Looking for info on stimulants in CFS

[purrsian]

Hi guys. My doc recently mentioned using stimulants in CFS and I said I'd never looked into it but wouldn't mind doing some research on it. It's been hard to find anything more than the basics, so was wondering if anyone here had any good info or links to share? I'm in Australia, so I'm not sure what is and isn't available here.

Probably what I'm most interested in is what are the pros and cons of different drugs? I also have POTS and have read that they may help with vasoconstriction. I have no issues with sleep, but LDN has helped improve my sleep quality even more. I have a lot of daytime sleepiness lately, muscle fatigue and cognitive dysfunction. I really can't find much info on what med is best to try first, or even anything about differences between them at all.

Thanks for any info, looking forward to learning more

 

[Alvin2]

From what i have read Modafinil and Armodafinil have little effect on ME/CFS (not surprising since this is not a sleep disorder) but some have had success with Dexedrine, though long term amphetamines cause a lot of harm which can include permanent brain damage and cardiac arrest. Also its not technically approved for ME/CFS so many doctors would likely be hesitant to write the prescription for this off label use considering its a controlled substance in many countries.

 

[Skippa]

I imagine stimulants with CFS bring short term gains followed by a one way ticket to crash city, major PEM... they don't create energy out of nothing...

 

[Valentijn]

I imagine stimulants with CFS bring short term gains followed by a one way ticket to crash city, major PEM... they don't create energy out of nothing...

That's what the anecdotal reports say. I think there was also a stimulant + proprietary supplement trial which showed no benefit?

 

[lansbergen]

That's what the anecdotal reports say. I think there was also a stimulant + proprietary supplement trial which showed no benefit?

Taking a srimulant with a deaease not overdoing is the first commendment????

 

[perovyscus]

Using Fukuda criteria, dextroamphetamine improved attention and executive function.

1/3rd of patients found methylphenidate helpful at least occasionally.

Which was an extension of this trial.

Personally, I've found dextroamphetamine (pure, not Adderall) at 5-10 mg to have the least side effects of the 100+ medications/supplements I have tried. Basically it is the only drug that has not made me feel worse than baseline. I'm not even sure if it works.

 

[alex1989]

I am prescribed provigil (modafinil) and dexamphetamine, which I cycle to avoid tolerance (with plenty of off days). Both provide large, temporary increases in mental energy and have been enormously useful for me (I can't study at all without them). When I was first prescribed them I crashed all the time as a result of the drugs, before I learnt that the key to avoiding PEM is be resting when the effects wear off (approx 8 hours after taking, for provigil, and 4 hours for the dex). I am moderate/relatively high functioning, fulfill CCC, have mild POTS, and was not able to tolerate them at all when I was more severe.

 

[Carl]

I use L-Aspartic Acid added to my protein to counter the more sedating effects of some amino acids. It has some mild stimulating effect but is not like many conventional stimulants. It has quite a few benefits for CFS including promoting ammonia detox. It will not work miracles but every little helps IMO.

 

[me/cfs 27931]

That's what the anecdotal reports say. I think there was also a stimulant + proprietary supplement trial which showed no benefit?

That would be The Synergy Trial.
http://thesynergytrial.org/
http://solvecfs.org/preliminary-results-from-synergy-trial-released/

There was no statistically significant outcome difference between the patient and control groups.

My personal experience with being prescribed Ritalin/Adderall/Vyvanse over several years is a gain in short term functioning at the expense of long term health. My ME/CFS significantly worsened on stimulants, and although I've been off them for 3 years, I have yet to recover. I'm now 95% home bound.

Be warned that long term stimulants, even prescribed and monitored by a doctor, can cause permanent physical and cognitive damage. In my experience, it was definitely not worth the short term increase in function.

Yes, I was able to work a part time job with prescribed stimulants for a few years, but then I was left homebound with significant measureable cognitive deficits.

Also, having ME/CFS while taking stimulants is simply a horrific experience. Managing suicidal thoughts and mood swings is quite difficult at times. Addiction was definitely never an issue.

Vyvanse had fewer side effects for me than Ritalin or Adderall. I still keep low dose Vyvanse 10mg which I use a few (perhaps 5) days a year when I must function.

 

[Valentijn]

I use L-Aspartic Acid added to my protein to counter the more sedating effects of some amino acids. It has some mild stimulating effect but is not like many conventional stimulants.

I recently started having a few sugar-free mints with aspartame in them in the evening, and got some pretty bad insomnia shortly after. It was really weird - it would be 4am and I wouldn't feel sleepy at all, even though I usually can't stay awake past 10pm. I was exhausted, but with no desire or ability to sleep.

I stopped eating the mints and the insomnia stopped immediately.

 

[Carl]

L-Aspartic acid is not itself the same as aspartame which is manufactured from phenylalanine and aspartic acid. It does not occur naturally, it has to be manufactured. Aspartic acid and phenylalanine are present in most protein and do not spontaneously form aspartame, it does have to be manufactured.

I am not dismissing that aspartame might of caused your sleep problems but I have not had any noticeable problems from l-aspartic acid. It is not always enough to prevent sleepiness because the effect is not all that great but the idea is that it should counter the calming/sedating type effect of things like glycine, taurine etc. This is to be expected in the quantities which naturally occur in many proteins. With it's other purported benefits for me I make use of it. I do only add it to protein mixes and I rarely use it at any other time.

Being type 1 diabetic, aspartame was promoted as being a miracle sweetener while I was at college many years ago and what I read about it at that time made me avoid the stuff. I never consume anything containing aspartame or any of the more recent artificial sweeteners. I avoid them all.

 

[Skippa]

Is stevia any good?

 

[VitaminK2]

I'ved used modafinil and armodafinil on and off for a few years now. For me it doesn't always work very well. I tend to end up mentally tired but physically stimulated. It does me no good if my mind is still groggy because I just end up being an zombie. On a good day if my sleep ended up being okay then some modafinil will help.

50-100mg seems to work the best with some diet soda. 200mg is the typical dose (modafinil) but that tends to give me a overstimulated feeling and makes my mind feel like its in an vice grip.

I think improving my sleep helps out the most but I still haven't completely figure that out. Stimulant use won't last because eventually you'll be completely exhausted and start crashing out out bad.

 

[purrsian]

Thanks for your replies. I'm aware that the biggest issue would be PEM and would ask to start at a lower dose than recommended and take it intermittently as some of you have said. I wouldn't mind having it available for those "must get through" kind of days (someone mentioned something like that above but I can't find who). I do realise it wouldn't be a fix, just so desperate for any way to help me do things and my doctor is running out of ideas.

My sleep is the best it's been in years, but my daytime sleepiness and cognitive dysfunction is at it's worst it's been in years and I don't know why. So tired of this dumb illness

 

[VitaminK2]

Have you gotten a sleep study before? If your sleep is good and your doctor is willing to prescribe (modafinil, adderall, etc) then it wouldn't hurt to try. It just seems like from people with cfs that is feeling like crap already taking stims is just putting an bandaid over an wound that is bursting with blood.

 

[Alvin2]

Have you gotten a sleep study before? If your sleep is good and your doctor is willing to prescribe (modafinil, adderall, etc) then it wouldn't hurt to try.

Thats funny, i hate to be the one telling you this but amphetamines are not harmless. You can google it
Modafinil and Armodafinil are safer though they are wakefulness promoting agents, which is not the cause of ME/CFS which explains why they work so poorly.

 

[alex1989]

Thats funny, i hate to be the one telling you this but amphetamines are not harmless. You can google it
Modafinil and Armodafinil are safer though they are wakefulness promoting agents, which is not the cause of ME/CFS which explains why they work so poorly.

If you have problems with mental stamina/energy, they can be very useful, if used in smaller doses and with a strategy to avoid PEM, as I and others on the forum have found. They obviously don't treat the root cause of ME, but both classes of drugs provide increased amounts of neurotransmitters that many PWME are probably lacking, as some researchers have speculated (Lipkin most recently).

 

[purrsian]

Have you gotten a sleep study before? If your sleep is good and your doctor is willing to prescribe (modafinil, adderall, etc) then it wouldn't hurt to try. It just seems like from people with cfs that is feeling like crap already taking stims is just putting an bandaid over an wound that is bursting with blood.

I've never had a sleep study before. My doc suggested it so I think she'd be willing to prescribe it if I wanted to try. And yea, just a bandaid sadly!

If you have problems with mental stamina/energy, they can be very useful, if used in smaller doses and with a strategy to avoid PEM, as I and others on the forum have found. They obviously don't treat the root cause of ME, but both classes of drugs provide increased amounts of neurotransmitters that many PWME are probably lacking, as some researchers have speculated (Lipkin most recently).

If I try it, I'm definitely trying small doses and factoring in PEM. I would prefer to use them minimally, for example on special event type days that I can't miss, or on the day I will go to college next semester if I'm struggling. I'm not studying this semester because I just couldn't make it to class (which is necessary due to practical components).

If I do try it, is it ok to just try once a week initially, so you can have a better gauge of how it's affecting PEM? I also have an activity monitor on my watch which is great for estimating my actual activity level for the day (rather then what I think, because you feel so capable of doing more when you're feeling well!). I thought this might help me to avoid taking the meds and excitedly over-doing it, if I keep an eye on my watch's tracker.

Off to do some research on side effects and long term effects now. I'm so thankful that we have the internet to help us learn more about our options so we can make informed choices. Definitely want to know the risks that come with the benefits of anything I try!

 

[Alvin2]

If you have problems with mental stamina/energy, they can be very useful, if used in smaller doses and with a strategy to avoid PEM, as I and others on the forum have found. They obviously don't treat the root cause of ME, but both classes of drugs provide increased amounts of neurotransmitters that many PWME are probably lacking, as some researchers have speculated (Lipkin most recently).

If you wish to try them go ahead, some ME/CFS patients have responded to the strangest things, but what i have said in this thread is still technically correct

 

[alex1989]

I've never had a sleep study before. My doc suggested it so I think she'd be willing to prescribe it if I wanted to try. And yea, just a bandaid sadly!


If I try it, I'm definitely trying small doses and factoring in PEM. I would prefer to use them minimally, for example on special event type days that I can't miss, or on the day I will go to college next semester if I'm struggling. I'm not studying this semester because I just couldn't make it to class (which is necessary due to practical components).

If I do try it, is it ok to just try once a week initially, so you can have a better gauge of how it's affecting PEM? I also have an activity monitor on my watch which is great for estimating my actual activity level for the day (rather then what I think, because you feel so capable of doing more when you're feeling well!). I thought this might help me to avoid taking the meds and excitedly over-doing it, if I keep an eye on my watch's tracker.

Off to do some research on side effects and long term effects now. I'm so thankful that we have the internet to help us learn more about our options so we can make informed choices. Definitely want to know the risks that come with the benefits of anything I try!

Yes, you could certainly just try them once weekly at first. I find that they mainly help with mental energy, but they can help a lot (in my case, I go from being able to study for 20 minutes a day, to 2-3 hours). I think about them as allowing me to 'steal' energy from the end of the day to be used towards study, so when it actually gets to the end of the day and the drugs wear off I find I need quite a lot more rest than if I had not taken them.