Have you tried ADHD medication? (Lisdexamfetamine)

xebex

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Yea it stopped working for me :( I’m still treating dopamine I discovered I have a COMT mutation (which turns out I’m almost the opposite of ADHD which can result in similar symptoms, bizarrely) so I take SAMe which is not without risk so I’m trying to figure out other ways of balancing dopamine more safely.
 

Fogbuster

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Yea it stopped working for me :( I’m still treating dopamine I discovered I have a COMT mutation (which turns out I’m almost the opposite of ADHD which can result in similar symptoms, bizarrely) so I take SAMe which is not without risk so I’m trying to figure out other ways of balancing dopamine more safely.
Ah I'm sorry to hear that : (. If you don't mind me asking, what's the opposite of adhd?
 

xebex

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Ah I'm sorry to hear that : (. If you don't mind me asking, what's the opposite of adhd?
Adhd is low dopamine which causes you to need stimulation/stress to take action, my COMT mutation causes high dopamine which means I’m highly functional in non stressful situation but once you add in stress (of which I am always) then you lack function causing symptoms of adhd. From what I gather you can have adhd with or without the mutation but those with the mutation are more likely to have mild adhd and more likely to be unresponsive to stimulants. I do believe (just my own theory) that with ME and the COMT mutation you’re going to get dopamine highs and lows but with ME and no mutation you’re more likely to have consistently low dopamine.
 

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! : )
Hey @xebex i remember us discussing how elvanse worked well for you but pooped out. At the time I was talking to you I think I'd been on it for about 10 days or so, unfortunately after 3 weeks of being on 30mg the effects stopped. When it did work I'd feel its effects within minutes. I then moved up to 40mg and didn't feel its effects at all for the whole month of trialing it, then went up to 60mg and felt its effect like I did with the 30mg originally almost instantly on the first day of trialling it. From that day onward it didn't work at all. Very frustrating BUT it works like a charm at 40mg for me if I don't take it for a few days and then take it for a day. Have you tried trying the med again for a day or so when you require it?

Have you had any success with other CNS stimulants? If you have please do share! 😁🙏
 

xebex

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hi @Fogbuster - it was ritalin we were talking about - I still take it (not regularly) but actually at very tiny doses, I have just had two great days taking at 2.5mg 3x a day and that was good but HR was too high, so the next day I cut the pill down to 1.25mg which is an 8th of a pill and took it 2x a day and had a great day - I walked 7000steps when normally I can do max of about 2500 but I am doing other things too. Namely the cusack protocol which seems to be helping a long with brain training(my own version that I have refined over 2 years rather than following a program) to calm the nervous system. My biggest issue seems to be thoracic instability, the dopamine alone seems to help! but the cusack protocol is also helping. I don't think i'l ever be able to take the ritalin daily though, at times I take it 2x a week and sometimes more like 1x a month. as it does poop out if it take it daily. I think I actually have ADHD aswell - it's shocking how calm I feel when taking ritalin. And I can sit in the car without yabbering on constantly my husband says it's blissful! lol.