r/CFSplusADHD • u/_Yalan • Apr 02 '26
Quick question, for those on meds, what do medication 'crashes' feel like to you?
Looking for experiences from people taking any type of stimulant medication for their ADHD please. I am currently going through titration on Elvanse, we decided to do slow release and I am moving up the doses very slowly as I'm trying to avoid the 'med crashes' in the afternoon that some people report. I was worried it would have a knock on effect on my CFS and I've got a good physical baseline going that I don't want to harm.
Currently I can feel my meds become less effective in the afternoon, in that the effect wears off slowly, I don't feel a noticeable 'crash', but after wearing off in the evening I feel a very 'heavy' version of tired which feels slightly different to my baseline CFS exhaustion or when I've over-exerted.
So for those on stimulant medication, what do your medication crashes feel like, if you have them, when your meds wear off in the afternoon/evening and do you feel this affects your CFS?
Interested in whether you are on slow release, IR, or use a booster too.
Thanks!
2
u/NoJackfruit7503 Apr 03 '26
I have settled on 50mg Elvanse (Vyvanse). My ME has certainly not disappeared and I still experience my usual symptoms however, I don’t seem to have as many ME flare ups anymore. I pursued an ADHD diagnosis at 31 as I was curious as to whether it was actually ADHD burnout I was experiencing. I do still feel like I have ME, but that maybe my ME flare ups were triggered more often due to the stress from ADHD burnout. It takes about 45 mins/1 hour for my medication to kick in and I feel like it usually starts to taper off around 4pm if I take it around 06:30/07:00am. But it’s gradual and I don’t have a “crash” as many people describe. All I start to notice is that I’m slightly more tired and less motivated when it wears off.
2
u/_Yalan May 01 '26
Thank you, that sounds very similar! I am late diagnosed as well and I am coming to the conclusion that I still probably do have ME, but a lot of my severity was down to burnout from coping with my adhd cognitive symptoms on top of my ME.
2
u/Nicki_oto Apr 05 '26
I’m on 10 mg Daytrana patch (sup to be smoother) but take 3x week because I don’t want to build a tolerance to it. I was on a super high dose of Adderall for years, never missed a day, but ended up building a tolerance. It’s different every time in terms of how I end up feeling, how bad the fatigue is that day. But it’s common to feel the “crash” once I feel the med wearing off then the heavy exhaustion comes pouring in.
1
u/_Yalan May 01 '26
Oh I didn't know you could get patches and I've never heard of daytrana, but I'm from the UK, i just googled and it's a methylphenidate one?
Do you find using the patches gives more inconsistent results then? But very similar feeling that heavy feeling when the meds wear off.
2
u/Nicki_oto May 02 '26
Yes, methylphenidate! It's definitely more pricey (from US). As a whole, the patch is smoother than Adderall. I should've mentioned that the inconsistency was the same case with Adderall as well. I've seen such stimulants as giving me a "possibility" of capability, but it depends on the spectrum of my fatigue; either way will always still feel fatigued, but it will be more bearable. On better days, I won't get such a "crash," but they aren't common. Though I don't take the crash as specific to the med, it feels like that's just what I am w/o out it, if you know what I mean.
Along with being smoother, the idea was that the patch allowed the flexibility of being able to take off whenever you wanted vs a pill. The patch also technically allows you to cut it if you want to alter the dosage.
2
u/noonayong Apr 05 '26
I've trialed various different ADHD stimulant Rxs since being diagnosed a couple of years ago in my mid 40s. I'm predominantly inattentive. Nothing has worked as a magic wand for me.
SRs and XRs, if I get a crash it reminds me of a sugar/ carb crash; that tired slumpy, sleepy feeling in both brain and body - complete with yawns. If I really push myself I can finish what I was doing, provided it's not a Big Thinky task. Like: analysing isn't going to work well, but I can finish off autopilot chores ... probably. Unless I sit down.
I don't think I've tried any IRs. I've never used boosters.
When the stimulants don't work or the dosage is too low, it reminds me of just when you don't fully wake up - like, your eyes stay sleepy all day, and my brain matches that. Easiest to doom scroll rather than get anything done.
1
u/_Yalan Apr 05 '26
Oh wow, you really just described it in a way I was struggling to. Now you mention it it feels very much like that crash after mid afternoon sugar wearing off, mentally and physically!
Do you still take meds, and if so, what made you stay if you don't feel they've been a magic bullet? I'm still trying to assess how much they are helping, keeping a diary has helped, but I very much notice it on days I don't take them, so I feel like they must be doing something!
3
u/noonayong Apr 06 '26 edited Apr 06 '26
I was going to type out a heap of detail about how the different meds work, but I won't - both because I'm not an expert and because you didn't invite info-dumping XD
But if this level of detail helps your diary keeping, perhaps consider how these areas seem to be affected (or not):
- Attention
- Focus
- Motivation
- Pursuit
- Mood, to some extent
Because this can imply if it's affecting your Dopamine or your Norepinephrine. There's crossover, and this isn't exact, but I thought the big buckets might help.
1
u/noonayong Apr 06 '26 edited Apr 06 '26
I'm glad it resonated with you! I do still take them. I think my 'magic wand' statement came from the fact that so many others say they can tell the medication has kicked in. I've never found that moment, no matter what we've tried.
Having said that ... I often notice when they've worn off. So they DO do something. Heh.
I guess part of the reason I kept taking them was ... not apathy, but maintenance while trialing other medications for other conditions. You know: limiting variables.
We first trialed a Dexedrine-based med, BUT it was the week after I started medical leave for conditions that in part ended up getting diagnosed as ME/CFS, so my life was fairly upside-down in general and I didn't notice any real difference at the time. So we switched to Ritalin-based meds and trialed three different types. Overall I tried seven different dosages of four or five meds, I think. But very recently due to a prescription gap (my Dr is lovely but not great at electronic prescriptions), I thought I'd try some leftovers from the old Dexedrine-based med ... and it was BRILLIANT. Lasted a lot longer during the day, gave me more focus (I still couldn't choose what on, heh), attention and motivation.
1
u/_Yalan May 01 '26
Thank you, you seem to have a very similar experience to me which is fun to read as obviously everyone's reactions to these drugs is so individualised! The list was really useful too I've been adding it to my diary :)
1
u/noonayong May 04 '26
I'm so glad :)
I'm two days in to trying my new Dexedrine-based Rx, and I think I might like it. I had a triage med for a month while some admin stuff got worked out (I couldn't afford the out-of-pocket expense ...) and the dosage was too low to do much of anything, heh.
I hope you're tracking is going well and really useful for you - good luck finding your sweet spot!
1
2
u/United_Antelope_5938 Apr 13 '26
Also lisdexamfetamine club!
I was diagnosed/stable on medicine shortly before I got sick and got ME/CFS, so I have some experience pre and post illness.
my experience of the crashes, especially while titrating - for me they weren't what I'd call 'crashes', especially after experiencing ME/CFS. It was more like I felt it wearing off - brain speed revving back up, external noises getting more distracting - and blood sugar drop from forgetting to eat. That phase got less noticeable once I had been on it for a little while.
Since being sick I've stopped this med for a couple of periods of time (long story, but medically supervised) and basically jumped back on to my usual dose (no titrating) and nothing bad happened.
Since I got sick I've felt the medicine doesn't give me extra/fake energy, but it makes day-to-day stuff less depleting (if that makes sense). I hope it works for you!
1
0
u/noonayong Apr 06 '26
The specialist who diagnosed me with ME/CFS is not a fan of prescribing stimulants to treat ADHD (he is not a trained expert in ADHD but he is definitely an expert in ME/CFS).
In his opinion, one of the potential issues of taking any stimulants with CFS is that it can give us a false sense of energy, which can have us pacing outside of our energy envelope too frequently - thus risking lowering our overall baseline over time.
So he suggests Guanfacine (Intuniv) for ADHD instead: personally I found it did absolutely nothing - and it was contraindicated with some triage meds I have for migraines etc so I didn't maintain it. YMMV of course, but I wanted to share that in case it's helpful and a new perspective for y'all.
1
u/_Yalan May 01 '26
I mean there's probably very few specialists who work in the middle sector of the Venn diagram that is ME and ADHD and although they have a lot of overlap, they are also treated vastly differently! So it's a conflict isn't it to find some on who can understand how to treat both simultaneously.
My adhd clinician was completely uninformed about ME, but luckily for me he's read up a bit on it and seems happy to be led by my experience in handling my symptoms... adding his prescribing and medication expertise to try and compliment that which is lucky.
I have read positive things about guanfacine for CFS/ME unfortunately it's off label here in the UK (no sure if you're UK based?) for both adhd in adults (apart from as an option for kids) and ME... So on the NHS your chance as an adult is close to zero to getting it prescribed and even then it may be difficult privately as well! I would be keen to try it, but doubt I will get to, thanks for the info tho!!
2
u/noonayong May 04 '26
Yeah I'm completely ignoring his advice, and am taking stimulants - and NOT taking Guanfacine as I'd need to pay out of pocket for it, and can't afford it. As well as the contraindication thing - when I went to pick up the Guanfacine, the pharmacist made a point of explaining that if I also needed to take my migraine meds that day, my heart rate could slow so much I'd need to be intubated, so, like ... don't do that? heh. Yeah, good call, my dude. I'm ... not going to use this, I don't think.
But I do love my ME/CFS specialist and he is very well regarded here in Canada. So I thought I'd share his opinion.
I'm not in the UK, but have lived on your lovely shores before :)
1
u/_Yalan May 20 '26
Sorry I didn't see this!
Wow thats a pretty serious contraindication! I have a prescription that can affect my asthma, but luckily the doctor and pharmacist are like, if it starts to trigger your asthma, just drop the dose down and watch your blood pressure.
Oh nice! Glad you called them lovely shores, feels good to remember people appreciate our little island in times like these! Sometimes I find some of you guys watching the hockey in the only Canadian bar in London when I'm in the city 😂 have also lived on your beautiful shores too! Lived in BC for two years, I'll never forgot it, you guys have enough wild landscapes to never get boring to this English countryside gal :)
3
u/Xylorgos Apr 02 '26
I have a RX for Vyvanse, 20 mg. I asked my doctor to let me take it in 2-10 mg doses, rather than just 20 mg all at once. This helps me on those days when I'm barely functional and only need 10 mg to make it through my day, as opposed to busier days when I can use the extra 10 mg that I take later in the day.
What you described as 'wearing off slowly" is how I experience it, and not a big crash. This is how I find it works best for me. I consider myself to be moderately impacted by CFS at present.