Have you tried ADHD medication? (Lisdexamfetamine)

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My boyfriend has ADHD and thought some of our symptoms sounded similar. He started looking up links between the illnesses and found that lisdexamfetamine, an ADHD medication, has actually been tested on ME/CFS patients with pretty good results. It is a small sample size though.

https://www.healio.com/news/psychia...h-chronic-fatigue-syndrome-cognition-and-pain

Has anyone here tried lisdexamfetamine or any other ADHD medication? If so, did it work for you?

Does anyone know if there are recognised links between the illnesses?
 

bensmith

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I did a bit of adderall but was afraid to continue. I need something to calm my mind though.
 

Judee

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Most of the things I've heard are that they do help but then they burn PWME out faster because they rev up the system--I think of it as exercising without actually doing the exercise only it leads to a more deeper, damaging PEM. Some people said they were much worse after using them and never recovered.

I would try other stimulants first like caffeine and nicotine gum to see if something like that calms you. I have to have coffee at least twice a day including once before bed--or I have a hard time calming down for sleep. Coffee doesn't give me any energy. I don't think it ever has. It just calms me and lessens my brain fog.
 
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Ah @Judee that's disappointing to hear. I hoped they would work differently. I'm very sensitive to coffee - it makes my ME/CFS symptoms much better temporarily, then much worse for up to a week.
 

Judee

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Sounds like classic adhd.
Classic ADHD with an ME/CFS twist, unfortunately.

Ah @Judee that's disappointing to hear. I hoped they would work differently. I'm very sensitive to coffee - it makes my ME/CFS symptoms much better temporarily, then much worse for up to a week.
I'm sorry. I'm thinking that the ADHD drugs might do the same. :(
 

Judee

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@PracticingAcceptance, I just saw this mentioned on another thread where they were talking about the best kind of magnesium:

Additionally, the glycine is in itself an amino that promotes calm and balance .....
I think @Mary has also had some success with it too. You could search the threads for her posts. You could try something like that to see if it helps. It would probably be gentler on your system than the medications.

I plan to try it as well at some point.
 

xebex

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If you have ADHD and ME/cfs I do believe stimulants could be helpful. I have been taking Ritalin on and off for 2 years and although I do find it helpful I can only take it sporadically or then it does the opposite of what im trying to make it do. It helps me to relax and rest, and allows me to be more functional. if I have adhd it’s mild but I’m likely neurodiverse in some way. Ritalin has been the only med that has helped. I don’t over do it on it and if I do push a little harder than usual it doesn’t have any additional bad effects sometimes it seems that’s I can push a little harder without crashing. There have been some trials with Ritalin that have showed some positive effects but it had a very high placebo effect so the trials didn’t continue. I wouldn’t recommend Ritalin to everyone but I think there is possibly a sub group of people who can benefit while others probably will get worse, it’s a big risk to take. It hasn’t been a long term improver for me although some people did actually recover in the trial. Bizarrely I find it most helpful ina crash it’s like it flips my CNS back to a better function level. But if I take it too many days in a row (more than 2 or 3) I get POTs like symptoms.

https://clinicaltrials.gov/ct2/show/NCT01966276
 
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Judee

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@PracticingAcceptance, @bensmith, someone on another thread mentioned this product: https://www.amazon.com/Garden-Life-...d=1&keywords=minami+epa&qid=1613151145&sr=8-2 (Sorry, I don't remember why they mentioned it.)

Anyway as I was reading this and other EPA supplement reviews, a lot of them mention this helping with ADD and ADHD.

I need it w/o lemon (citrus allergy) but couldn't afford that one right now. However, I found the Omega Via version on ebay for about $10 less from a seller there and just purchased it to try.

My brain has felt so swollen lately and it makes thinking so difficult. I need to make decisions now and that is being hindered. Plus, I have no motivation. I had tried dopa mucunas in the past but that makes the headaches and swelling worse so wanted to find something more gentle and that actually supports the body in other ways too.

I have had issues in the past with my liver and fish oil but maybe this one will be okay. I also know fish oil thins the blood, which may or may not be a good thing for people with orthostatic issues, which I also have somewhat.

Anyway, will try to remember to do an update after I have tried it for a while. I just need so much to be able to think clearly right now.

Edit: Here is the post I read the other day: https://forums.phoenixrising.me/threads/fish-oil-epa-dha-ratio.82861/#post-2321460
 
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Most of the things I've heard are that they do help but then they burn PWME out faster because they rev up the system--I think of it as exercising without actually doing the exercise only it leads to a more deeper, damaging PEM.
I took a low dose of Nuvigil for several years, and this was my experience as well. It didn't lead to lasting damage, but in the end I decided that the side effects weren't worth it.
 

Learner1

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"LDX ... is an inactive prodrug of d-amphetamine that extends the half-life of d-amphetamine to allow for once daily dosing. D-amphetamine acts primarily to increase the concentrations of synaptic dopamine and norepinephrine. Metabolism of LDX to d-amphetamine occurs when peptidases in red blood cells cleave the covalent bond between d-amphetamine and l-lysine. D-amphetamine is then further metabolized by CYP2D6. Excretion is primarily through renal mechanisms. In clinical trials, LDX demonstrated statistical and clinical superiority over placebo in reducing binge eating days per week at doses of 50 and 70 mg daily. Commonly reported side effects of LDX include dry mouth, insomnia, weight loss, and headache, and its use should be avoided in patients with known structural cardiac abnormalities, cardiomyopathy, serious heart arrhythmia or coronary artery disease. As with all CNS stimulants, risk of abuse needs to be assessed prior to prescribing."
From: https://www.tandfonline.com/doi/abs...scroll=top&needAccess=true&journalCode=iemt20

This seems somewhat dangerous. One can increase dopamine by taking tyrosine or increasing BH4, without the unwanted side effects.

Screenshot_20210301-211919.png


Screenshot_20210301-212156.png
 
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Judee

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Hip talked about saffron for depression in this thread but there is some info on the net about it helping with ADHD too.

Just thought I'd add that to this thread. It does suppress appetite which some of us don't really need to do but I still thought I would try some and just ordered a very small amount of the spice to try.

Also he mentioned manganese helping to promote dopamine. I think my ME/CFS may possibly be influenced by Lyme type infections.

B. Burdorferi uses manganese so wondering if it depletes people of that thereby lowering their dopamine. ???

I don't want to supplement manganese a lot right now though. I don't want to be feeding the bacteria if that is one of my issues.

However, I wanted to mention it anyway though because that may be what is happening for some of us who suspect Lyme in our disease history and can't focus or seem to motivate all the time.
 

Pyrrhus

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someone on another thread mentioned this product: https://www.amazon.com/Garden-Life-...d=1&keywords=minami+epa&qid=1613151145&sr=8-2 (Sorry, I don't remember why they mentioned it.)
Yes, I took Minami Nutrition's pure EPA product for a couple of years and really liked it. For brain fog, I found it superior to other brands of fish oil, probably because most brands of fish oil use a heat-based process to extract the fish-oil, which can trigger a fermentation/oxidation process, which degrades the fish oil even before you buy it. Minami uses a cold-extraction process.

But Minami is always re-branding their products, and their products are on the expensive side. In the U.S., they now go by the brand "Garden of Life".

There is also a prescription-only pure EPA product called Vascepa. For some reason, I found Minami's 500mg pure EPA product noticeably superior to the prescription 1000mg Vascepa for cognitive dysfunction.

I contacted both manufacturers to try to figure out what chemical differences might exist between the two products, but both manufacturers told me that they were the same ethyl ester version of EPA. The only difference is that Minami extracts the EPA from fish, whereas Vascepa is chemically synthesized. A bit perplexing...
 

nerd

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I contacted both manufacturers to try to figure out what chemical differences might exist between the two products, but both manufacturers told me that they were the same ethyl ester version of EPA. The only difference is that Minami extracts the EPA from fish, whereas Vascepa is chemically synthesized. A bit perplexing...
Interesting. The Pharmepa RESTORE from igennus contains 1000mg of EPA, also re-esterified from wild anchovy fish oil. In Germany, a pack of 60 softgels costs ca. 20 EUR. They declare it's tested for PCBs, dioxins, and heavy metals.
 

Fogbuster

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Just to let you know, a low dose of vyvanse (30mg) prescribed for my new diagnosis of ADD has helped my orthostatic intolerance, CNS inflammation pain feeling from about a 7 to a 4, improved my social ability from about a 3 to a 6 and turned down my constant chronic sympathetic activation from merely existing, eating, going for walks from about a 9 to a 5. Hasn't really helped my concentration, apathy, brain fog too much so far. Seems a promising start to say the least though! : )