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Posted 4/25/2008 3:20 AM (GMT 0)
Hi there everyone.....one of the biggest challenges that I have with MS is fatigue. I have read much about MS fatigue, and I fit right into the descriptions. If I do not nap, I just do not function, everthing just seems to shut down, and what symptoms that I do have pop to the surface. As I am sure that you will all agree, it is very annoying at times, and interferes sometimes just when you want to go out and do something.

I have tried symmetral (probably spelled wrong) and it did nothing. So can you give me any ideas what I could try to maybe off set this nagging fatigue. Any help that you can give I would really appreciate it.

Thanks and have a nice day....

Gary
Posted 4/25/2008 12:14 PM (GMT 0)
Friday a.m.

 

Good morning, Gary:

 

Of the plethora (fancy word, eh guys?) of MS symptoms we live with, fatigue is one through five on my list.  We open our eyes in the a.m., and after a full n ights sleep, we are tired.

 

And no one can understand the depths of our fatigue unless they are another MS patient.

 

Have you seen the banner ads, on side of our board, for Provigil?  That is what I take to try to help my fatigue.  Does it make it disapper? No.  But it kinda' helps.

 

They are  offering free samples....but I don't  know if I'd get involved without talking to your neuro.

 

Sorry Gary...have to go lay down...I am tired.

 

Great Luck.  John

 

 

Posted 4/25/2008 12:26 PM (GMT 0)
Hi guys, you've mentioned this Provigil and it has side affects... what are those? Have you had any?

I have the severe shut down fatigue by mid afternoon (2-4pm seems to be my bewitching hours) but once I'm past that then it's hard to get to sleep! Then when I only get a few hours of sleep naturally I'm not rested and this is still with Flexeril for muscle relaxation and Mirapex for Restless Legs. Sometimes, if the pain is high, there'll be a Tylenol 3 but I try to keep them limited.

But I"m curious about the Provigil... do you have a feeling of "speed" on it or does it just keep you awake? My fatigue gets so bad it's like my brain is blacking out with my eyes open and I'm fully aware of it the whole time and can't stop it. Very strange sensation. I'm afraid one day I'll fall out of my office chair and embarrass myself! However if I get up and move around, it dissipates a little and then as soon as I get past 4pm, it's like a second wind of energy! Hard to figure out.

Posted 4/25/2008 1:12 PM (GMT 0)

My "drug of choice" to battle fatigue is caffeine, lots of it, up until about 3 pm.  At which point I "crash" for an hour, never more. I don't usually sleep...just sort of "doze" in front of headline news on the TV, or some other "drone" in the background.  Then I'm good for several more hours.  I've not found drugs to be helpful..but I've not tried the Provigil, so don't know. Have heard lots of folks doing well on it, though.

Posted 4/25/2008 2:28 PM (GMT 0)
Good morning, thanks for the posts.  Your description of your fatigue D'awesome pretty much matches mine. I went for about two years where I was just in a fog for most of the afternoon, etc and sometimes in the evening - and to the point that I could not function - I just felt totally spaced out.  It was not until I was dx, and began copaxone, and learned that my spaced out head feeling could be due to fatigue, did it start to go away.  When I get that feeling of it coming back, I just have to take 5 and relax or just snooze or have an outright nap.  That for the most part takes care of it.

Funny though, after I wake up from an afternoon nap, I feel funny - funny such as I sometimes have tremors, and sometimes I feel anxious, and sometimes both at the same time.  Not all the time, but some of the time, but when it happens I just feel miserable. It generally takes a few minutes to pass, and then it does.... Strange I would say.

Anyhow, other than the one drug that was mentioned, it does not appear that there is too much out there that helps.  I find that it is not as bad as it use to be, but I was told that the Copaxone I am on may help to some degree with the fatigue...

Anyhow thanks, and have a nice day

Gary

Posted 4/25/2008 3:29 PM (GMT 0)

Hey Gary,

Talk to your doctor.  Provigil is not the only med.  It is a very popular med and seems to be very effective.  I don't really suffer too much from fatigue.  I am just lucky I guess.  I can get some serious brain fog though  - not good as a teacher!  I have been taking adderall for a while now.  It is a psycho-stimulant.  It really really helps me.  I feel alert and can think and concentrate clearly.  This is a drug that is used for ADD.  Many of the ADD meds are used by people who have MS.  Talk to your doctor and see what is available as those are the only two I know of.   

Or go the Uppitycats route and get a good coffee machine and start brewing!!!  I love coffee but hate the caffeine headache.  I do drink it once in a while as my hubby brews a mean mug. 

Love and prayers,

Posted 4/25/2008 3:31 PM (GMT 0)

Great Gtetchen, thanks alot for the post.....

Enjoy your weekend

Gary

Posted 4/26/2008 2:52 AM (GMT 0)
Uppity, my sis is the caffeine person in our family... for some reason, too much ( and two cups + is too much for me) gives me horrible tremors worst than any of my very old long ago days of speed use... and then the stomach kicks into extreme nausea...I use to use no doz/vivarin on long driving trips and it just made me very sick.  Caffeine doesn't affect my alertness either, but excess gives me these lousy reactions, it's weird.

Gary, it is difficult... I sometimes feel detached as though I'm watching my body go into this sudden sleep mode... very freaky feeling... but then when I lay down I don't sleep, and often times, I've noticed this so much so at night  when I try to unwind to sleep especially that I have major right side twitches that involuntarily make my arm or leg jump. Kinda like when you're in the half in half out of sleep state... and then you wake yourself up too! It's a challenge to get the right routine down... nowadays it's reading a good book til I'm droopy and praying nothing startles me out of the sleepiness or it's a battle to get back to sleep again.

I plan to discuss the provigil... and see what other ideas the neuro has too.  Sometimes I wonder if it's some kind of pinch somewhere that's causing an oxygen deprivation because the falling asleep feels just like if someone were cutting off my air how it might be to just drift out... it's very strange.

Posted 4/27/2008 2:34 AM (GMT 0)
Provigil is my life source i take 400 mg a day. Without it I am a slug. I take one in the morning and one before the "BeWitching Hours" start. (perfect expression, loved it) It works for me perfect. and a couple cups of coffee.
Some say workingout gets them going. Tried it as i always have worked out and it makes me even more tired.
There are other drugs out there but his works the best.
Fatigue is the worst. Taking Provigil too late in the afteroon...sucks too.
Posted 4/27/2008 2:46 AM (GMT 0)
Good info to know Buckeye... thanks! Yeah, bewitching hours has always been those periods that plaque me and they happen pretty much the same every day... it's clockwork! Unbelievably routine, I could set my clock without checking my watch! I've never noticed more energy when I was working out ( I tried Curves for a year, just felt more swollen and more achy) Now I want to work on a solid workout plan for strength and flexibilty and balance... I doubt it'll ever help the energy levels again.

Today I listened to the idea of taking a nap. Hubby's company always has big party at their office on the main drag in town where we have our annual parade for historical month stuff and it's always a late night long deal... on your feet etc. So this afternoon I told him I needed an hour to an hour and a half if I was gonna be half way ok tonight... and he gladly said grab the nap, I'll get ya up in time... so I did. My goodness what a difference! it was nice not dragging and yawning unmercifully!

Now I gotta talk to the Neuro about this provigil... I'd sure like not to fall out my office chair with the one boss... one job it's easy to get up take a walk, run an errand around the church or move around more... the other one, it's one room and our desks are right beside each other and my work is fairly intense and steady. That's when my brain shuts down... it'd be great to discover something to overlap that.

Posted 4/27/2008 2:51 AM (GMT 0)
WOW you have two jobs???? Ya, Provigil will change your world. I can't really take naps. I have a 2 yr old. So when he naps i study, because I'm back into school or i do house work. If i do nap/laydown it makes me more tired! imagine that.

TWO jobs??? Good for you!!
Posted 4/27/2008 3:02 AM (GMT 0)
Two part time jobs that equal one (the first one 20hrs, the seond 30hrs) .. but the one part time job is actually almost full time with on my own hours at night too... it's all very flexible.  I graduated from college last year a Paralegal (finally got my AA in my old age) and discovered I might of made a great lawyer too but then this cropped up even worst and the symptoms exacerbated the summer of 2006 which triggered the neuro visits. In the meantime, I got partime work at the church while in school with the intention of moving to a law office one day... not anymore. The stress would make me worst than ever. The two jobs both know my condition and value me enough to work with me. Fortunately if I'm in a bad state, I can work from home with the second job.

So it's two great jobs but part time jobs that equal full time work in the long run. :)

Posted 5/7/2008 3:22 PM (GMT 0)
Provigil helps in a.m. but by noon i'm sliding downhill and 2:30 dead in the water.
Posted 5/11/2008 1:57 PM (GMT 0)
Last week when I went to my neurologist I told him that I am having a really hard time with fatigue. He recommended taking Acetyl L-Carnitine. It is a vitamin that can be purchased almost anywhere. He said to take 1000 mg in the morning and 1000 mg in the evening and that within a week I would notice whether or not it is working. I have only been on it for 3 days so I cannot tell you whether or not it is working yet!

But I thought it is definitely worth a try since it is something natural!

And make sure you get Acetyl L-Carnitine, not just L-Carnitine. There is a difference!

Hope this helps,

Elaina
Posted 5/11/2008 5:25 PM (GMT 0)
Thanks Elaina, I'm up for anything! And natural is good by me! I'll check into this too.

I have started a very strong vitamin/supp regimen but it's only been about 8 days now and have noticed a difference adding CoQ10, Bcomplex w/ C, B12 sublingual and Evening Primrose with other stuff to my regimen that it has improved my energy a bit but still fatigue is finding me at the bewitching hours... maybe this is the missing ingredient. :) ?

Posted 5/20/2008 10:56 AM (GMT 0)
I am so excited! I saw my GP yesterday and she gave me samples of Provigil for the fatigue and I tried yesterday and it was really amazing how great I felt ALL DAY! I was unbelievably impressed! So now I understand. I'm not crazy about the idea of one more med but hey, this one's a keeper! :) No more fighting the sleep monster! What a blessing! I hope there's no tolerance level or build up that could ruin it's effects... anyone got any tips on using it, keeping it effective, not overdoing it or spacing it out? Is it ok to skip it on weekends and actually nap? The GP suggested that for body rest... I like having the energy again, oh my gosh it was so nice!
Posted 5/20/2008 1:27 PM (GMT 0)

Hey Deb,

I am so glad you found something that works!!  That is great.  Fatigue can be hard to treat.  I am not on provigil so I am certainly not the voice of experience here.  I have heard that it is easy, especially at first, to overdo it with your knew found energy.  I think I med break on the weekends sounds like a good idea and worth a try. 

Suuny?? Lynn?? Can you help Deb out with some advice here? Thanks.

Love and prayers,

Posted 5/20/2008 3:33 PM (GMT 0)
DEB!!!!

I'm so SO glad u tried Provigil!!! It is such a good med for many and that includes me! I used it awhile and it was great! I agree that the weekend break may be a good idea, but just watch how that goes for u. Make note of any issues or even smallish probs u find with that schedule and let u'r doc know. Sunny and Lynn will prob be along to post to u soon. I'm sure they will have some great info on this for u! Yes, there is a bit of a crash for some. So take it really easy with this new found energy for now. Test the waters and go slow, ok? I"m so happy for u!!!
Posted 5/20/2008 11:19 PM (GMT 0)
I hear y'all and was thinking the same thing... sleep was not my friend last night ... hard to find, and I don't want to be hunting rest now that I have the energy. Is it possible to split dose Provigil? Does it work a "little bit" when split? I mean I do love the energy, OMG, it's just unreal to feel great but reading myself to sleep til 2am and bouncing back up at 6a will wear me out I know.

So the weekend crash time will definitely be the way to go unless I have plans I can't get naps in and then I'll work around it. But it is a Godsend for sure... looking forward to more tips... and my visit with the neuro now. Seems like these past 2+ mos waiting for my time to see him has done nothing but confirm confirm confirm his dx ... now to get to work on the rest of the plan! :)

Posted 5/20/2008 11:36 PM (GMT 0)
Hey Deb!

Yes, as long as the pill is scored...and i think that one is...u can split it. The score means just that...there is the same amount of meds in both sides...so spitting it is ok. BUT...talk to u'r doc first! U should never affect the dosage of any med without u'r doc's input. As far as the effectiveness of the med after splitting...i suspect u'll get enuf help from it at half dosage and then if u want to take the other half later in the day or even half of that u should be ok. U can also ask u'r doc about a lower strength pill...and then if THAT pill needs splittng u can. ;) Whew! Also...with the lower dosage (splitting or lower strength pill) u may be able to just continue on thru the weekend...avoiding that crash. Ok, now that i've been all around that tree, i'll say bye!
Posted 5/21/2008 12:02 AM (GMT 0)
Hey Rhonda, Yep it's split... so maybe I'll try one split tomorrow and see how it carries me thru the day then I'll have my "experiment" data for my neuro on Friday....:) (he's gonna love me, he's a direct, stubborn but very unique scotsman with quite the personality and great bedside manner!) Then I can tell him what I did, what I learned and ask him what he thinks! :) Should be interesting.

 

Posted 5/21/2008 2:31 PM (GMT 0)

Good morning D'awesome - how long have you been taking this medication - and how long did it take to kick in.  It seems the longer that I am on the copaxone, my eneergy level is improving, but it still has a long ways to go.....

It is frustrating at times, cause just when you have an event to go to, etc, you are flat on your a....... Now that it is warmer out, if my office gets too warm, 'm done. Feel dizzy, sick to my stomach, and crazy tiredness.....

Anyhow, if youcould pass on that info, that would be so great, and have a great day

Gary

Posted 5/22/2008 2:31 AM (GMT 0)
Beau, for the past month or two I have been as you describe... pretty much flattened by the late afternoon hours just about the time when I have to wrap up my days, think more on my feet or plan to go somewhere else for the evening!  Several times I could literally feel a total shut down of my brain and my body like a switch being turned off and feared I might shock my bosses falling out my chair! On weekends hubby gladly let me catch cat naps but the last couple weeks I'd been sacked by whole days and that just couldn't keep happening to me... I know I sound silly but there had to be something.... thankfully my GP is very willing to work with me on meds. She been thru a lot with me and knows me real well and what I know and all... so we talked over the provigil and she gave me 3 wks worth of samples...

200mg tabs... first day (monday) it was immediate...  My only problem has been insomnia at night... the last two nights I haven't fallen asleep before 2am and I've bounced back up at 6am and this isn't normal after being a 6-8hr sleeper for along time since this really hit me. So I know I'm in for some adjusting.

So today I tried the half pill, split it... and it worked still. So I'm going with 100mg. I don't want a rush or to speed my tail off but I love being really alert, CLEAR headed, awake and feeling vibrant again! It's really amazing to me, I understand Buckeye's comment about "lifesource" now big time! And I'm so stunned by it cos I've been struggling so much with this mentally foggy, debilitating fatigue! 

"Fatigue" is too nice a word for the feeling.,.. it's like a devastation! But I digress.. yes, it's great... so far no other major issues, except the insomnia at night... even with my normal regimen of supplements and muscle relaxers. So cutting it in half today, I'll let ya know tomorrow how it went tonight...

and by Friday I ought to have a good "experiment" to report to the neuro! :)

I hated to do this - this is really good.  Email me for an explanation if you want.

Post Edited By Moderator (Gretchen1) : 5/22/2008 7:47:02 AM (GMT-6)

Posted 5/22/2008 1:42 PM (GMT 0)

Hey Gary,

It is nice to hear from you again.  I am sorry you are struggling with fatigue so much.  It really sounds like you need some med help with this.  I am hoping you get some relief there soon.  I know you work full time and that must be really rough.

Deb,

Wow!! Be really careful. I am worried that you are going to crash.  I am thrilled of course the it is working for you.  I think the half dose is a great idea.  You seem very careful and mindful of what you are doing with the meds.  I would like to very gently remind you that any references to illegal drugs is prohibited and I had to a edit just tiny bit.  I hope you don't mind!!!  You have a great post with some very solid and helpful information. 

I take adderall in the morning (ten mgs ) and it has really helped me too with the brain fog.  I just needed a tiny something to get me through the first part of my day when my work is the most mentally important.  It is like you described - clarity!!!  It was something I had really worried about until I was given the adderall.

Good luck to you both.

love and prayers,

Posted 5/22/2008 2:25 PM (GMT 0)

Well good morning to D'Awesome and Gretchen....great post D'Awesome, and nice to hear from you too Gretchen.  I have a neuro appoinmtment in June, so I will mention this mediciation to him.

I have been away for awhile, on a bit of a vacation, as well, helping with the plans for my daughter's wedding that is happening this weekend....

The fatigue and the related brain fog is the worst part of all of this for me, it really does make the afternoon at work sometimes just miserable. It is so unpredictable, there are days when there is none at all, and then there are days that I can hardly make it till noon before feeling the effects.  One thing that I have noticed, is that if my office gets too warm, which it does often lately, you can rest to sure that it will be a brutal afternoon - kinda dizzy, head foogy, fingers go numb, headache, etc.....so the heat thing in my office is definately something I need to take care of...

Anyway, thanks for the posts, and have a great day

Gary

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