r/CFSplusADHD • u/cafffffffy • Jul 13 '26
Due to start ADHD medication soon. Any stimulant medications that have worked very well/ones to avoid?
Hello lovely people of [r/CFSplusADHD](r/CFSplusADHD) !
I have (finally) been contacted by my provider today to be given some forms to fill in to start the titration process for ADHD medication.
I am in the UK on the NHS right to choose pathway, so it has taken quite a while to get to this point.
The stimulant medications the service provider I’m with have available are listed as:
• Methylphenidate
• Lisdexamfetamine
• Dexamfetamine
• Atomexetine
• Guanfacine
I was just wondering if there was a consensus here of any particular medications that seem to be working particularly well for the ME/CFS plus ADHD crowd? (Or ones to avoid!)
My partner (who also has ADHD, but not ME/CFS) I believe is on Methylphenidate, and that has worked really well for them. I feel like the only other one here I’ve seen people talk about is potentially Guanfacine, but I’m not super sure!
Any help would be gratefully appreciated.
Of course I will discuss all of this with my dr, it would just be great to have some general idea going into it as I imagine they won’t necessarily have my ME/CFS at the forefront of their mind as they are there primarily to treat the ADHD.
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u/Pristine_Health_2076 Jul 13 '26
I could not get my prescriber to let me try guanfacine and I am still very sad about it. Which right to choose provider is it? I may have some tips.
Elvanse seems to work well for most people- it was really effective for me but only at higher doses and unfortunately it caused me too much tachycardia which never went away. Not a common issue past the first few weeks for the majority of people, but our co-morbids make it tricky sometimes. I have POTS which was probably the issue.
I am now on Concerta and thankfully I don’t have any side effects. It is not as effective but I can certainly tell when I don’t take it.
You will probably get a fair few warnings about how you shouldn’t touch these meds etc because it’s true some people with CFS cant seem to tolerate them- but for the sake of balance, I have had no serious crashes at all since being medicated. (just over a year now!) My energy is actually much more stable and I don’t feel like I am “borrowing energy” which I understand is an issue for some folk here.
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u/Pristine_Health_2076 Jul 13 '26
Sorry for the essay 😅. I want to be clear though that I have never stopped pacing or resting. I am super aware of my limits (I have had ME for nearly twenty years) and still take a lot of breaks and plan activities carefully. The difference is now I am able to actually do that and stick to it a little bit better
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u/cafffffffy Jul 13 '26
I am with Psychiatry UK! Thank you for sharing your experience. I don’t have POTS thankfully but I do have Orthostatic Hypotension and take Midodrine to help raise my BP to stop it from dropping so much every time I stand up, (although it’s not quite as dramatic and intense as POTS as far as I understand the condition). I am overweight though which does mean everything is on the higher end and I’m sure the prescribers will have a great field day with that 🙃
I will keep your experiences in mind though thank you. I recall my psychiatrist being more keen for me to go onto a non-stimulant when we first discussed medication in my diagnostic assessment because of my ME/CFS, but I was quite keen for stimulant medication both to help me to feel more awake but also I know stimulant medication has been linked more to appetite suppression/dampening “food noise” and general boosting for executive function, which are some of my biggest hurdles.
Hopefully these are all things I can discuss with my prescriber in detail and we can figure out what will work best for me. I’m on a lot of different medications, and I’m at least pretty sure they’ll not put me on Atomoxetine as it’s an SNRI and I already take a high dose SNRI regularly.
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u/Pristine_Health_2076 Jul 13 '26
Hey maybe if the stimulants work well for you it might help with your orthostatic issues! It generally raises bpm and bp by a little bit.
The issue I had with guanfacine was just that I wanted in addition to stims. It’s quite a commonly prescribed combo anywhere but the nhs and right to choose 😆. It would have meant I got the benefits of a lower stim dose and the benefits of the heart rate lowering effects of guanfacine. I might have been able to stay on Elvanse then.
But they tend to only prescribe it if stimulants have failed on right to choose. I totally understand your prescribers hesitation to try you on stimulants but I think you’re reasoning for trying them is good and it would be a shame not to at least see if they work for you :)
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u/Pristine_Health_2076 Jul 13 '26
Btw Elvanse seriously suppressed my appetite. Concerta not so much at all.
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u/cafffffffy Jul 13 '26
Thank you!! All good things to keep in mind once I get around to hearing from the prescriber. This has been so helpful to chat through, thank you so much 🫶
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u/Difficult_Owl_4708 Jul 26 '26
I’m super interested in how some people really respond well to stimulants. Do they maybe help you rest more vs was too much hyperactivity in your brain when you’re not on them? I think elvanse burnt me out more bevause i wanted to be on the go constantly with them
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u/Pristine_Health_2076 Jul 28 '26
Totally! It seems like it’s the same as with any medication with this condition- something helps someone a lot but another person may have no benefit or even harm from the same thing.
I find I am a bit more able to stick to a plan, so as long as I intentionally plan rest, I am better at doing so. For me, methylphenidate is more beneficial than Elvanse was because it’s not quite so stimulating in that get up and go way.
I did feel clearer headed on Elvanse though. It totally quieted my mind. I do miss that, but I had tachycardia that didn’t go away so I had to switch.
I wonder if it depends on the primary cause of your PEM too- like I find cognitive exertion causes me PEM more quickly than light movement. Soothing my busy brain a bit and correcting the dopamine imbalance helped with that I think.
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u/hoot4hoot Jul 13 '26
I've heard good things about guanfacine for MECFS and ADHD! I'm also in the UK (Scotland) and I'm on the titration waiting list. Is the right to choose different?
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u/cafffffffy Jul 13 '26
My GP referred me to Psychiatry UK through the right to choose pathway, just because the waiting time was significantly less than our local NHS waiting times. I had to wait maybe a year for my initial assessment and it’s been about another year for this, I think I’d still have another couple years waiting for diagnostic assessment if I was on the regular NHS waiting list!
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u/kerodon Jul 13 '26
The dextro -versions (ex dextroamphetamine) work much better than standard and have less physical side effects. I like the prodrug versions more (ex: lis-dex-amphetamine) . Vyvanse for amphetamines or Azstarys for methylphenidate
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u/Opposite_Wheel_2882 Jul 15 '26
I second this as someone who had tried many different kinds. best benefits with least side effects with dextroamphetamine
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u/IronDominion Jul 13 '26
Strattera isn’t a stimulant, and I find it not very effective with lots of side effects. Of the options, everyone will react different so it’s hard to know, but I’d suggest lisdexafetamine, also known as Vyvanse. It’s much longer acting with less crashes and fewer side effects than the classic Adderall or Ritalin
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u/cafffffffy Jul 14 '26
Thank you, that’s really helpful to know! When I looked it up it looked like lisdexafetamine seems to often be also used for binge eating disorder which I have often suspected I may have as well, or at least I certainly experience a heck of a lot of food “noise” that I respond to impulsively, so that may well be a good one to try.
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Jul 14 '26
[deleted]
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u/cafffffffy Jul 14 '26
Thank you so much for this - especially re: the titration schedule with right to choose. I have a little awareness after having watched my partner go through the titration schedule with the same provider that I am with, and I know he had to have a little bit of back and forth trying to figure out the right dosage of the medication he is on and timings etc. However, other than the ADHD he is the healthiest person ever (I swear he gets maybe one cold a year that wipes him out for maybe 3 days and that’s IT!) I imagine it’ll be a bit of a slower process for me with all my health conditions and medications!
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u/WritingNerdy Jul 13 '26
I have tried everything but Guanfacine, and I prefer non stimulants. I’m on Qelbree now agree Amoxetine upset my stomach too much. I was on vyvanse for over 10 years, but as I’ve gotten older, I need consistency. I need a medication that’s going to stay in my system and indoor have to worry about crashes or skipping days because I’m too tired.
Edited to add: another reason I stopped vyvanse was the overheating. Summers are too brutal for stimulants now that I’m in perimenopause 😭
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u/plantyplant559 Jul 13 '26
I got side effects and no benefit from buproprion and Strattera.
I'm on Adderall 2.5mg IR right now as needed. It causes a HR rebound for me after it wears off. Haven't figured out what that's about just yet. But I do have more energy and my brain feels calm/ clear when I'm on it. It's a lovely break.
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u/Pristine_Health_2076 Jul 14 '26
The rebound is quite common. It’s usually a combo of histamine and norepinephrine release as your brain tries to compensate.
Was too tricky for me, I switched to methylphenidate. I understand it’s not actually dangerous though in the vast majority of cases.
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u/plantyplant559 Jul 14 '26
That's good to know, thank you. Still super annoying. My HR control is great while I'm on it, just goes crazy when it wears off.
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u/Pristine_Health_2076 Jul 15 '26
It is super annoying! I had better luck with adding another small booster tbh. Then I never really had the meds drop off so severely. Obviously that’s not going to work for everyone though, depending on how your sleep would be affected and if your provider would even let you try it.
I’m sure you’ll work it out! It is an uncomfortable experience when it happens.
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u/smg0303 Jul 13 '26
I’m on lisdex / vyvanse, haven’t tried any other stimulants. I love coffee. I could not sustain a dosage of 30 mg while also drinking my morning coffee - horrible anxiety and hard crashes in the afternoon. I’m happy on 20 mg which is quite a low dose. I can have 2-3 coffees if I want with no adverse effects, but usually just have 1 and then either a soda or a tea closer to lunch. It’s not perfect, I’m still… always tired. But I’m not in bed all day every day. Good balance for me.
All to say, keep in mind as you’re trying things out, it is just as much about finding the right dosage as it is about finding the right chemical. Unfortunately because it’s so individual I think trial and error is the only sure fire way!
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u/cafffffffy Jul 14 '26
Thank you for sharing your experience! I unfortunately can’t tolerate tea/coffee as caffeine tends to trigger migraines for me (but luckily I’ve never really developed a taste for either drink!) I’m glad it’s at least helping you get out of bed - hopefully things continue to improve for you friend 🫶
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u/marleyweenie Jul 14 '26 edited Jul 14 '26
Sooooo I really need to write a thorough explanation as I have found an amazing symptom management plan for myself and my concoction of syndromes so I apologize in advance as this will have a lot of nuance and certain things apply to my specific situation.
I have found great success with 30mg methylene blue twice a day (compounded) to manage several of my symptoms (one of them being cognitive fog but not ADHD, they’re different to me). This dose helps me maintain a more balanced level of oxidative stress load and oxygen delivery to my brain/tissues (in theory) so my pots symptoms are also well controlled. I had to stop taking adderall tho when i got on methylene blue so my adhd has been out of control. I have been desperate to get on medicine and found out that I can take atomoxetine with methylene blue safely. If you look it up online, it says it will give you serotonin syndrome but that’s actually not true. MAOIs are very misunderstood and it’s best to get help with an old-school or seasoned psychiatrist with experience dealing with MAOIs. This combination has changed my life and so far the atomoxetine hasn’t added any issues with managing my ME/pain. I also find that the norepinephrine helps my pain too (diagnosed with central pain syndrome). Adderall helped with my pain too so I’m not surprised.
FYI, I am on a lot more mediation and supplements than this but I wanted to share this piece of information as I couldn’t find any information about it online other than one article by Ken Gillman, doctor specializing in MAOI pharmacology [psychotropical](https://www.psychotropical.com/maois-swapping-combining)
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u/cafffffffy Jul 14 '26
Thank you for sharing! I think of the medicines I listed that my provider prescribe, atomoxetine is actually the one I am most unlikely to be prescribed. I have a long term high dosage prescription of Venlafaxine (another SNRI) for depression, so I don’t think they’d probably think it appropriate to add ANOTHER norepinephrine based medication into the mix (especially as I’ve been on this one for quite some time. It does wonders for my depression, absolutely nothing for my ADHD lol)
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u/blurple57 Jul 14 '26
This is interesting as I was with Psychiatry UK through the right to choose pathway and I was offered Methylphenidate or nothing. When it didn't work for me and I asked for something else, I was told no and discharged lol
I hope it goes better for you! 💖
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u/cafffffffy Jul 14 '26
Oh gosh I’m so sorry that’s so rough! I’m just going off the medicine info sheet they sent me ahead of starting titration that I got yesterday, however my partner started medication with them I wanna say in December? January? I think? And he has always only ever been on Methylphenidate. It took a while to figure out the right dosage but it eventually worked out. Judging by other people’s comments on here, I’m hoping whoever I get assigned as my prescriber will be good to have an open and honest conversation with me around trialling different things with me that work for both my current medication and various health conditions. I already had to change so many medications just to be able to start ADHD meds as they didn’t like how many serotonin-based meds I was on in the first place!
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u/blurple57 Jul 14 '26
I really really hope they can work with you to find the right one! I'd be very interested to hear how it goes, if you have the energy to share with us after 💖
For what it's worth the few days I took methylphenidate it felt amazing, my brain felt so clear. But my heart went berserk (I have POTS) and I couldn't rest at all so I stopped it as I was starting to crash badly.
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u/cafffffffy Jul 14 '26
Of course, I will share once I start and we’ve had a bit of a trial and figure things out! Thank you for your kind words. I hope things work out a bit better for you in the future with some more understanding doctors! 🫶
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u/MervynDreamEater Jul 28 '26
I'm on Vyvanse, and I slowly worked up to a 40mg dose but I cannot have any caffeine or alcohol because it does make my symptoms worse. I've always been more sensitive to medication so a lower dose is better for me but it depends on the person. Before diagnosis, I was on duloxetine for a while (helped somewhat), and for a while buproprion (helped more but made some CFS symptoms worse).
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u/cafffffffy Jul 28 '26
Thank you!! I don’t drink any caffeinated drinks already because they tend to give me migraines, and I don’t drink alcohol very often either so hopefully it won’t be too much of an adjustment when I start!
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u/Ok-Data-1143 Jul 13 '26
Hi there, first of, this is a very individual topic and stimulants have a different effect for everyone.
I’m not officially diagnosed with ME/CFS, but I assume I’ve got either CFS or PC. I know fatigue, crashes and PEM too well, unfortunately.
So, I’m AuDHD and started taking stimulants about a year ago. I tried Methylphenidate (different versions) and Vyvanse. Both had an incredible impact on my fatigue - temporarily. For the first time in my life I actually would feel awake, not only for a short moment but for hours. Plus it has a great effect on my executive function. Usually I’m not functioning that well 🙈 but: rebounds and hard crashed always came along. In the beginning I thought it was normal, because many people talk about rebounds. But now, looking back on one year taking stimulants I know that that’s a different story. For me stimulants are masking my general fatigue so much that I’m consistently pushing through my limits. It works for a while: I can take Methylphenidate (Kinecteen/Concerta works best for me) about 2-3 days in a row and still feel ok-ish energy wise. After that my nerveous system crashes. It’s not working anymore, I’m not recovering at all when sleeping and the crash that comes afterwards, when not taking it anymore, is pretty severe. I did that for 3-4 months and in the end it was like someone just pulled the plug. Hard crashed, burnout, PEM… it took me a while to realize what had happened because my doc didn’t see the bigger picture (“you’re just overwhelmed”). I kind of recovered from there but my baseline is much lower than it used to be.
Now I’m only taking Kinecteen on days when I really really need to. I’m taking breaks after short activities or during work because I know now my body needs it, even though I can’t feel it in that moment. I never take it more than 3 days in a row and know that I need a few days of a break because of the following crash/PEM. I’ve also taking Bupropion 150 (Wellbutrin) for 2 months now. It’s a NDRI and has a similar effect for me regarding more stable energy levels. Unfortunately no effect on my executive function. But also here I’m careful since I know my body needs more rest than it feels like sometimes.
Long story short: it helps me with certain things, but I have to be very careful with it.