Is there a way to counter the exhaustion?

Status
Not open for further replies.

Mike in Maine

Distinguished member
Joined
Oct 18, 2013
Messages
244
Reason
PALS
Diagnosis
10/2013
Country
US
State
PA, No longer live in ME
City
Pocono's
Is there a legal way to counter the exhaustion (too old for the other way), that doesn’t include 5 hour energy, monster drinks or 50 cups of coffee. I feel like I have been out all night steaming, without the great stories to go along with it. I crashed for 9 hard hours last night; I should be able to function. I’m having to leave work, it is that bad. So any suggestions on legal ways to counter the great PLS exhaustion?

Mike
 
I know PALS have been prescribed either mestinon or provigil. Provigil can cause dependency. I know someone who uses it when she needs it for a big event think it can be used more regularly but you might get used to it. Mestinon works for some I have heard. Don't know if anyone with PLS has tried but might be worth it mestinon is generic and cheap
 
Last edited:
I use Provigil for the fatigue myself, and have long term. It isn't magic, but it gives me 12 hours of dependable awake time to do things in. This is the kind of thing your neuro can help you with, there are options.
 
Mike, all the ALS doctors talk about "conservation of energy". Not a medicine but a change in lifestyle. Give up the things that further zap your energy unless you love it. Things like yard work, running errands, etc. that someone else can do for you. Save your energy for the important things. As a CAL, I really MISS the ways my husband used to help me but know that my doing them now means he has more energy for what is meaningful to him. Have you considered cutting your work hours? Good luck.
 
This is a good topic, one I can relate to every day. Exhaustion and fatigue are my biggest issues. If I don't get 8-9 hours of sleep each night I am just wrecked for the day.
Coffee in the morning, and if I have things to do (errands, yard work, motorcycle rides, etc.), I will use energy drinks. They don't have the same effect as back in the day.
I plan on asking if there is anything available, at my next clinic visit.
If I don't have things to do.....I spend a lot of time on my A$$. Seems like my get up and go, got up and went!
 
Thank you for the suggestions, left work got home at nine and crashed till one. I didn't mention on top just being exhausted from the MND, you toss on the Baclofen and it is lights out. By the weekend I’m toast very easy to sleep 18 hours with naps. Thank god for an understanding wife and family.
 
>By the weekend Im toast very easy to sleep 18 hours with naps.

I'd need a handful of ambien to get even 7 hours in ...
 
>I spend a lot of time on my A$$. Seems like my get up and go, got up and went!

Ditto that!
 
Thank you for the suggestions, left work got home at nine and crashed till one. I didn't mention on top just being exhausted from the MND, you toss on the Baclofen and it is lights out. By the weekend I’m toast very easy to sleep 18 hours with naps. Thank god for an understanding wife and family.

I feel you on this......I have never had this much fatigue and exhaustion in my life. It is definitely worse than staying up and partying back in the day.
One thing I forgot to mention in my previous post is medications, and learning how they affect your body. I cut my Amitryptaline from 50mg to 25mg, a few weeks back.....and am feeling a little better. When I was on the 50's, it would take me 2-3 hours each morning to get moving.
 
With you Mark, had to cut down on my meds also. Don’t even take the Tizanidine. Have to be careful, if I lessen the meds too much the spasticity goes crazy and I get so tight it just as bad. Want to do the Baclofen pump, but the only doctor up here that installed them, decided he wasn't making enough money on them so he stopped. Now it starting the process all over again down in Boston. Have doctors appt on the 20th will have to ask about those meds.
 
With you Mark, had to cut down on my meds also. Don’t even take the Tizanidine. Have to be careful, if I lessen the meds too much the spasticity goes crazy and I get so tight it just as bad. Want to do the Baclofen pump, but the only doctor up here that installed them, decided he wasn't making enough money on them so he stopped. Now it starting the process all over again down in Boston. Have doctors appt on the 20th will have to ask about those meds.

My appointment is the 27th......hope I can remember to ask all the questions I have. Perhaps I will start writing a list.
I have cut my Neudexta in half as well, just could not tolerate it. Not taking anything for spasticity yet...but it for sure in my future. Lately if I stand still for more than 10-15 minutes my leg muscles (thighs) get so tight it is difficult to walk. Also when I sit for long periods my legs get real tight.
 
Could not take the Neudexta, it really had a negative effect on my spasticity. My legs were awful, real embarrassing in meetings kicking people under the table. Just try to deal with the EL, crying all the time just blame it on my allergies, a little awkward when it is snowing with 2 feet of snow on the ground.
 
Mike, blame it on dust in the ventilation system. Or just tell it like it is, if they can't handle it that's their problem
 
Yes the exhaustion is awful! I take Baclofen before going to bed because the clonus in my ankles will other wise keep my awake. Maybe I should try not taking it...?

Suffer from insomnia some nights but couldn't take ambien - in the morning I lost all control of my leg muscles. Now I'm trying an herbal sleep aid.

I wish I had advice for you. I need that help myself.
 
What I have done to counter my fatigue ( I am sure mine is not as bad as it is for many of you ) is to keep a diary of my energy levels. What I have noticed is that the fatigue has a certain pattern according to the hours of the day. When I got the pattern down, I started adjusting to it trying to intercept it.

I am taking naps when I know I am going to be the most strung out and I am assigning tasks when I know I am going to have some energy. I have noticed that when I do this, and don't push myself I feel much better on whole.

Medically, Provigil is the drug that is most commonly used today. But there has been studies that show that people with neurological fatigue respond very well to Adderall and Ritalin, which are cognitive enhancers for people with ADHD and narcolepsy. However, the worry is that it is a mind steroid that will be a cause for overexertion.

I have some insomnia issues as well, and I also take a herbal sleep aid as well as chamomille before bed.
I also want to say no-no to a lot of coffee. Caffeine will only make spasticity and clonus worse, leading to more exhaustion in the long run. You might feel invigorated by caffeine briefly, but when its all out in your system it will only be worse.
 
Status
Not open for further replies.
Back
Top