Sleepiness

I just wanted to check with others about sleepiness.  Every time I think I can't get any more tired, it seems I do - I understand that's part of Hep C.  The lactulose and xifaxan seem to be mostly keeping HE under control (there are some ugly hours, though).  But I can't stay awake. 

I'm walking each day and doing a bit of yoga .... that is my only exercise, apart from trying to stay busy with small projects.  If I stop moving, I fall asleep.   It's so frustrating because there were a couple of weeks recently that I had good energy and now it's back to this.  No matter what, I try to get out and do things at least every other day.  I'm extremely cautious about driving and do not go far.  Was able to host a small early Christmas dinner for 8 but I didn't move for two days afterwards.  Not so wise.

I do better with people around although I have fallen asleep amidst family get togethers.  It's worse after I eat so I'm eating very small amounts right now.  I have switched from herbal tea to regular tea hoping the caffeine would help.  It doesn't.  Am continually monitoring for signs of depression ... my instincts say it isn't although it's a constant battle to keep that at bay.

How do others deal with this?

 

Ziffle ... yeah I tried cutting back on the lactulose ... not my best move! Learned my lesson. I've slowly increased my vitamins one by one in recent months with good results ... except for B's. When I added them, they made me nauseated ... and bloated. I tried them for about two weeks with and without food, but couldn't tolerate them. I do take a multi my hep recommended, extra vitamin D, E, C and fish oil. Those are helping with skin troubles and mouth sores and my hair is growing back a bit - it was falling out for a while. The multi has B in it but not much. Was thinking of adding barley greens?

Even with a nap I just keep falling asleep. It was you that gave me the idea to keep moving as much as possible and I do. If I nap though I sometimes sleep 2 hours, then sleep again most the night. Or I sleep a few hours, wake for a few hours, and repeat, ad nauseum - that's the cycle I HATE. When I'm in it I'm not wakeful enough to recognize I need to get moving. The other day I nearly fell asleep at the table after breakfast. One day I fell asleep while sitting & eating an apple. Last night I fell asleep immediately after supper and left the oven on for three hours.

I will keep trying though - am going out today so will look at Vitamin B in a different formula or smaller dose or something. I'll ask the pharmacist - they're pretty helpful.

You've given me a direction to pursue ... so glad I asked. THANK YOU!!!! I'm learning ... so much of this is tweaking and fine tuning. It's a delicate balance and hard to maintain ... and harder still to know when to speak up. Thanks again.

Deb, Hep C and grinding fatigue...evil twins...tied together forever I fear. Though Mike is post transplant and doing pretty well, he still naps every afternoon and if he has been very busy may fall asleep again close to dinner time in his recliner. And he sleeps pretty well at night also...with meds a few days a week. Otherwise he is up every hour frumping about....fretting, etc.

Mike's Hep C is uncontrolled post transplant and his Viral Load is nearly 4 million. So...he is tired all the time.

He has added walking to his routine, which makes him tired, but he feels as he pushes the time and speed of his walk, that he is feeling "good." Though tired. Always.

Hugs,

I alternate between ambien and 1 mg. of ativan. Ativan isn't a sleeping pill, but it stops my mind from speeding up, when trying to fall asleep.

Fatigue, I know thy well... I was told to stay away from caffine by hep doc and was never a coffee drinker anyway, so I don't use stimulants. What works for me best is just listening to my body. If I am tired, I sleep. I have stopped worrying that "normal" people are up by 7am and in bed by 11, or something near that. I go to bed for the night when I am tired, 4pm, 7pm, or 2am and sleep until I awake. I very, very rarely get fatigued during the day anymore, unless I "have" to get up for an appointment or something and don't get enough sleep. I know not everyone has the luxury of making thier own hours (and a wonderful husband) that this schedule requires, but honestly, you need more sleep now that you are ill, accept it and try to get as much as possible when you are tired.

If I have a big day scheduled (going to the doctor is enough to constitute big), I know ahead of time I will be whacked the next day and never plan any other event the day after.

For sleeping pills, I have not had alot of sucess with them, they dont work to put me to sleep, just make me exausted the next day. I have used Melatonin with good results though, you could try that. I would start with 1 or 1.5 mg.

Sleep well,

-K

Oh Mae Be Here ... I shouldn't laugh but that was pretty funny! And not so funny for you I'm sure. Rather frightening and painful.

Kiersten - my pharmacist told me not to take melatonin as did my dr. They said it's hard on your liver.(??) I don't really have too much trouble sleeping at night ... only when I get into a bad rut of 4 hours awake, 4 hours sleep, etc. Pretty hard to function in the real world with that schedule. But you know, it's nice to hear that you allow yourself to sleep when you're sleepy. Sometimes I just don't allow enough time for my body to adjust ... I drag my body around expecting it to do what it used to ... and get mad when it won't. That's not just liver disease, though, that's getting older, period.

David - Ativan is a no no for me. Because of HE - they used to have me on it because it was so useful for evening out the cycles but as soon as HE hit they stopped ... apparently it makes it worse.

Ziffle - I totally agree with you about vitamins!!! I wouldn't be feeling as well without them and it was the hepatologist that really pushed for them.

I did pick up a different dose of Vitamin B complex ... and so far so good after two days. Even a wee bit of improvement would be great.

Funny story ... I could blame it on HE and sleepiness but ... probably not. I'm in a new condo and this is my first year putting up lights here. So for the last few nights when I was turning the lights on, I was actually turning them off. I realized it this morning when I pulled up the blinds and they were on. This is a plus 55 complex ... so I'm sure my 80 year old neighbors were wondering if I knew night from day. Oh Gawd!!!

I did want to wish everyone a Merry Christmas ... hope it's filled with peace and better health.

Hep C&Cirrhosis,
Sorry about that. I didn't begin taking ativan until a couple of years after my transplant, which means a couple of years after my HE. Prior to that, I used ambien. Now, I use ativan most nights, and ambien a few times each month. I have found that both meds stop working after a while. Since my transplant, I've found that ambien makes me a little groggy in the morning. I only use it when it's on a weekend and won't be doing anything, such as driving, or working, first thing in the day.

Hi Deb,
My husband's HE is so much worse when he has had to take any benzo or pain med. He avoids them, unless it is really needed. Poor man broke his shoulder in a fall this summer and he started hallucinating all the time on the pain meds. When the pain meds were stopped, the HE improved and the hallucinations were gone.

about the sleepiness. Here is my observation as the one who lives with him 24/7. The less HE , the less sleepiness. For themister, sleepiness is related to HE.

What does he do about it. He/We accept it. We simply change plans if needed....., but getting older may be partially to blame? : )

We moved 1000 miles this summer...and into an over 55 community. We are now close to great medical and Mayo AZ. We really love it here.

Enjoy your twinkle lights ;) Big Hugs, themiz

I first got the idea about melatonin from Dr Melissa Palmer's book, where she suggested it. I spoke to my Hep and GP and they were both cool with it. A quick internet search just turned up conflicting info, some saying it can cause liver damage and others that it actually protects the liver....

Sigh.

-K