicine.

Enjoy the moment, it's all you have!
 
My hands and feet are constantly cold - I'm wondering if that's a symptom.
Click to expand...
Increased sensitivity to cold could be a sign of low thyroid, and/or a circulation problem. You might want to bring it up when you see your regular doctor.
 
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