Fatigue.....

[somemonkey]

How do you deal with fatigue caused by autonomic dysfunction?

[halbashes]

As AireScottie mentioned, many patients take stimulant drugs normally used to treat ADHD, or Narcolepsy to treat the fatigue associated with Dysautonomia.  Stimulants such as Ritalin have the added benefit of being used as a vasoconstrictor thus raising blood pressure.

You mentioned feeling better after saline IV's.  Do you have a PICC, or PORT for home IV fluids?  Are you currently taking Florinef?

[supineallthetime]

I'll check out the Sjogren's possibility for sure.  My eyes have been red for several months straight too, so maybe they're drying up... doesn't seem to be allergies.

[supineallthetime]

The NUUN is an electrolyte tablet you drop in water.  Nice subtle taste, which I like since I'm used to (too much) plain water.  Sounds like your son is doing an electrolyte and plain water ratio much like I have been lately... and it seems good to me.  http://nuun.com (available on amazon.com or at sports/cycling shops often).  Here's some other options too from another post, and home-recipes to really mix things up:

http://www.medhelp.org/posts/show/1029173

[Weney3777]

You mentioned the more sleep you get, the better you feel. That's not the case for me. I feel worst when I first wake up, so if I wake up at 5am instead of 8am, it's not as bad, I've noticed. Laying down helps, just to rest. But sleeping is not the cure for me.

[Weney3777]

I have POTS and also battle terrible fatigue. I drink coffee, at least two cups a day. I know it's not good for the tachy, but I only have that in the morning, so once that's calmed down I have some. I did notice in the hospital that I felt generally better after the IV. There's not enough Gatorade in the world. Also, there are some cheaper electrolyte solutions(powder and such) in the baby isle at some stores. Take care.

[Heiferly]

I'm on Provigil because of my narcolepsy, and I fall asleep less during the day, but I still fatigue easily and need naps.  I guess I'm a bad example, though, because I can't really separate how much of it is dysauto and how much is narcolepsy.  

[AireScottie]

Do you not normally have much salivation?  I don't either, and docs were trying to tell me I was just dehydrated, while I was drinking 10-12 16 oz glasses of water, gatorade, etc, a day.  It turns out I have Sjogren's, a very common autoimmune disease that causes dry itchy eyes, dry mouth, dry nose, dry skin, and in my case destroyed my autonomic nerves.  If your mouth is always dry, you might want to google Sjogren's.

[AireScottie]

Some people take Ritalin, Adderall, or Provigil to deal with the fatigue and get some relief.  I was on Adderall for a short time, but it ended up winding me up more and making me crash all the harder when the body gave out.  Still, it might work for you.

[Lee9709]

What are nuun tablets?  My son is on florinef, drinks 2 20 ounce g2 gatorade, 4 quarts water.  hE  IS 16 200 LBS, 6 FT.  

[supineallthetime]

Had an IV a number of times and it does feel good!   I always get a pleasant constant salivation after an IV... guess the glands are happy!

I don't know how to stay that hydrated (or keep BP stable for longer).  Body always wants to dump the water.  The florinef (fludrocortisone) with some extra salt and steady water is supposed to be key... but it didn't quite cut it for me either.  Now that I'm drinking more "electrolyte drinks" (the little NUUN tablets a couple times a day) and not drinking as much plain water I think I am better overall.

I imagine EPO (Erythropoietin) is even better than just saline IV... but it's crazy expensive.

Being very consistent with hydration seems to be key.  One thing to keep in mind... the body takes time to build up the real useful contents of the blood... so several days of IV saline and/or good hydration should add up after a while and be helpful.

[somemonkey]

Thanks guys! The big thing I notice is that I feel great after saline iv. For a couple hours! Then I'm fatigued again. How do I keep this feeling longer?

[supineallthetime]

I pretend I'm an athlete!  I'll push a little but not too much, trying to build endurance slowly.  It doesn't really work but sometimes it seems like I get stronger.  Try to make the down-time count as best you can.  Not sure how... I never feel rested... but I try.  Sorry, not much help!  I find it challenging, too.

[tonyad]

Eeeww, Eeeeewww, I got it!   In one word...............Sleep!   lol

Ok, on a serious note, I have found through the years, that if I try to fight it.......I will be down a lot longer than if I would have just listened to my body at the beginning, and rested for a day or two (and not felt guilty about having to do so).

  Thats it for me in a nut shell. I do hope that you can find a happy medium for you.
Take Care,
~Tonya