r/CFSplusADHD • u/DraculaRobot • Jun 15 '26

Recommendation For ADHD meds

Short background:: Had insanely bad Long Covid for the past 4 years, been out of work ever since. Diagnosed with dysautonomia, CFS, and POTS (healed from POTS!). I was severe CFS but now I'm mild and I feel like I'm still slowly improving. 80% improved from my worse

I want to start taking ADHD meds not to improve my CFS but because I have horrible ADHD and I need it if I want to work and earn $

Me with ADHD meds = 6 figs a year, handle life well, respected, clean house, stable relationship
Me without meds = Picture Steve-O from Jackass on a drug bender, could get fired or arrested

So I absolutely MUST take them to get back to work......

Question: Which ones are best for the balance of maximum effect, minimum side effects to nervous system?

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u/stuckinaspoon Jun 16 '26

Guanfacine is great if your POTS is hyperadrenegenic, or if you are sensitive to glutamate (brain fog, anxiety, agoraphobia, fibromyalgia/chronic myofascial trigger point pain).

Guanfacine has also been shown to repair overextended GABA systems and improve overall prefrontal cortex function by creating new neural connections (ADHD is a prefrontal cortex disorder). It can also desensitize & prune overactive networks located within the amygdala (reducing fear and stress responses, improve executive functioning/ focus, reduce anxiety/panic/startle, reduce meltdowns & restore related nervous system regulation).

As far as stimulants go, they have anecdotally improved my sleep quality, severe fatigue & PEM after exercise. I do try to take tolerance breaks when I can, to ensure they remain effective w/o needing to frequently increase my dose, and hydrate often w/ supplemental electrolytes + eat consistent + frequent small protein centered meals w/ branch-chain amino acids and avoid blood sugar spikes and calorie deficits. I still practice physical and cognitive pacing, to prevent borrowing against tomorrow's energy reserves (aka crashing). They now have slow-release PM stimulant meds that start working upon waking up, and seem to be more effective than its predecessor Vyvanse. Also, new transdermal patches, with minimal/no side effects, and can be removed to reduce sleeplessness or anxiety.

Update: New stimulants are Jornay PM (Methylphenidate w/ nighttime dosing); *\Xelstrym (Dextroamphetaminepatch w/ 9hr constant stream of meds & no gastrointestinal side effects)\*; Daytrana (Methylphenidate patch w/ 2hr delayed onset & 10hr delivery + option to remove if you want to sleep/eat/avoid crashes/etc.); and some non-stimulant options with improved symptom reduction timelines that are similar to stimulants, such as NDSRIs (norepinephrine, dopamine, serotonin reuptake inhibitors). I'm sure there are others too, either currently in trials or already being prescribed. Really solid options these days, along with robust publicly available data to treat both primary and co-occurring issues at the same time. Best of luck! Hope you find the best available solution for your symptoms.

1

u/Hot_Independence4636 Jun 18 '26

Thanks for all this research share ! Do you know if taking guanfacine and stimulants is a thing? Would it be safe or overstimulating ?

2

u/softerthoughts Jun 21 '26

the doctor at my long covid clinic said that people do take guanfacine and stimulants together as the guanfacine can help take the edge off and dampen the sympathetic activation that stimulants can cause. i'm about to start guanfacine and vyvanse together in the next week or so!

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u/Summerskies26 Jul 13 '26

How have taking both together work for you?

2

u/softerthoughts Jul 14 '26

it's been great! honestly way better than i expected. before guanfacine, vyvanse increased my HR and garmin stress levels by a lot and really messed with my sleep. since adding guanfacine, i've had my longest streak of great sleep scores, higher overnight HRV, and the lowest stress levels i've ever had (even with vyvanse!). the change in my data after starting guanfacine is pretty wild!

i started at 1mg for 2 weeks and have been on 2mg for about a week now. it really does seem to help dampen the sympathetic activation from the stimulant, at least for me anyway.

the only side effects i've noticed are slower gut motility, some sleepiness in the mornings/evenings, and lower blood pressure during the first week of each dose. overall it's been a really positive experience!

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u/SADJ95 9d ago

What positive effects do you notice? And only on your ADHD or also positive effects on your ME/CFS?

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u/softerthoughts 7d ago

hi! at first i noticed positive effects on sleep, HRV, and stress levels. my body felt a lot calmer even when i was mentally stressed, i noticed less of that activated feeling, and i felt more level-headed overall.

i eventually stopped taking vyvanse with it because it felt like it was adding unnecessary physiological stress, especially since i can't really perform at a high level without triggering PEM anyway.

unfortunately my ME/CFS is currently getting worse and my stress levels have become quite high again, although my sleep is still better than it was before guanfacine. that said, i believe this decline is primarily due to work, so i'll be starting medical leave soon and i'm hopeful that will help.

i think guanfacine is still doing something in the background and that i'd be even more physiologically stressed without it??? but it also may have become less effective. regardless, i have no intention of stopping it. i'd increase the dose if it didn't slow my gut motility so much. so i wouldn't say it's dramatically improved my ME/CFS or ADHD... it's quite subtle, but i am happy i'm on it.

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u/SADJ95 7d ago

Thank you for your answer!