Severe Unrelenting Exhaustive Fatigue-Anything for it?
 

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. :hug:

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.:hug:

:hug: Craig :hug:

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. :hug:

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.

Hi Craig,
I wish I had a magic wand for you and everyone, but alas I don't.

Fatigue is a bummer. All those pain meds must give you a lot of severe fatigue, and morning drug hangover (as I call it). But you need your meds.

I tried a few drugs to stay awake. Provigil when working, got me home safe driving but still exhausted. It is not a cure.

Some use Ritalin, I think that is the ADHD drug used in children to calm them yet wakes those that don't have that problem.

Have you been tested for CCSVI? Only a ultrasound test by a trained IR, MD to find out. They find many diseases have blockages in the jugular veins and the brain cannot drain blood properly back down.

Best of luck my friend, I hope you find something to help you.:hug:

Hey..did you finish your book?


.

I take Nuvigil 200 mg daily and it is time released. I take a lot of other meds and this seems to keep me going with caffeine added in the am.

:hug: thats all I have to say :hug:

I hope you had a good nights sleep..:hug:

Iron & Red Blood Count if low will do it to anyone. Anemic? You may know It's also a fact chips & fatty foods rob energy after you eat them.

Are you taking Requip or Mira....forgot the rest of the word...for Restless Leg?
How about cannabis to help you sleep? I try not to use it unless I really need it for painful spasms and the restless leg when the meds aren't working...it really tones down both. I make sure to do it later at night...the munchies are relentless!!

I too have apnea...98 episodes...the CPAP helps in that department, at least.

I wouldn't try Ambien for sleep if I were you...that stuff is dangerous...gave me the crazies with only one dose...how about Ativan?

I pray you get some relief, Craig...:hug::hug:

I take Trazodone for sleep, it really does the trick and calms me down. It makes me move slower in the AM though but it's essential for me. I only take 25 mg which is a tiny dose and it works wonders. I sleep very soundly. It is old and cheap and safe and my neuro uses it regularly for MS patients.

acetyl L-carnitine (ALCAR)
 

A GOOD study with interesting results. I took Amantadine for many years but had to stop because it caused me to have VERY VIVID dreams. I started quoting people's opinions on current events who had been DEAD for many many years!!!

jackD


J Neurol Sci. 2004 Mar 15;218(1-2):103-8.

Comparison of the effects of acetyl L-carnitine and amantadine for the treatment of fatigue in multiple sclerosis: results of a pilot, randomised, double-blind, crossover trial.

Tomassini V, Pozzilli C, Onesti E, Pasqualetti P, Marinelli F, Pisani A, Fieschi C.
SourceDepartment of Neurological Sciences, University of Rome "La Sapienza", viale dell' Università 30, Rome 00185, Italy.

Abstract
Treatment with acetyl L-carnitine (ALCAR) has been shown to improve fatigue in patients with chronic fatigue syndrome, but there have been no trials on the effect of ALCAR for treating fatigue in multiple sclerosis (MS).

To compare the efficacy of ALCAR with that of amantadine, one of the drugs most widely used to treat MS-related fatigue, 36 MS patients presenting fatigue were enrolled in a randomised, double-blind, crossover study. Patients were treated for 3 months with either amantadine (100 mg twice daily) or ALCAR (1 g twice daily). After a 3-month washout period, they crossed over to the alternative treatment for 3 months.

Patients were rated at baseline and every 3 months according to the Fatigue Severity Scale (FSS), the primary endpoint of the study. Secondary outcome variables were: Fatigue Impact Scale (FIS), Beck Depression Inventory (BDI) and Social Experience Checklist (SEC).

Six patients withdrew from the study because of adverse reactions (five on amantadine and one on ALCAR).

Statistical analysis showed significant effects of ALCAR compared with amantadine for the Fatigue Severity Scale (p = 0.039).

There were no significant effects for any of the secondary outcome variables.

The results of this study show that ALCAR is better tolerated and more effective than amantadine for the treatment of MS-related fatigue.

PMID: 14759641 [PubMed - indexed for MEDLINE]