Using Stimulants in ME/CFS? The Adderall Debate!

[Rlman]

Yes, she takes it in the morning at 7am and sleeps from 11pm to 6:45 am. She does really well with it. She finds tasks easier, and does not get frustrated with herself in math. She still does art and theatre, so her creativity is intact as well. She is on 25 MG. She has melatonin, but never rarely uses it, unless she has to get up before 5AM

That's great to hear you daughter has been sleeping well on the Adderall! Thanks for the info!

 

[kangaSue]

I think this research, though limited, is very interesting. Is there somewhere I can see this explained in layman’s language? Is research pointing to amphetamines being beneficial in OI and POTS?

Haven't found anything else that simplifies the subject.

The research being limited does present a bit of a problem because most of it is coming from the same source so no one else is backing it up. Anecdotally from other PR threads, it seems to be a very individual response thing between patients and it either helps or it doesn't.

 

[AngelM]

Anecdotally from other PR threads, it seems to be a very individual response thing between patients and it either helps or it doesn't.

That is the problem with Adderall—it does not affect everybody in the same way. People who do not need the drug—or take it only to stay awake or lose weight—have a totally different experience than those for whom Adderall works. My sister has been stirring up my family for months now by insisting that I am addicted to Adderall, which is absolutely not the case. She bases her drug “knowledge” on her own experience with Adderall in grad school when she irresponsibly used it as a study aid—she remembers only how negatively it affected her. I have asked every doctor including my neurologist if Adderall is the source of my symptoms—and they have all said “absolutely not.” I am waiting for a family” intervention” to occur any day now. My sister will not leave it alone. She calls my children, who live out of state, and they have no real reason NOT to believe her. I am worn out with the drama. Any suggestions on how to handle this ridiculous situation. I’ve run out of ideas.

 

[AngelM]

@jesse's mom, have you found that taking Vitamin D supplements helps. I asked my doctor about getting a Vitamin D shot and he said it does not work unless taken in pill form. But that doesn’t make any sense.

 

[Murph]

I've some of the core symptoms of adult ADHD according to DSM-IV. I have inattentiveness - acutely.

But my close reading of the diagnostic criteria suggests I don't have adult ADHD itself. Apparently you need to have had the problems in childhood to get the ADHD diagnosis. I didn't.

Those symptoms can be brought on by other neurological problems, however, and I guess me/cfs has fried my brain enough to make me extremely forgetful and inattentive and poor at coordinating tasks.

I'd love to try one of these drugs to see if it helped me at all, but I've spoken with doctors here in Australia and it is very unlikely. You need to be referred to a psychiatrist who then needs to jump through a lot of hoops to get you an ADHD diagnosis to get the drugs prescribed. It's frustrating. I'm mild overall and getting my focus back would be a huge boost.

 

[Murph]

My sister has been stirring up my family for months now by insisting that I am addicted to Adderall, which is absolutely not the case. She bases her drug “knowledge” on her own experience with Adderall in grad school when she irresponsibly used it as a study aid—she remembers only how negatively it affected her. I have asked every doctor including my neurologist if Adderall is the source of my symptoms—and they have all said “absolutely not.” I am waiting for a family” intervention” to occur any day now. My sister will not leave it alone. She calls my children, who live out of state, and they have no real reason NOT to believe her. I am worn out with the drama. Any suggestions on how to handle this ridiculous situation. I’ve run out of ideas.

This sounds very nosy of your sister! I'm sorry that's happenign and stressing you out. Your decision to quit Adderall for blood pressure reasons will hopefully be enough to get her off your case!

 

[kangaSue]

My sister will not leave it alone. She calls my children, who live out of state, and they have no real reason NOT to believe her. I am worn out with the drama. Any suggestions on how to handle this ridiculous situation. I’ve run out of ideas.

Just as well that you get to pick your friends, family you are stuck with. Personally, I'd just tell her to eff and mind her own business.

I asked my doctor about getting a Vitamin D shot and he said it does not work unless taken in pill form. But that doesn’t make any sense.

I asked my doctor about getting a Vitamin D shot and he said it does not work unless taken in pill form. But that doesn’t make any sense.

I can't tolerate vitamin D tablets but do o.k. with mega doses of vit D as cholecalceferol (600,000 iu). Not that that helps much either as I have next to no body fat to help convert it due to malnutrition from severe gastroparesis.

 

[kangaSue]

I'd love to try one of these drugs to see if it helped me at all, but I've spoken with doctors here in Australia and it is very unlikely. You need to be referred to a psychiatrist who then needs to jump through a lot of hoops to get you an ADHD diagnosis to get the drugs prescribed. It's frustrating. I'm mild overall and getting my focus back would be a huge boost.

A lot of doctors believe much of a chronic condition is in your head so it's easy enough to get referred to a psychiatrist.

I tried this route just to see if I could swing a trial of dexamphetamine. It was unsuccessful because I didn't fit any of the strict prescribing criteria for it but they pushed me on whether or not I had an obsessive compulsive disorder and it was only in hindsight I gathered that they could have prescribed it for OCD. Any good at acting?

 

[jesse's mom]

I am worn out with the drama.

Girl, Ignore that Ugliness! She don't know you!

 

[delphis]

I also take adderall. I went off it for a year, thinking that maybe it was worsening my symptoms via the "push-crash," or causing adrenal fatigue, but going off the addy did not help. my symptoms of fatigue, brain fog, & molasses limbs got worse, and didn't have the adderall to help me. :-( I went back on addy at a lower dose after a year break, but when I started to feel a little better, I pushed myself too hard when I had some good days. I think it's related to the adderall because the Adderall made it possible for me to push. Now I have been back in bed for a couple of weeks. Next time I have a good day, I won't use it to try and "catch up" on things.

 

[jesse's mom]

@delphis Pacing is one of the hardest things I have ever learned how to do! It is so worth it over time. All the best!

 

[cb2]

I have been taking (alternating ) adderal xr 10 sometimes 5 , I can't really feel any effects of the 10 any more. it seems like maybe it makes me sleepy. my dr said it was ok to go up a bit if i wanted to. do you all think it's worth it? will I just need more and more over time, I wonder? iknow when I first started it and if I would have a cup of coffee I felt " normal" whatever that means. I didn't do very well at pacing . Now I am back to just plain exhausted again. I am more committed to pacing this time! thanks!

 

[stefanosstef]

Used to be my twice per week saviour but as I progressed into crashing in my cfs it has much more sides than benefits.Sure, I can get out of bed much easier but the more tired (during crashes) the more and the sooner I crash from the amphetamines and a migraine is almost guaranteed, and I never have migraines without it.So the irony is that when I need it the most is when it damages me the most.Looks like the more I oppose my cfs schedule of reversed circadian rhythm by using amphetamines, the worse the crash and sides.Combining it with propranolol lowers the chance and the intensity of the migraine but most times I end up taking nsaids too.

My only beneficial usage of this drug is when I am on a generally good day and I want to get out at night, because I really want and need it but I wont be able to due to fatigue.I take it late afternoon so that I can sleep 10 hours later with a bit of help from vit C(increases the excretion of amphetamines) + xanax.I do this maximum once per week.

 

[jamie13]

I know this is an old thread, but couldn't find a whole lot on stimulants.
Does anyone continue to have success with stimulants?
I tried Adderall & Provigil, and they gave me a small physical boost, but worse PEM and crashes, so not worth it to me. I didn't give them a whole lot of time though, for fear of making things worse.

 

[Judee]

so not worth it to me. I didn't give them a whole lot of time though, for fear of making things worse.

I haven't tried them although a psychologist I had to go to for my SSDI case asked if anyone had ever recommended them so I researched it a little after that.

However, like you, anything that revs me up makes me crash more. The only exception for me being the caffeine in coffee or zevia cola.

I also suspect I have ADHD so I think the caffeine in the coffee calms me and gives me a little less brain fog. I did try 6 weeks w/o caffeine and the forgetfulness was magnified multiple times over.

With the zevia, it works differently than the coffee but I can't figure out what is in there that helps. (Maybe the caffeine and the citric acid??)

It doesn't really give me any energy though...nothing does that.
It only helps a bit where my mind can override my body (veto it) and let me get a few things done.

I have to think stimulants are like exercise in a pill to people with ME.

Exercise = crash.

 

[Momentum]

Add has given me a life. It's not perfect, still looking for improvement, but at least I'm not in bed all day.

 

[Long Haul Mono]

- Provigil was way too strong, even a split dose, leading to insomnia. This med may have contributed into my falling into a relapse and worsened state that occurred in 2016.
- Nuvigil caused a serious, albeit short-lived, depressive state.

I eventually developed problems with these too.
For some unknown reason both Provigil and Nuvigil now cause me to crash.
They used to be great at keeping me (somewhat) awake during the day but not anymore.

...it's not a big loss though. They were both very expensive so I was happy to let them go.

It seems any sort of stimulant makes me crash.

 

[heapsreal]

I eventually developed problems with these too.
For some unknown reason both Provigil and Nuvigil now cause me to crash.
They used to be great at keeping me (somewhat) awake during the day but not anymore.

...it's not a big loss though. They were both very expensive so I was happy to let them go.

It seems any sort of stimulant makes me crash.

I wonder if it's adrenal fatigue. I'm not getting any punch from modafinil but if I use 5-10mg hydrocortisone it works.
So currently I'm running some adrenal and adaptogen herbs to try and rebuild them back up.

I'm doing things step by step. I was on pregnenolone and dhea but dropped the pregnenolone for awhile, thinking if it suppressed adrenals or not but will find out. Still using dhea in the morning. Hydrocortisone was on as needs but leaving it along for awhile.
Was already of astragalus morning and night.
Added Kelp in morning for thyroid.
Triple mushroom combo maitake, reishi, shitake in the morning , these and others also have immune and adaptogen effects.
Licorice in the morning to help raise cortisol.
Pantothenic acid/vit b5 for cortisol function.
Ashwagandha at night can help sleep and adrenal function.
5htp at night to raise serotonin and help sleep.
Also started a low dose ssri in the morning to help with energy and motivation. I usually find a couple of months is plenty.
Siberian ginseng I'm yet to start but this will be in the morning like most adrenal supps.
Rhodiola I will add a couple weeks after siberian ginseng.
Plus I'm always on a variety of vitamins and antioxidants, we will see . If it's a cure I will patent it and become mega rich

 

[Violeta]

I wonder if it's adrenal fatigue. I'm not getting any punch from modafinil but if I use 5-10mg hydrocortisone it works.
So currently I'm running some adrenal and adaptogen herbs to try and rebuild them back up.

I'm doing things step by step. I was on pregnenolone and dhea but dropped the pregnenolone for awhile, thinking if it suppressed adrenals or not but will find out. Still using dhea in the morning. Hydrocortisone was on as needs but leaving it along for awhile.
Was already of astragalus morning and night.
Added Kelp in morning for thyroid.
Triple mushroom combo maitake, reishi, shitake in the morning , these and others also have immune and adaptogen effects.
Licorice in the morning to help raise cortisol.
Pantothenic acid/vit b5 for cortisol function.
Ashwagandha at night can help sleep and adrenal function.
5htp at night to raise serotonin and help sleep.
Also started a low dose ssri in the morning to help with energy and motivation. I usually find a couple of months is plenty.
Siberian ginseng I'm yet to start but this will be in the morning like most adrenal supps.
Rhodiola I will add a couple weeks after siberian ginseng.
Plus I'm always on a variety of vitamins and antioxidants, we will see . If it's a cure I will patent it and become mega rich

How's it going with the adaptogens?

I never tried ashwagandha, I should look into that.

What form of licorice do you take?

 

[heapsreal]

How's it going with the adaptogens?

I never tried ashwagandha, I should look into that.

What form of licorice do you take?

I just used the iherb brand of Licorice, 1 cap per day for 3 months. I've added siberian ginseng and still use the vitamin b5 which I think is helpful. I think it's helped my mood some but have had other ongoing issues at the moment. The last month I've been doing some weight training, twice a week. Just upper body stuff. Lower body exercise is limited to knee rehab things as I had an arthroscope about a month ago.

Alot of herbal supplements I use for a month or until I run out then take a break from them and add them back later if I feel I need it. I think just like medications, herbs we can get a tolerance too.