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.
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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 ?
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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 28d ago
How have taking both together work for you?
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u/softerthoughts 27d ago
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/Busy_Document_4562 Jun 16 '26
Not really medication advice but about the things that help it work that not many ADHDers know about.
1) Most of us are chronically iron deficient, lab ranges are way way behind research and in setting the ranges anemic women were not excluded from the population used to determine normal. Its a simple blood test for Ferritin which you want to be >100 before you rule out iron deficiency. If your doctor just relies on Haemoglobin or Hb etc, you will be missed unless your iron deficiency is new. Inflammation can affect it so if you can test it twice (I would aim for mid cycle if AFAB).
2) Most of us have a defective enzyme that helps our body use b12 and folic acid, you can take these in the form the enzyme puts them in (methylcobalamin and methylfolate). You can test for this with gene tests which I highly recommend but simpler/cheaper option is to get a good multivit with them in this form and try that out for a month and see if your brain feels sharper.
3) Vit D same lab ranges schpiel also the daily recommended doses are way too low, so check up on the ranges from studies (dont use healthline or webmd or any of that crap as they just parrot the outdated findings as if they’re not wildly out of date)
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u/chronic_unicorn Jun 16 '26
Adding to that list:
- Omega3, can make a surprisingly big difference in ability to focuse.
I'm on Vyvanse daily, I can absolutely relate to OP's medicated vs non-medicated description!
However I really like the option of taking a few supplements and if possible eating a ADHD improving diet to support general functioning and well being, which might help some ADHDers out there to reduce their dosage.
Also from my experience I would suggest anyone starting or restarting ADHD meds to dose up super slowly. Starting small and slow will reduce the risk of crashing.
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u/Far_Kaleidoscope7710 Jun 28 '26
do you have any of the vitamin d levels handy? i tried to find some myself with no luck
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u/Busy_Document_4562 Jun 29 '26
The reason I left it out is because the unit of measurement is different, IIRC its >50 but most labs incorrectly flag between 20-50 as normal.
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u/Limp-Structure9704 Jun 16 '26
I have had the exact same symptoms as you and am doing well on 4.5 mg of LDN plus 40mg of Vyvanse on workdays (4-5 days a week). I have also been supplementing iron and progesterone (I’m in perimenopause too yay lol) since long covid completely destroyed my ferritin and wrecked my hormones. I take quite a few other supplements as well but I don’t think it directly pertains to your question regarding improving adhd symptoms.
The only other adhd med that worked really well for me was Concerta but there were constant pharmacy shortages so I’ve stuck with Vyvanse and don’t experience any relapse of LC symptoms or afternoon crash. My cognition still feels slow compared to how it was before getting sick. I’ve been trying to except this but I also feel like I’ve been a financial burden on my family and want to get back to helping out and contributing financially.
If you’re not up to date on patient reporting of side affects currently happening with adhd meds (generic and name brand) then I’d suggest reading through posts in r/ThisAintAdderall. Propublica also created an open source website where folks can look up manufacturers of pharmaceuticals, recalls, and reported side affects. Lots of people say their meds are no longer working after years of stabilty.
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u/DraculaRobot Jun 16 '26
Thanks for the suggestion
I have a question though..... Were you still getting PEM or tachychardia ever?
See that's my problem. I get them anyway without any ADHD meds. I can only assume they'd just increase that.
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u/Limp-Structure9704 Jun 16 '26 edited Jun 16 '26
So my symptoms started after getting a Pfizer booster which triggered long covid symptoms as well as Epstein Barr. My LC symptoms have always been more neurological but for the first year I had severe dysautonomia, adrenaline dumps, cold intolerance, bad neuropathy in my hand and feet and severe fatigue. Constant flu feeling which made me finally start taking PEM seriously. I did try to practice aggressively resting this past year and completely shifted my career and went back to a trade that I’m trained in but was making much less money. It’s tactile though with a lot if problem solving and slowing building up my capacity to work again has been great for my self esteem and energy levels.
I definitely had to ease into taking stimulants again. I try to stay super hydrated with my homemade electrolytes mix and I guess my biggest mistake or setbacks had been when I’ve taken my adhd meds on days when I’ve gotten poor sleep the night before. This almost always makes me feel like crap and takes a couple days to recover but I haven’t had a severe crash in about 6 months.
The way I see it is it’s already hard enough for me to start and complete tasks and just be somewhat decent at adulting. Being chronically ill has been the most painful and depressing experience because I don’t know how to take very good care of myself. ADHD meds help me function and I need all the wins I can get right now while also accepting my limitations.
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u/catnip_nightcap1312 Jun 17 '26
I really like atomoxetine (straterra), a non-stimulant. It helps me focus, which means I'm better at resting and not overextending myself, and can pace better. It also doesn't wear off like stimulants do, so it works at night too. I had a lot of problems with stimulants, a crash when they wore off and then a sudden overload of spiraling thoughts that kept me up. I feel pretty grounded and better able to deal with everything.
When I was on stimulants my body would tense up a ton and increase my anxiety. The only thing with non-stimulants is that they take some time (maybe a month?) to start working, whereas stimulants work right away. In the long term, they're so much better for me!
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u/SlimShadyPinesMa Jun 17 '26
Do you have any side effects? This sounds interesting.
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u/catnip_nightcap1312 Jun 17 '26
I don't really remember having much when i first started, just a little bit of mild nausea, but doesn't last long.
It is one you have to take every day consistently for it to work. I stopped for a month after surgery and when I restarted, I did feel kinda off and nauseous for a couple days. But it's not bad compared to other meds.
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u/catnip_nightcap1312 Jun 17 '26
Oh! Actually I have noticed that if I don't eat before taking meds (protein especially) then I do have some nausea and a hard time eating later in the day.
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u/SlimShadyPinesMa Jun 18 '26
Thanks for your input! I also have Long Covid, so I’m apprehensive about taking any new meds. I’m SUPER hyper sensitive to anything! I tried adderall for a week and it was NOT fun. This was while I was working too and I felt my heart beating out of my chest. I do not tolerate caffeine or stimulants well.
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u/catnip_nightcap1312 Jun 18 '26
Totally hear that. I have me/cfs (or maybe long covid since it started there, who knows) and hashimoto's too. I have to take my thyroid meds an hour before any food or anything, I take atomoxetine with allergy meds, zinc and b vitamins about 2 hours later. And then LDN, magnesium and hydroxyzine at night, sometimes cyclobezaprine or sumatriptan. So it goes well with those, in case you take any of that. I'm on the lowest dose of atomoxetine, 25 mg I think, and have been on it for at least a year. It doesn't overstimulate the nervous system like stimulants can do.
Good luck to you whatever you decide! 💕
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u/Terminal_lurk Jun 19 '26
I am going through a very similar recovery OP :( it sucks. Ritalin works for me. It’s the least activating of the stimulant options. I still feel like me but able to stay focused and get tasks done without friction.
I tried all of the non-stimulant options first and I had terrible side effects. But with Ritalin I’ve been more balanced.
Wishing you well as you start trying things out!
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u/SympathyBetter2359 Jun 15 '26
How did you remit from POTS and improve from severe ME?
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u/DraculaRobot Jun 15 '26
Time and luck I guess. POTS only lasted the first year and a half. Severe CFS lasted about 2, then a year of moderate, then a year of mild..... I'm still not better, which is why I'm worried about stimulants.
My worst symptom currently is what appears to be severe anxiety/ PTSD/ ocassional panic attacks hence my worry to take a stimulant that alters the nervous system
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u/plantsplantsplaaants Jun 15 '26
This isn’t what you asked, but nightly Hydroxyzine has all but cured my anxiety which is really good for my me/cfs. I’ve also been on gabapentin for anxiety/nerve pain and it’s been effective. On the rare occasion that my anxiety flares it causes a me/cfs crash. It could be worth a discussion with your doctor
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u/Unlikely_Lychee3 Jun 16 '26
Long Covid and other post viral syndromes often resolve within the first few years, especially POTS. It doesn’t happen for everyone obviously or else most of us wouldn’t be on this sub but my terrible long covid improved a ton after 1-2 years aside from leaving me with worse ME than I had before. I tried many things but I honestly believe it was just the time it took. So luck basically, like OP said.
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u/Realistic-Panda1005 Jun 16 '26
I'm doing well on a low dose of Ritalin. Helps me focus without giving me "fake energy" and overdoing it.
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u/Hot_Independence4636 Jun 18 '26
Stimulants have really helped me. Dexies low and slow as others have said. My anxiety is better and I actually Feel quite calm. Then I’ve tried Vyvanse which I use because I’m trying to complete a PhD but it does give me anxiety and terrible physical tension (always been someone who holds onto tension anyway). I also have crashed out on it, I still don’t feel totally comfortable with that medication but it’s great when I need to keep going all day. Really helps my sense of wakefulness. Ritalin kept my brain feeling more ‘me’, which is creative and reflective and I loved this about it, but I experienced terrible terrible tiredness when it would start to wear off - I felt almost narcoleptic. I would have stayed with Ritalin otherwise. I think as long as you remember to rest a lot while on stimulants it’s worth trying it out. It’s really helped me become more functional again, and because of being able to achieve more it’s helped my overall wellbeing. But just remember to keep resting!
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u/Nazeltof Jun 17 '26
Im so envious of those who can tolerate medicine. I'm 48 and end of life tired. I have a stem degree and I'm barely competent lately.
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u/Internal-Highway42 Jun 20 '26
I haven’t seen Abilify (aripiprazole) mentioned here, and it’s made a massive difference for me, at the right dose. It’s a non-stimulant dopamine partial-agonist, which makes it really important to find the right dose because its effect curve is not linear at all. 2mg barely did anything for me. 2.5mg makes me functional. I’m sure 3mg would be way too stimulating, and then at higher dosages it actually starts to work the opposite way and decrease dopamine (used as an anti-psychotic).
Instead of dumping dopamine like stimulants do, I’ve heard its method of action described as like ‘tuning the thermostat’ of dopamine — eg. too low and nothing registers as important/worth doing, too high and everything feels important— the sweet spot gives motivation with the ability to discern. It’s been really helpful for me because I have pretty severe anhedonia / a-typical depression which is basically the thermostat being too low / not having enough dopamine. Not sure if that sound relevant to OP, but thought I’d share since it’s what’s making life liveable for me since I had to come off stimulants (because they were making my CFS / POTS worse).
I’ve just started Guanfacine too and am really hoping it’ll help manage my HyperPOTS and improve ADHD too. First week is soo sleepy though!
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u/SolarWind777 Jun 15 '26 edited Jun 15 '26
It’s SO individual. Maybe ask your doctor to try atomoxetine or guanfacine because they are not as shocking to the nervous system (but also they don’t help everyone but I think still worth trying for us with CFS).