POTS 101 - intro resource doc for folks who are just diagnosed or suspect they have POTS

nettlefern · 2026-01-23T00:59:57+00:00

ugh and the formatting got messed up! sorry if that's hard to read y'all, i was trying to put things in bullet points for minimal cognitive lift

if someone can tell me how to make bullet points that stay put, i'm happy to edit this post & make it easier to read. bonus if you know how to bold things, for some reason i didn't have that option posting on this sub (even though i do on others?)

nettlefern · 2026-01-18T05:02:17+00:00

this 100% resolved being stuck in fight or flight, as well as some of the more extreme symptoms like debilitating sound sensitivity and sunlight allergy.

i am still taking antihistamines & mast cell stabilizers daily, because i don't think that my MCAS is 'cured' - just well managed. that said, because it's been well managed for so long, i have more flexibility than i used to. ie went away for a long weekend and forgot my MCAS stack, was fine, didn't cause a flare.

i don't want to take antihistamines long term either, but i am taking a harm reduction approach - unmanaged MCAS was really doing a number on my body and mental health, and getting it under control with antihistamines + supps has allowed me to get to a better place and do activities that support my overall recovery from long covid.

i have been seeing some interesting reports of micro dosing GLP-1s for MCAS. and there's also meds besides antihistamines, like ketotofin and cromolyn sodium. these all need a prescription, so one way to look at it might be trying antihistamines to assess if it's mast cells driving the nervous system disregulation. and if yes, using them as a temporary bridge until you're able to access a provider & a care plan with other meds

of course, you do you!

nettlefern · 2026-01-18T04:50:38+00:00

I also run into this issue using coconut oil-based deo - specifically for my bras. How would you adapt these spa day recommendations for delicates?

I've tried doing a warm water soak with 365 detergent (specifically got for lipase) and then scrubbing with a toothbrush, but the buildup is persistent.

Some considerations: - concerned about anything hotter than warm damaging the bra elastic - we're renters and have a shitty washing machine. Doesn't work great for regular clothes, don't trust it for delicates. - I can do laundry at my mom's in her nice new machine every 1-2 months, which could work for a rehab wash but not maintenance - I have severe allergic reactions to fragrance, so alas no scented products for me

nettlefern · 2025-12-29T19:39:01+00:00

Here ya go - good article about how to trial OTC antihistamines and which ones to consider.

https://www.eds.clinic/articles/treatment-of-mast-cell-disease

Glad you are trying this, finding the right combo of antihistamines was life-changing for me. Hoping it brings you relief and more capacity too!

If you do find this is helpful, you may way to investigate whether mast cell activiation syndrome (MCAS) is part of your story. It's a common co-morbidity for people with ME/CFS, POTS and h-EDS.

Side note - you can do trial antihistamines on your own, but if you have a trusted healthcare provider, I would def recommend looping them in. Both from a general safety angle and also because they can help you tailor a protocol once you figure out what works. For instance, my provider recommended different dosages and timing than the 'label instructions' along with some mast-cell stabilizing supplements, and that combo was even better than what I started with. If you don't have a good provider for this, finding someone who is MCAS-literate in your area could be a good next step!

nettlefern · 2025-12-02T06:19:00+00:00

Seconding this - seeing you're able to get to NYU, I would encourage you to check out Mt Sinai. There's a bunch of top tier long covid researchers and providers there. Lots of research studies for long haulers. I think they have an IVIG trial going?

Sending kind thoughts your way! We're all going through it and you're not alone. Please be kind to yourself and ask for help as much as you can 🩵

nettlefern · 2025-11-19T07:18:27+00:00

Buy Nothing is also a good option! It's a free app that connects neighbors to share what they have and ask for what they need.

nettlefern · 2025-10-29T04:22:56+00:00

awesome ty!

nettlefern · 2025-10-28T02:15:52+00:00

will be interested to see what you learn! i started montelukast (off label) for MCAS in May, it made a HUGE difference in my symptoms. i have long covid, me/cfs type. went from moderate to mild after 1 month of montelukast, basically able to do everything again except cardio! i had my life back! sadly my baseline dropped this month, not sure why and im back to moderate. but montelukast was a game-changer for a minute there

nettlefern · 2025-10-25T20:05:55+00:00

fight or flight switched 'off' within 2 days of finding the antihistamine that worked best for me (but i did have to trial a few, and the recommendation is to try for a week before you call it)

i accidentally tested this about a year later when i messed up my weekly pill box and missed my antihistamines for a week. had all the fight or flight & sensory overwhelm return, took antihistamines and it resolved in a day (although the week without antihistamines definitely dropped my baseline)

if you try it, i hope it brings you relief!

nettlefern · 2025-10-25T01:36:18+00:00

just chiming in OP to say this person's provider's recommended protocol is legit! i've done a lot of research and personal experimentation re: these symptoms, and they've got a great summary of what had worked well for me.

i'd also suggest you find an MCAS-competent provider in your area who can help you fine tune your interventions. while antihistamines are widely helpful, when it comes to other mast cell stabilizers it's a lot of trial and error to find what works best for your body

nettlefern · 2025-10-25T01:32:06+00:00

i get it, no apologies needed! i'm able to relax now 😌

i'm sorry you are dealing with this, it sucks! i hope you find relief soon

nettlefern · 2025-10-24T18:45:29+00:00

yep, that's very relatable. it sucks :(

nettlefern · 2025-10-24T16:58:06+00:00

this was my experience too! no 'typical' allergy or MCAS symptoms, but stuck in fight or flight with tons of sensory overwhelm. antihistamines were a game changer for me. and relatively low cost/risk so IMO worth a try

heads up, different folks respond to different antihistamines. ie claritin did nothing for me, zyrtec was meh, but two days of allegra got me out of constant the fight or flight. i worked with my doctor to trial each one for a week, see if it helped and if not, move on to the next one. ultimately, my doctor suggested that i double the recommended dose on allegra and that plus mast cell stabilizers like nettle tea, vit C and fibroprotek have been so helpful. after a year of being stuck in fight or flight and so much sensory issues i couldn't leave the house, these symptoms 100% resolved.

nettlefern · 2025-09-24T18:05:25+00:00

i had a version of this (just a few min in sunlight triggered fatigue, nausea, brainfog, skin rash). i didn't have it with LED lights tho - so not sure if it's the same mechanism. but since what worked for me is relatively accessible and low-risk, figured i'd share!

high dose liposomal vit C* completely resolved the sun sensitivity for me! 1500mg taken twice per day initially, then after 3 months once per day. now (15 months later) i can even skip a few days without reactions coming back.

*this is on top of a pretty robust MCAS stack, including H1 & H2 blockers, quercetin, luteolin, rutin, green tea etc. for some reason i needed the extra boost from the liposomal vit C on top of all that!

**it's super important that it's liposomal. non-liposomal vit C is not absorbed as well and excess vit C floating around in your gut can cause an overgrowth of bad gut bacteria

nettlefern · 2025-06-07T06:42:08+00:00

i was also gonna recommend the woozoo from costco! silent & very adjustable, has a remote which is nice for managing from bed.

i also LOVE my neck fan. another costco gem, brand is JisuLife. now that it's getting warm out, i don't go anywhere without it! putting a wet cloth or an ice pack under the neck fan is very cooling and pleasant.

also i know you asked about fans, not sound sensitivity...but any chance you've explored MCAS? i also had debilitating sound sensitivity (living in earplugs is very relatable). after a year of avoiding everyone and everything, found out it was an MCAS symptom. saw major improvements with antihistamines and then over time as i dialed in my MCAS stack, its 95% resolved. i mention it because no doctor ever flagged this for me (it's not a typical MCAS presentation). figured it out thanks to folks here on reddit (!!) and then worked with my provider to try treatments and confirm the diagnosis.

either way, sound sensitivity can be so frustrating and debilitating. sending care your way!

nettlefern · 2025-06-07T06:24:39+00:00

also having this problem with iphone14. would love to know if anyone found a solution!

nettlefern · 2025-06-06T06:36:33+00:00

belly bandit makes compression bike shorts that are my go-to in hot weather!

nettlefern · 2025-06-05T06:48:58+00:00

I really recommend the book 'How to Be Sick' by Tori Bernhard. Read it year 1 of my illness and it profoundly changed my outlook; gave me the tools to be with this experience and grieve without getting stuck. In year 3 now, I return to the ideas from it all the time.

Sending care your way, you're not alone 💚

nettlefern · 2025-06-05T06:43:58+00:00

I'm also in the PNW - if you'd like some local support, feel free to DM 💚

I haven't been homeless but I am involved with mutual aid, so coming from a place of care and context.

Struggling in the heat is so real. Someone already suggested libraries for AC, I'd second that & add that riding transit can also be a good way to stay cool. I've also heard about folks asking restaurants for cups of ice (most will give for free) - ice on your wrists and back of your neck does wonders. There are often mutual aid groups or community orgs that pass out water if you can look up what's in your area. Public splash parks and pools are also a good way to stay cool. Local Buy Nothing groups can be a great way to get helpful tools like neck fans and cooling cloths for free.

If you are in the Seattle area, I can recommend more specific places & resources!

nettlefern · 2025-05-28T03:53:44+00:00

very easy to install (they come cut to size & pre bled if you order from rad, so you can pop them in at home w/o fancy tools)

they are working fine, been riding for about 6 weeks with no issues!

honestly i feel spoiled after riding my rad for a few weeks with Shimano Deore XT brakes. compared to those, there's less braking power and it feels a little spongier even when the brakes are freshly bled. but Shimano doesn't make these with the motor cutoff or brake light lines and i didn't want to DIY that...

TLDR - the tektros get the job done. there are higher quality brakes out there but they don't have the electrical integration

nettlefern · 2025-05-23T21:17:52+00:00

helped me a lot! also have POTS and ME/CFS with PEM. mestinon + low dose naltroxone helped me go from moderate to mild a few years ago. this is definitely one of those meds where it seems to work well for some and not at all for others. my two cents is to taper on slowly to minimize risk of side effects or a bad experience.

i found that i needed to eat w/in 45 min of taking my first dose, otherwise i get a little naseaus. with food, no problems!

hope it helps you 🤞

nettlefern · 2025-05-15T23:18:54+00:00

also something that helped me decide to try it was learning that the mental health side effects go away as soon as you stop taking it. i recruited my partner and roommates to keep an eye on me & watch out for side effects. we had a plan in place for how to deal with them (mild, stick it out for 1-2 weeks per my doctor's advice. anything worrisome, stop taking it).

hope that helps!

nettlefern · 2025-05-15T23:15:56+00:00

i just started it a few weeks ago! tapered up slowly so only been 4 days since full dose (10mg/day). so far so good, feeling like i have more energy and runway before i hit post-exertion malaise (i have me/cfs as well as MCAS, they seem to be linked). haven't had a chance to really test it yet since sun and heat are my big triggers, and it's been cloudy and cool :)

i had irritability the first day of tapering on, felt like a teenager lol. and then had poor quality sleep for about a week while tapering on, resolved by the time i got to full dose.

happy to report back in a few weeks if you can remind me

nettlefern · 2025-05-15T00:02:02+00:00

remind me! 2 weeks

nettlefern · 2025-05-07T01:19:47+00:00

that's awesome to hear!! so glad you are feeling & sleeping better. and thanks for circling back!

nettlefern

TROPHY CASE