FATIGUE!!! It's not what you think....

[ActiveMSers]

I don't know if this is a side effect of the transplant or not, but fatigue problems are driving me batty in that I don't have any fatigue--ever. I'm sure most of you are screaming at the computer that I should be so lucky, but hear me out.

In the past I've only experienced that crushing MS fatigue during relapses, and it soon lifted. Even though it is the most common MS symptoms (and one of the most disabling) I've never had it the way most MSers have. I know I'm super fortunate in that regard. So why am I bitching? I am never tired. Ever. Which means sleep is rare and insomnia rules.

For the past year, I haven't had more than six hours of sleep a night. That's okay; I haven't been a long sleeper since my teen years. But for the last month or so (especially with the Ampyra test run), my hours have dwindled to 1-3 hours a night. You would think after a few days of this I'd be tired, but no. I don't nap, don't do caffeine, don't exercise in the evening. And when bed time rolls around, I'm still wide awake. Therapists say don't go to bed until you are tired, which means I just read practically until the sun rises. And when I get up, I feel fresh. This is crazy. It's like being on a pulse of steroids all the time.

I'll be seeing a sleep specialist next month, which I hope will help get my body back on track. Ambien and other sleep aids aren't much help, either. I'll keep folks posted. Grrr. If you have some sleep secrets, I'm all ears....

[JudyW]

Long before any overt neurological deficits, it was the chronic fatigue which most changed my life and, ultimately, led to my retirement. With some success, I have managed it by approaching it as a mitochondrial issue. To that end, I have used the following supplements, all of which are involved in the ATP process of the body's energy production. They are D-ribose, Co-enzyme Q10, and Juvenon (acetyl-L-carnitine and alpha lipoic acid). Impaired mitochondrial function has long been suspected in those who suffer from chronic fatigue syndrome and, recently, studies are beginning to link it to the fatigue in MS. I am sorry I don't have those studies at hand. If I find them, I will send them on to you.

[ActiveMSers]

Hey Judy, apparently I needed the opposite of all those things, ha. The doc switched my sleep meds (10mg of Ambien was failing to do anything) and I've slept through the night two nights in a row. Wow. I'll go to every other day after a few nights, and then taper back to nothing. Hopefully my sleep cycle will reset by then....

[JudyW]

So glad you figured it out.

[ActiveMSers]

Sigh. My first night without any sleep aids went brilliantly, if by brilliantly I mean terribly. "Only try to sleep when you are tired" goes the advice. At 4 am, still not tired, I went to lie in bed awake. I officially gave up at 6 am and went to work on Christmas cards. Now it's about noon and I'm still not tired. Maybe tonight. Grrrrrrrr

[KristaH]

Not physically tired or mentally? If its mental try doing brain teasers or wear yourself out by doing really hard crafts like building an exact replica of some monument out of Legos lol or do some Calculus problems.
Good luck, I hope you can get some sleep!

[pawpaw]

Sleep

Dave, Insomnia is a pretty baffling problem. I know you are doing lots of these things, but I am going to list the to do and not to do list-

Keep a regular sleep wake cycle- up at the same time every day. That means no sleeping in, even if you just got to sleep
Avoid light exposure for 2 hours before bed- no computer screens, overhead lights, game consoles, backlit screens of any sort. Reading is okay if you just light the book- not a kindle.
Avoid all caffeine for at least 8 hours before bed
Exercise- strenuous as you can manage but not for at least 2 hours before bed
Put you day to "bed". Before bed, write down any worries, to do lists, etc and put them away so you can avoid trying to remember something
If okay with your docs, try melatonin. 3 mg dose - the timing of the dose may vary. Try taking it an hour or two before bed but also try it about 4 hours before bed.
Bright light exposure early in the morning- soon after you get up -for at least 30 minutes

There are Docs- usually PhD psychologists- who have an interest in sleep and do cognitive behavioral therapy. In my experience, this is the best therapy. Your sleep doc will know if there is someone in your area that does this. The board certification site is:
http://www.absm.org/BSMSpecialists.aspx
The doc I use here in Ky isn't board certified and he is great, so there are folks who are good and not on the certified list.

Sleep meds can be helpful in acute situations, but I feel they don't really help. They actually cause insomnia when you stop them.

Hope something in all of this helps.

Pell

[KristaH]

Pell,
Thanks for posting this! Those are all very good tips!
Dave,
I hope some of these work, or some other tricks you have

[ActiveMSers]

Pell, thanks so much for posting this. I've been on a pre Christmas holiday and have lots to catch up on (which I hope to do next week). I'm following your advice, which is excellent and specific. Fingers crossed; I'm optimistic. CBT I hear is the way to go. Thank you again!

[ActiveMSers]

Okay, getting off sleep meds is hard and I'm having a challenging time. My body simply doesn't want to sleep, and it's becoming a bit of a concern. Here's how much sleep I've gotten over the last 9 days:

-0 hours
-30 minutes
-0 hours
-7 hours (took sleep aid)
-0 hours
-1 hour
-3 hours
-0 hours
-3 hours

Despite 7 hours of sleep in the last five days, I'm still not tired, not sloppy, no baggy eyes, nothing. I'm determined, but this is getting a bit crazy. This can't be good for my health or MS. Gack.

[ActiveMSers]

Listening to mellow music (reeeeal mellow) before bed has helped. I feel the tide is turning, but boy it's been slow....

[ActiveMSers]

The last few nights I've gone to sleep with zero meds. I'm not sleeping for hours, but at least I'm falling asleep at a reasonable hour (well, before 3 a.m. for me). I see the sleep doc next week....

[ActiveMSers]

Finally! After a two month wait, I saw the sleep doc last week, who is a specialist... in sleep apnea. Which I don't have. Sooo I'm trying to get a CBT appointment (Cognitive Behavioral Therapy).

Fortunately, sleep continues to improve. I'm dreaming and staying asleep for hours (and falling back asleep). I'm not up to a full night, but 4+ hours of sleep feels great. Thanks for all the support here....

[ActiveMSers]

My CBT appointment was for tomorrow... but I canceled. Thanks to advice I've received here (and by PM), it looks like I've mostly kicked my insomnia. I've been sleeping 6+ hours without meds and I'm falling asleep relatively quickly. I would say, "pinch me, I must be dreaming" but I'm awake and this is really happening. I hope this keeps up and I will continue to maintain my newly developed better sleep habits. You folks rock and thanks again.

[LivWell]

Why I love this message board

I read this at 2AM today after doing a quick search on "insomnia" - WIDE AWAKE I was .

I'd heard about these great tips about a year ago and they helped me then. I would add to the list to make certain that you stay hydrated throughout the day. The body tends to sleep better when cool, and staying hydrated helps your body to eliminate internal heat.

Hopefully I can stave off another season of sleepless nights with these again!

Dave, Insomnia is a pretty baffling problem. I know you are doing lots of these things, but I am going to list the to do and not to do list-

Keep a regular sleep wake cycle- up at the same time every day. That means no sleeping in, even if you just got to sleep
Avoid light exposure for 2 hours before bed- no computer screens, overhead lights, game consoles, backlit screens of any sort. Reading is okay if you just light the book- not a kindle.
Avoid all caffeine for at least 8 hours before bed
Exercise- strenuous as you can manage but not for at least 2 hours before bed
Put you day to "bed". Before bed, write down any worries, to do lists, etc and put them away so you can avoid trying to remember something
If okay with your docs, try melatonin. 3 mg dose - the timing of the dose may vary. Try taking it an hour or two before bed but also try it about 4 hours before bed.
Bright light exposure early in the morning- soon after you get up -for at least 30 minutes

There are Docs- usually PhD psychologists- who have an interest in sleep and do cognitive behavioral therapy. In my experience, this is the best therapy. Your sleep doc will know if there is someone in your area that does this. The board certification site is:
http://www.absm.org/BSMSpecialists.aspx
The doc I use here in Ky isn't board certified and he is great, so there are folks who are good and not on the certified list.

Sleep meds can be helpful in acute situations, but I feel they don't really help. They actually cause insomnia when you stop them.

Hope something in all of this helps.

Pell