Is anyone else always tired? zzz

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Dolores

I appreciate your post, it is good to hear from a long term Dilantin user to compare notes. I too have the symptoms you are talking about. I am going to get blood work done this week. My stamina is also compromised, along with fatigue. Nakamova is right about the low thyroid. I have been dealing with that for about 6 years now. What a ride, give me epilepsy anyday! Seems our endocrine systems are taking a hit these days with all the chemicals we are surrounded by. My energy level was always pretty good until this came along, even with the Dilantin. Short of living like a monk, I am trying to alter my lifestyle to fit a compromised thyroid.

I wanted to ask you if you take capsules or the liquid? Just wondering, I am on the liquid for the rapid absorption into the bloodstream.
 
i am ok with nap time, and them pill time, and then nap time
 
Hi Lisa Jane,
Welcome! I'm Tina. Yes The tiredness comes with it I'm afraid to tell you. The drugs just make it worse. Eat for good nutrition it helps I have found. Stay hydrated that helps too. Take naps. I have found that helps me. Stay on a regular eating and work schedule if you can my work schedule has really taken me for a loop lately since they went to this new computerized scheduling program called Kronos man I am not liking it at all (sorry if anyone works for this company it was not made for retail floor schedules) It is not customer service friendly in my opinion. A computer can never in my estimation take over a human brain decision in my book. So my advice is eat well, journal seizures/symptoms for doctors, take naps, schedule things if you can at work if possible (i know this one might be harder) just do the best you can day by day we are here to help you and support you : )

Tina : )
 
I could write a book if I was awake enough and could see straight. I would check on the hands though.
 
well i go to bed tired and wake up like i been awake for days for yeah i have tiredness everyday with headache! i dont know if its tabs but im guessing it is :(
 
So I finally got diagnosed today. I've been put on Lamotrigine (not sure if i've spelt that right).
Anyone else on this medication? Any advice at all?
Thanks x
 
I'm on Lamotrigine. It basically works okay for me, but there was an adjustment period of a few months. Initially it made me speedy-perky during the day and gave me really restless sleep/vivid dreams at night. I would get mild but persistent headaches (Tylenol helped), and my hair was falling out (though that could have been a delayed result of problems with the previous med I was on). Those side effects went away. I still have issues with blurry vision -- I squint a lot more more, especially in the late afternoon -- and I have dry eyes and mouth. My sleep is fine now. I tend to feel a little weary throughout the day, but it's not too bad. And I have complete seizure control (4 years and counting). My Lamotrigine dose is 150mg/day.

The recommendation with Lamotrigine is to ramp up very slowly, in small increments. This is to minimize the risk of getting a rash from an allergic reaction. If you do get a rash it's most likely harmless, but since in very rare cases there can be a more serious rash called Stevens-Johnson, see your doc right away if anything shows up.
 
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I once took Lamictal (lamotrigine). It didn't help control my seizures, but I did feel better emotionally. That is one drug that is also used as a mood stabilizer.

Good luck.
 
I too experience severe cold hands, feet and face. I keep gloves by the tv remote, also a pile of blankets. It is usually around 7pm, after dinner. Told it is partly circulation problems, on blood pressure meds, but have erratic beats also. On Dilantin ext, 100 mg. 5 per day, plus Baclofen 4 x day. Still having seizures. Good notes to doctor help, but most won't read them all, only want a synopsis, then appear to doubt the reporting. What can we do? Tired all the time from seizures and little true sleep. Can we take sleeping pills with e. meds?? I need rest.
 
I think I'm having problems with Lamotrigine. Every time I try it, my asthma flares. One of the side effects is that the throat closes. I do cough a lot, and there is a dry irritation at the lower left side, like a sore throat.
Yet the doctor wants to ramp it up. I do forget to tell her that I have taken myself off of it, and why. :paperbag:
 
Do let her know -- it's definitely your choice as to whether to take a given med, but it's safer to have your neurologist know what that choice is.
 
I keep a note pad in my shoe box of meds. Then I grab that and elaborate on any problems typing them up neatly, and take a copy of that to my dr. He has it in his records then, no excuses from him. Still we all missed a drug interaction.

There is a seizure with coughing, ends abruptly. I have that sometimes. Can't get air in.
People think I am choking, embarrassing in public. I forgot to write that down for several months. Make sure you find a place to take notes when something occurs.
 
Lamictal is a drug that you can not get off and on again. I understand what your saying because I could not be on that drug for anything. It caused me to have more seizures and I could not sleep. But it is a drug you have to get on very slowly or get off very slowly. If it were me I would call my doctor and tell them whats up. They don't have to like it. Just tell them whats going on and they will have to tell you. Just tell them you couldn't live like that so you took the inititive. Good luck
 
I'm on topamax and keppra I'm constantly tired and fatiuged everyday no matter how much sleep/naps I have during the day or night I get, I''m still in the process of getting a proper diagnosis not just PNES, getting a 2nd and 3rd opinion in the next few weeks here hope you can find some good answers on here the brain trusts on here are good people that know alot and have helped me out a lot!
mike
 
Hi Lisajane
Like everyone I feel tired a lot, but also I have notice that I become tired very easily. I feel really frustrated that a day out exhausts me so much that I am a zombie by dinner time, I am unable to work full time because I am too tired after a day's work.
Currently I am on Lamotrigine, 150mg/day but may increase it a bit.
I go to bed feeling tired, I start to zone out some evenings and have to be put to bed like a child. Some nights I sleep lightly, as if I am partly conscious but I also sleep like I am dead. I take a while to awaken in the morning and usually have a headache. It reminds me of what a hangover feels like.
Thank you for your post, I was feeling alone with being tired all the time too.
 
gigi said:
Nakamova is right about the low thyroid. I have been dealing with that for about 6 years now. What a ride, give me epilepsy anyday! Seems our endocrine systems are taking a hit these days with all the chemicals we are surrounded by. My energy level was always pretty good until this came along, even with the Dilantin. Short of living like a monk, I am trying to alter my lifestyle to fit a compromised thyroid.

I wanted to ask you if you take capsules or the liquid? Just wondering, I am on the liquid for the rapid absorption into the bloodstream.
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Thanks for the thyroid suggestion, I will check with my doctor on that.
I do remember having cold hands and feet back when I was in college so it's something I've just lived with not realizing it might be unusual.

I take Dilantin capsules. My dosage used to be 300mg 4 times a week & 400mg 3 times a week. With my recent overdose situation I'm now taking 300mg 6 days and 400 mg 1 day.
I also take 90mg phenobarbital.

Seems like I've had epilepsy all my life - for me there is no memory of how I was before dilantin & phenobarbital. So I tend to forget that they may be messing up my system. That's where keeping the dosage & level history helps me. I can look back and see where I have been level wise and what dosage I've been at. One doctor wanted to change my dosage drastically and, based on the info I had I refused. My current doctor has no problem at all with discussing dosage levels with me.

I too am glad I found this site and can talk with others about life as an epileptic.

Enjoy Life!
 
gigi said:
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!
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Thanks for sharing that you were on the dilantin with your pregnancies and that your kids and grandkids are healthy! I am new to CWE and looking to start a family but am terrified of the side effects that these meds can have. I am on keppra but want to make sure that what i am on is the best one for the health of my babies. Thanks again for sharing:)
 
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