Thanks Everyone for your insight.
It really gives me something to go on.

I 've had 2 cups so far today and do feel a little jittery now, after the second one. The first one did perk me up but, I still got hit with a few bouts of dozy-sleepy stuff. How weird is that?

Will see how this next dose does. It sounds like the coffeee drinkers here take it mostly in the morning and then taper off during the day toward the evening (Except for Elaine :)). I'm going to try that.

Thanks Jo*mar,
I do take 1000-2000 mcg of Methylcobalamin in the morning on an empty stomach and I do think that it helps with the general fatigue, but this sleepy stuff doesn't seem to be affected by it, even with an increased dose (4000 mcg).

With love, Erika

Hi Erika,

I drink coffee but only because I like it ---with a non-dairy creamer :)

Coffee does not help my fatigue nor does it give me more energy. It can cause an increase of shaking.

Coffee is like any other simulant I have tried --- they make me more tired and shaky.

I drink coffee all day, often having my last cup when I crawl into bed at night. Doesn't help my fatigue but I do get a wicked headache if I don't have it:o

I tend to think all the things we try for fatigue stop working/wear off after a while. I tend to need to switch up "my bag of tricks" now & again - regardless of what Rx pill, alternative treatment etc. (sigh). I can offer that I still need my nap, no matter what I take for the fatigue.

"...they make me more tired and shaky"

I'm finding that it does that to me as well by the afternoon, but at least it does perk (pardon the pun) me up in the morning. Maybe the shakes and tiredness will wear off once the body adjusts to it.

This afternoon I bought a pack of cigarettes and have smoked two. I used to smoke them in college to get through the long nights of studying.

BAD Erika...Bad!
It did make the body feel better though :D.

With love, Erika

hi erika,

i think for the kind of fatigue you're describing it's important for you to see your dr. this is a bit more than MS fatigue IMHO.

it could be dangerous for instance if you were driving or operating machinery etc. you might even need a sleep study, and/or another type of medication might work better than caffeine.

please share this with your dr.

I take 2000mcg B12 & 1/2 a 200mg caf pill soon as I get up to counteract the 40mg baclofen at the same time. I yawn much less. One can of cola/ice/water with lunch. Testosterone also helps me greatly.

Wiz, what do you think of the Vyvanse? I know you used to use Adderrall for fatigue. The Adderall gives me a headache if I take it too much.

I think my fatigue also comes from iron deficiency. I'm trying to sort out what is MS fatigue and what is nutritional deficiency. I'm off to a hematologist to find out.

Hi Natalie,

I love Vyvanse! :) I'm almost out of my one month free trial so I need to get my refill and see what my cost will be. Adderall made me nauseous and affected my appetite, it actually made me eat more sometimes.

Vyvanse stays steady, doesn't give me nausea or make me hungrier. In Illinois we can only get one month at a time through the local pharmacy because it's a controlled substance. If I could do mail order pharmacy it might be cheaper but I'll find out when I go for my refill next week.

I'm really glad that I agreed to try it.

Thanks Nancy,

My MS neuro tried me on Amantidine, which caused some sort of negative reaction, so I had to stop taking it. I'll have a consult with him on the 20th to see where we go from here. He mentioned trying Provigil if the Amantidine didn't work, and at this point I'm ready to try just about anything.

He thought that the bouts of sleepy fatigue were likely due to chronic pain and the exhaustion of the adrenals that it causes; so he also started me on Lyrica for pain.
Unfortunately that medication led to what I think was an allergic reaction (increasing edema in the extremities and face/throat, along with increased muscle pain with each dose), so that was stopped after 5 doses.

I'm not driving very far these days and only when I'm feeling up to it. I can tell when these bouts are likely to happen because other symptoms become more pronounced (blurry vision, heaviness in the body etc). Those Sx are enough to keep me from behind the wheel all by themselves.

I'm just looking for something to get me through until I see him again.

Thanks Eddie,

I too take 2000 sub ling B12 (my blood levels are good & blood cell counts are all good as well). I also take Baclofen and picked up some caffeine pills yesterday to see if they are easier on the digestive system than the beverage.

I've taken 300 mg today and have also downed a couple cups of coffee today. So far so good with the digestion. Only a couple of near nodding-offs this afternoon. The caffeine makes the body shaky though. And dare I say, I'm a little cranky too? :eek:

I feel like I'm a bit out of control lately. Not quite around the bend and ready for the Ya-Ya house, but definitely not myself. I'm aware of not making wise choises...but the usual concern regarding consequence is not there; and for some reason I just can't seem to care.
I think that my give a *** is busted.

With love, Erika

Erika have you ever had a sleep study?