** What’s the real reason my consultant asked me to reduce my dose from 150 daily to 100mg? I’m now even more sleepy and dull than usual 
He said it was due to recent studies highlighting its side effects, but I’ve been doing fine on it for years.
Can anybody help shed some light, like does this sound like a reasonable request??..
hiya
i have no idea if its reasonable or not.
one of the things i am wary of regarding drugs to keep me awake is-why would i take something to encourage my body to do the opposite of what is wants to do? mine is already confused enough and i will not deliberately add to that confusion. i understand that some find such drugs beneficial but at what cost to their natural system? i sleep though the day-have just woken actually-cos my kids are due in from school. i wonder if u are really more sleepy now or because you EXPECT to be then u are. i am not from a second saying that u are mistaken-i dont know! but i do know that our bodies play games with us-we have to learn for ourselves how to ‘beat them at their own game’…
i guess the answer will be down to cost? but maybe ur neuro has more understanding than u thought re pain. gosh-its complicated aint it?!
ellie x
No idea, but I guess he wanted to see whether you could get the same good effects for a smaller dose. I don’t know what the side-effects are either, but no doubt it has some, as any pharmacologically active drug will do, so it stands to reason that you don’t want to be taking any more than you need.
If so, then what he’ll want to know is whether his gambit has worked. From what you say, it obviously hasn’t, so if I were you I would be getting in touch to say so and ask for the original dose to be restored, explaining why. He would need a pretty good reason to say no, I’d have thought. If it was THAT risky, I guess we would all know about it by now, wouldn’t we?
I take 200mg in the morning, and it really helps. Occasionally I forget, but it becomes clear pretty quickly!
Alison
x
Somebody on this forum a few years back had a really seriously nasty experience with Modafinil. Basically, it triggered major organ failure and he (I’m fairly sure it was a “he”) was lucky to come out of the experience alive, albeit with permanently damaged liver / kidneys / whatever.
I’m with Ellie on “why would i take something to encourage my body to do the opposite of what is wants to do?” but, that said, my fatigue’s been a whole lot more manageable since being on Low Dose Naltrexone anyway.
Is it worth writing a letter to your neuro telling him how you’re feeling and asking whether the dose reduction is, in his view, mandatory or advisory?
Lolli xx
ALL drugs have potential side effects. Even “mild”, over the counter drugs can, and do, cause death. That doesn’t mean that they don’t also do a hell of a lot of good for others.
I’m lucky, modafinil doesn’t work for everyone, but it has transformed my life - for the better. I take 100mg in the morning and 100mg in the afternoon. I’m no longer a poor excuse for a zombie and have to sleep for hours every day. Instead, I am (mostly!) alert and awake and sleep very well at night. (The only time this changed is when my vitamin D levels got too high! Hmm. Something else with the potential to cause death.)
The European Medicines Agency issued a warning about modafinil in late 2011 about potential side effects and a recommendation that it only be prescribed for narcolepsy. This has reduced off label prescriptions for new patients and some MSers are having to fight to stay on it. If you have been on it for a while and you have had no side effects worth worrying about, then I don’t believe that they can withdraw the prescription as long as you have it on repeat, but it may be a fight
Here’s a link to the warning: Modafinil | European Medicines Agency
Ultimately, we have to make personal pros vs cons decisions. For me, it’s a no brainer. I’ve been on modafinil for three years and have no side effects and plenty of benefit. I would fight tooth and nail to keep it on my repeat prescription list!
Karen x
My body “wants” to piddle uncontrollably, be so weak in the limbs I can’t walk, have numerous relapses, and unrelated to the MS, my body also “wants” to develop pulmonary embolisms and do its best to kill me
Thanks, but I’ll take whatever the doctors think is in my best interests to improve my quality of life and keep me alive.
B
Good morning(?)!
Fortunately, this thread’s about experience and treatment of fatigue and not uncontrollable piddling, weak limbs, numerous relapses, and matters unrelated to MS - all of which of course deserve separate consideration and a full medicine cabinet.
Not quite incidentally and only tangentially on topic, there seems to be a move in the UK towards downgrading the right to a good night’s sleep. Apart from the fact that our entire economy and current lifestyles support something less than [what I personally consider to be] a full night’s sleep, the NHS would benefit ££££s if GPs were to knock “good night’s sleep” off their patients’ rights lists.
Do you sense a similar move in your neck of the woods, or is all quiet?
Some not-so-recent studies have been bandied about supporting the notion that we only need to grab a few hours sleep and it’s OK not to have continuous sleep. Maybe the sleeping pill manufacturers will release counter-studies.
Sleep doesn’t cure fatigue, but debilitating fatigue + lack of rest & sleep = bad news. IMO.
Lolli xx
Since Modafinil is only availble here (Australia) if you have Narcolepsy and isn’t availble for MS fatigue I can’t comment first hand but I would do ANYTHING and take anything short of an illegal susbtance to get rid of the fatigue. It isn’t a matter of my body “wanting” more sleep or rest. It has nothing to do with social constructs of working more and sleeping less etc.
MS Fatigue in my case is as uncontrollable as my limbs and bladder and far more disabling. I can only be up for an hour before I am shaking with exhaustion, my speech is slurring, I am unable to walk or hold anything because my muscles have collapsed due to neuro-muscular fatigue and it is physically impossible to stay awake. I will then need about 2-3 hours sleep to recover from the 1 hours activity. (Activity being making and eating breakfast, we’re not talking about running marathons here).
If Modafinil was available here to “beeping” right I would take it, the same as I take any other medication to improve my quality of life and give me some degree of functioning back.
You and Ellie may be fortunate in that neither of you suffer extreme MS Fatigue; I wouldn’t know how bad your fatigue is but I can fully understand anyone who is badly disabled by this crippling symptom desperately wanting anything that helps to alleviate it. Sleeping at different times as my body demands it isn’t a good enough solution for me; I hate living a half life due to fatigue. I would love to be able to stay awake and FUNCTION during the day
B
hiya girls
i see my name mentioned above…
i sleep 10 ish hours a night and also through the day as required. i dont ‘fight’ anything-least of all myself! my aim is to be awake for my kids and that requires some organising on my part (and several mistakes!) but i do it to enable us ALL to have a quality acceptable for us a family-different strokes for different folks eh? as i see it there is no cure,ms is proggressive so i do what i can to muddle through. normal is over rated anyway-we are all unique,just like everyone else
i read alot of posts on here-i love the evidence based ones (belinda and karen!) and also the unusual ones(telementry and biped,as steve calls him!) because i like to think out with the box. but at the end of the day i follow what is right for me,surely thats all we can do?
all the best for you dear reader on YOUR path
ellie x
Hello!
After being a sleeping beauty for goodness knows how long, and after trying Amantadine for a year, I bleated for modafinil. When I started it, it took a while to adjust, but it was like someone gave me my brains back instantly. I hate being reliant on such a drug but it is a lifesaver and has enabled me to go to work and study. It isn’t a magic bullet, as I still need to be careful as it doesn’t really have an effect on motor fatigue and I still often need to grab an hour to regenerate as it were!
I don’t think anyone with MS likes taking stuff like this and I know I don’t. I don’t know what it is doing to me for sure. As Rizzo says, some neuros stopped prescribing them because of an EU directive saying that the risks outweight the benefits in patients other than those with narcolepsy. I had to fight to get put back on them saying why I thought in my case the benefits outweighed the risks - I won.
Now I get them sent directly to my door. What a change!
Modafinil isn’t ideal, but neither is MS…
Steffi
Hiya Everyone
I’ve had MS now since (officially) December 2012 when the Neurologist confirmed the diagnosis given to me by another Neurologist in June 2012. After posting on the New Diagnosis or Before Diagnosis pages I feel I can now join the Everyday Living one.
I would give anything to return to some kind of normality, be the person I was before, but after experiencing 2 chronic fatigue episodes after working 3 days in a row during the past month, I now need to accept my limitations (but not allow them to bring me down). I’ve been trying to get back to normal hours at work (I work part time in a nursing home) but haven’t been able to since returning in December 2012. Obviously management are getting quite frustrated but that’s for another post (Grrr Bosses post springs to mind hahahaha). Last week after working Saturday, Sunday (for 5 hours each day) and Monday (6 hours) the fatigue hit like a train at lunchtime. My dad picked me up from work at 3pm and I was in tears for 2 solid days afterwards. I felt completely out of control, emotionally drained, like a ten tonne truck was sitting on my shoulders stopping me from moving anywhere (I guess you all know these feelings). It wasn’t until the Thursday when I had a second Brain MRI scan appointment that I had a bit more energy to get out of bed, shower and dress (albeit extremely slowly but I did it ).
This post is so interesting for me and as I have the MS Therapist coming to discuss fatigue management on Tuesday this week I shall certainly ask whether Modafinil would be suitable for me. I don’t care what the pro’s and con’s are, it would just be nice to be alert during the working day - I don’t care whether I’m bed bound on my days off. I hate the feeling of not being completely alert during the day - I feel like I’m not giving 100% to anything I do. My brain is saying “of course you can do it” but my body is saying “please, please for gods sake, stop NOW”.
A friend of mine who’s mother has ME has mentioned something called “ENADH” - has anyone ever heard of it? He said it’s been a lifesaver for his mum and has helped keep the fatigue under control.
Thanks
Pen xx
I was diagnosed with R&R ms 13years ago and over the years have had only a few relapses ,I still manage to work part time as a cook ,but only due to taking modifinal
,for the past 2years , lately my neuro doubled the dosage to 200gms and my ms nurse said I could take up to 400gms a day but I won’t just now as what I take just now is a great help ,don’t know how I coped with my job before modifinal ,as I was soooo tired all the time
what is "ENADH plz?
ty Anna x
Hi Anna
Not sure what it is but I googled it and the following link came up:
Looks like a wonderdrug for fatigue but I need to speak to MS Nurse/GP/Consultant to see whether it’s something I could take.
Take care
Pen xx
Oh and whether it’s available via prescription
Take care
Pen xx
Oh thnx Pen for the info,
Love
Anna x
Gosh, thank you SO much for all the replies. I got the real reason from an MS nurse after tearfully pleading my case for remaining on my current prescription.
It’s that stupid EU directive. My (brand new) consultant wants me off Modafinil altogether. (ie. return to my early MS days as a vegetable.) I am not going to let my body sleep all the time, or prevent me from doing anything requiring active brain cells and some energy. eg Switch on my computer and write this. Write my blog. Meditate. Look after my fur babies, get some groceries, cook, clean, even go out to a group. Then there’s the voluntary work, etc, etc…
You know, have an independent, worthwhile life!
I’ve got an appointment with the GP to find out more, including alternatives, coz this isn’t right.
I know Q10 is good, and I can self heal a bit using Reiki.
@ Crumbs - how did you fight your case? (I get my prescriptions delivered the now.)
hi,
i was diagnosed nov 29th 2012 with spms so i know how your feeling!
i have been given moafinil but haven’t got it yet, it’s being ordered.
i don’t know if it will help me but i’m praying it does as the comments from people who it has helped are amazing!!! i can’t comment though as i’m not on it yet(plse hurry up pharmacy)
i’d ask your nuero about it and see what he/she say’s
sitting in bed writing this myself (@ 2pm)
well good luck and chin up!!
ben
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