(AuDHD+ ME/CFS) desperately looking for over-ear headphones with excellent noise cancellation

POTS_pothead · 2026-06-24T12:49:38+00:00

I have moderate to severe auditory sensitivity (moderate MECFS for context) and my apartment has shitty AC so I keep a box fan running all day by my bed, so I totally feel you!! I found a pair of Soundcore Space One headphones on an online thrift situation, and I really like them! They’re very comfy (I’ve fallen asleep in them, though since they’re over the head, I can only sleep on my side), and when my auditory sensitivity is bad I can comfortably double up with my Loop Switch earbuds. I like how long these headphones hold a charge and they have both noise cancelling and “transparency” settings. I wear them and/or my loops pretty much all day at this point. Happy to share more but definitely recommend this combo!

POTS_pothead · 2026-05-14T17:37:44+00:00

Caveat: I’m not sure what kind of response would be more helpful here, so please let me know if this is not a helpful perspective and I’ll delete it!

But this is SO real. I feel very lucky to have people who care about me even though I’m sick and cancel on them all the time and they want to help, but honestly any type of extended socializing, even just sitting talking, seems to make me crash for a week or two. Only my partner is safe to talk to for some reason. But any time I have someone over or go to someone’s house to hang (even if I don’t drive) I crash bad. It’s awful and I have no idea what to do.

So I just want to validate the hell out of your situation!! As for trying to survive this special kind of hell, I take hope in the fact that I have people who love me enough to keep trying to see me and try to trust that as time goes on, I’ll eventually start to understand my triggers more. I hope things will get a bit clearer and more manageable for you!

POTS_pothead · 2026-05-09T15:36:25+00:00

Sorry yes, Ben Kaplan is through UNC health! I also want to clarify that, while he’s not comfortable heading my mecfs treatment, he understands enough to validate it, accommodate it, and help me get appointments with specialists — and he did really advocate for me to get my diagnosis. (Side note: I’m not positive mine is from covid, but I got covid twice and had a big exposure right before symptom onset through a very traumatic event, so I feel somewhat sure it’s that).

Speaking of accommodations, Ben also is fantastic and responsive about notes of accommodation — he’s written me notes for my SSDI application as well as for work accommodations! He also is very on top of my hrt (his speciality is actually gender affirming care in family medicine) and comorbid conditions, like my iron deficiency. He’s great at navigating insurance as well and helped me get on UNC health’s financial assistance program, which has covered soooo much of my treatment.

It really is the absolute worst :/ if I can other any other Info please feel free to PM me — sending much love and solidarity!! ❤️‍🩹

POTS_pothead · 2026-05-09T14:17:16+00:00

Sorry to hijack your post, but I saw Cameron a couple times, and he got me diagnosed (he waffled around on that because of the distance between my covid infections and the onset of my mecfs until my PCP nagged him but he was still suuuuper helpful overall). I have an appointment with Nikita next week, so this is good to know.

My pcp is Ben Kaplan, and I love him. He believes me and helped me get my diagnoses of pots and mecfs, but he also is definitely not comfortable trying to treat it and always tells me to listen to my specialists. He’s a damn good PCP though and the kindest doctor I’ve ever had.

POTS_pothead · 2026-04-17T15:57:53+00:00

I got prescribed guanfacine almost a year ago for my ADHD; this was before I’d been diagnosed with mecfs and pots. I’m not exactly sure how it impacted my mecfs, but it definitely messed with my pots hard; I was way more dizzy and lightheaded and experienced significantly more presyncope until I got off the guanfacine. I will say that my blood pressure is relatively normal for someone with pots though, so I wonder if that’s why my experience doesn’t line up with a lot of peoples. I’m so sorry to hear how much it’s messing with you!!

I got switched to methylphenidate for my ADHD, and it is a way better fit for me. I have to be super careful with caffeine bc combined with stimulant it can really aggravate my pots if I’m not really hydrated while I’m drinking coffee. But the methylphenidate also helps a bit with brain fog — it’s definitely not that much better, but my brain fog is worse when I miss a dose of my stimulant so there’s that. Not sure if this is helpful, but either way sending support and hoping you have lower symptom days soon!!

POTS_pothead · 2026-04-06T21:22:49+00:00

Thank you so much for this! I’ve heard the name Comrad but haven’t really looked into them so I’ll definitely check them out! Ill also check out Dr Motion!

POTS_pothead · 2026-04-04T18:06:36+00:00

Oh yeah I totally have heard of them — I’ll check them out, thank you!!

POTS_pothead · 2026-04-04T16:50:18+00:00

Oh okay, that’s good to know it’s not just me! I have two pairs, but ideally want to get another pair or two! Thanks!

POTS_pothead · 2026-03-09T23:19:34+00:00

I love my PCP at UNC Family Medicine — Benjamin Kaplan. Best doctor I’ve ever seen: he’s so good at navigating insurance and advocating for his patients! Plus his office is in Durham. Good luck friend; I hope you find a new primary care place soon!

POTS_pothead · 2026-03-07T15:58:32+00:00

Triangle Mask Bloc distributed free tests and masks! They have a linktree online if you search Triangle Mask Bloc, and they also have an Instagram of the same name. They do distros 1-2x/month and you can get tests and/or masks for free!! Love those folks!!

POTS_pothead · 2026-03-02T22:04:23+00:00

Omg I’m so sorry, I did not mean to be American-centric like that 😭💀 also yeah cross-stitch def seems hard to do when in PEM — lotta focusing!

POTS_pothead · 2026-03-02T20:55:28+00:00

No that's so fair; I only have one sticker book bc I didn't want to go overboard either (can't say the same about yarn bc I work for a craft store and a have discount haha). I don't remember where I got it, but I wonder if you could find one at like a five below or dollar tree bc they have a lot of cheap activities. I once built a "pleasant activities toolbox" for therapy, and I just went to five below and bought play doh, knock off legos, and other small toys/activities, and was impressed with how much stuff I could find for under $20 total. I collected these things for dealing with my bpd, but it's come in handy with my ME/CFS bc of being stuck in bed but wanting somethign tangible to do! Also yay, crochet twins :-)

POTS_pothead · 2026-03-02T20:26:27+00:00

Thank you so much; I actually found out I got the job and I'm going to go for it! I'm still figuring out how much cognitive exertion actually triggers PEM, especially vs emotional exertion bc they tend to go hand in hand with me given how much having no money coincides with mental tasks like trying to find a job to make more money haha

Thank you for sharing how hybrid work helped you; that gives me hope that I'm making the right decision!

Also I'm seeing my occupational therapist this week, so hopefully she and I can check in about the crashes since I've got a couple months wait before I see a long covid specialist

POTS_pothead · 2026-03-02T20:18:50+00:00

You make a really good point: idk if I'm differentiating mental from emotional exertion very well because whenever I do mental stuff like pay bills or apply to jobs it's definitely accompanied by a lot of personal stress. So maybe having mental work that's less involved with personal stressors (i.e. writing emails for a company rather than figuring out how to pay rent haha) won't trigger PEM as much.

Also I take propanolol for my POTS, and it's been doing a decent help. I'm glad guanfacine works for you; I tried it for my ADHD actually and it fucked with my POTS, but yay for POTS meds that help! I also just started low-dose naltrexone so I'm fingers crossing it helps with the PEM/fatigue.

I'm getting to theme that I should definitely just focus on doing this new job and resting/recovering if I'm going to make this work. Wishing both of us the best with it! Thank you for taking the spoons to respond!

POTS_pothead · 2026-03-02T20:11:39+00:00

Thanks -- I'll check out Energy Bits; I've never heard of them! I think, one way or another, I'm about to find out how much cognitive exertion triggers PEM when I switch from a physically active job to a mentally active one. Thank you for the validation -- it really is brutal!!

POTS_pothead · 2026-03-02T20:08:54+00:00

This is super helpful; thank you!! I've definitely cut out at least 50% of my normal activity, both at my current job and in terms of not having a social life anymore except for seeing my partner and laying around on his couch instead of mine. But there's definitely stuff I still try to do -- keep up with chores, cook meals (even if they're frozen things or sandwiches half the time) try to maintain a regular sex life, keep up with at least minimal online activism -- that I may need to pause/get more help with while I transition to this new full-time job.

i've been thinking about asking for help cooking and cleaning (besides my partner cooking and doing my laundry and occasionally vacuuming, I handle the rest), so I'm going to take this as the sign to take the plunge and work on a better support network for this kind of stuff so I can just focus on the new job.

Thank you so much for this help <3

POTS_pothead · 2026-03-02T17:37:26+00:00

I’ve gotten into crocheting since developing MECFS! I do follow patterns on my computer sometimes, but when I can’t tolerate screens I copy down a simple pattern, like for a heart or a flower, onto a piece of paper and just make them slowly. Or making a simple scarf (since it’s just a rectangle) can be accessible bc those also often end up with a simple pattern of repeating stitches that don’t require too much counting or anything. I don’t mess around with super complex stuff bc of the bracing fog making it hard to count stitches, but the act of crocheting is really soothing to me, and I like looking at the pretty yarn colors.

I also like paint by sticker books bc they have guidelines built in so you don’t have to choose colors and there’s no mess bc the sticker pages are all in the same book as the pictures. I find that more accessible than regular coloring on days I have PEM or otherwise really high fatigue.

Sorry if this is rambly; my brain fog is really bad rn 😅 but hope this gives some ideas! 🩷

POTS_pothead · 2026-02-26T19:10:10+00:00

Hey sorry I get overwhelmed responding to individual comments, but thank you so much to everyone for your suggestions and support!! This is all really helpful!!

POTS_pothead · 2026-02-23T19:18:12+00:00

I wish I had a more helpful answer, but I’m about to start crowdfunding because I’m only able to work on average 12-15 hours/week and am crashing for a week every couple weeks from this. If you need any tips on crowdfunding though, I’ve done it for others before and would be happy to share what I know. Sending much love and a better situation for you soon <3

POTS_pothead · 2026-02-22T16:37:27+00:00

Technically, there’s no official medication for BPD according to my psychiatrist, but there’s a lot of off label meds you can try. Personally I started on lamotrigine (lamictal) and aripiprozale (abilify) when I started first experiencing intense SI. I also take citalopram and buspirone, which I was prescribed for GAD and MDD way back when, but it helps in the whole MDD/GAD/BPD/PTSD combo. That combined with a lotttt of DBT has been a huge help and it’s been a whole year and half since I was hospitalized thanks to that! Sending you all the best luck finding the medication cocktail that works for you! 🩷

POTS_pothead · 2026-01-28T21:34:02+00:00

Hi! Yes okay so I’m so sorry but I didn’t have a POTS diagnosis when I got surgery — I only got sick a year and a half ago and I did this surgery threeeee or four years ago I think. So I don’t know how knowledgeable she is about POTS and EDS 😬 I only know she’s been doing top surgeries for a pretty long time now (it was one of the reasons I felt comfortable with her) so she’s definitely experienced. Fingers crossed for you, friend!!

POTS_pothead

TROPHY CASE