I've been dealing with severely progressive symptoms of my disease for 11 years now and I have reached a point of chronic sleep deprivation and interruption. Chronic severe pain, spasms, and involuntary movements make me feel like I've been at the gym for 24/7.

At one point years back I tried that med that is suppose to address and relieve the severe fatigue and exhaustion. It started with an L I think. I had no impact. Even now I can drink two full pots of strong coffee with no positive impact.

Does anyone know of any type of energy Rx, drink, pill, powered mix, ANYTHING that might assist in this area? I am desperate and the situation is advancing in severity and each episode is lasting longer.

Thanks you for any assistance you can provide.

I'm so sorry Craig. I have taken Adderall, Provigil, and Amantidine without any sucess. That doesn't mean it won't work for you. Many people here have good luck with these drugs. I hope you find some relief soon.

The problem is I'm already taking, Hydrocodone 500mg, Tramadol, Tegratol, Clonazepam, and several other maintenance meds. I never sleep more than 2 to 3 hours at a time and grossly exhausted at the least little effort such as a doctors' appointment, trip to Walmart.

I too have had those Rx meds in the past. I now recognize the names, and they did nothing for me either. Thanks for responding and trying to help.

Hi Craig

I am so sorry that you are experiencing this. I have had severe sleep disturbance for months after brain aneurysm surgery, as well as MS fatigue, but nowhere near as bad as what you are describing.

I can't imagine how hard this is for you. It's no wonder sleep deprivation is used as a form of torture. It is so cruel.

Lyn

Have your doctors addressed your sleep deprivation? Is there ANYTHING they can do to help you get some quality sleep? This seems like the most important issue.

I'm probably stating the obvious but it seems like it would very, very hard to find a way to deal with the fatigue without finding a way to help your sleep problems.

One of the ADHD Medications, Amphetamines, may work for you. Some are even Generic now, called Speed in the Day. For many even a low dose is great.

(((((Craig))))) Have ya tried LDN? If you are taking heavy duty opiod pain drugs, then it probably won't work, but it sure erased my chronic MS fatigue. Just a thought.

Craig

I've only used Provigil in the past and it worked well for me.....but costs a fortune if you don't have good insurance.

What types of vitamins do your take? Have you had your D and B12 levels checked?

I hope you can find something that works for you.

Allow me to provide a little better perspective for you on my unique situation.

My neurological disease is Spinocerebellar Ataxia, but the boogie man is Cerebellar Degenerative Disease. Since we are dealing with atrophy and dying of the cerebellum, medications really have little effect and the pain meds are kept at a minimal level because I will not live in a drug induced stupor.

I have had several sleep studies revealing Restless Leg Syndrome and severe sleep apnea where I stop breathing up to 48 times an hour. I use a CPAP machine consistently no matter where I travel. The sleep disturbances are a result of the brain stem stroke, combined with the above diseases are very unmanageable without giving me such strong meds I am totally knocked out.

My blood labs are all in line including no heavy metals, B-12, Vitamin D, Thyroid, all of that has been checked and are fine. I do take a strong, wide spectrum daily multivitamin twice a day.

I am doing this inquiry on my own to get any ideas for my doctor to check out. I no longer see any specialists as they all agree there is nothing more they can do for me, literally. Thus, I'm looking for any options that may work under my circumstances. The Naltrerxone (LDN), Adderall, Adderall XR, 1,000 mg of acetyl L-carnitine and 200 mg of alpha lipoic acid daily, seem to have strong potential. I will research them on the Internet and review them with my doctor as I've not tried any of them.

Thank you for all of your suggestions. I will now follow up and see what happens. As you can see, the combination of health challenges including the final prognosis, make all of this very difficult. I will keep you informed.

Try 1000-2000 mcg's of B12 when you get up for energy. 4000i.u's of Vitamin D. Forget about lab resuts go by how you feel. My b12 level was maxed on paper taking 500mcg's. D takes a while to build up, also takes a long time to go down. It get's absorbed in your cells & doesn't just pee out.
Some body builders inject B12. No idea what dose that would =.
I take 7 baclofen/day for spasms.