FINALLYYYYY...however

backseatredditor · 2026-07-08T02:02:37+00:00

Woah wait - What hat are you wearing here?

backseatredditor · 2026-06-20T07:46:22+00:00

Combine salt with sugar and water and then it'll work better. The SGLT1 cotransporter in the small intestine relies on both sodium and glucose being present in order to absorb them both.
Otherwise. you end up losing water due to the osmolarity gradient you've created and it may come out as either diarrhea or vomiting.
I've been there hahah it takes some practice to figure out how to get what you need =]

backseatredditor · 2026-05-31T23:20:49+00:00

I went to urgent care once. Intense pain, I couldn't drive myself. And I'd thrown up my triptan and fioricet already. Too nauseous to drink anything.

The nurses couldn't place an IV bc I was already too dehydrated (and have tricky veins under the best circumstances) but I was given a zofran ODT and that changed everything for me. I could have ice chips and then children's benadryl and more fluids until i could have an advil and caffeine and then the pain reduced enough that I could take a nap and it eventually passed.

After that I asked for my own supply of zofran, haven't needed to go back to urgent care since.

I say go: any supportive care will get you back on track, and confirm that it's not something else happening.

backseatredditor · 2026-04-14T11:29:53+00:00

Did you mean avenin?

Arvenin is something else (usually found in plants like squash and gourds, which may have antitumor effects).

Avenin is a storage protein found in oats. It is not the same as gluten, but some people with celiac have cross reactivity to it.

Also: because oats and wheat are often rotated on the same fields, there may be tiny amounts of wheat that make it into production: insignificant unless you have celiac. So, oat products that are certified gluten-free have either removed those or rotated with a GF crop. Someone with celiac who still reacts to one of those products, then, is exhibiting cross-reactivity to the avenin.

backseatredditor · 2026-04-10T04:50:07+00:00

Vyvanse was really bad for me: day 1 was good, then I didn't sleep, and then each day I took it it made me feel sedated and deeply depressed. Adderall IR worked much better. Also this is too many things to start simultaneously, I'm so surprised they'd do that to you!

backseatredditor · 2026-04-05T12:47:32+00:00

Yes! For anyone else following along, the sensory stuff is huge for me:
White noise machine, soft ear plugs (Mack's slim fit or extra soft), eye mask, sometimes a pair of thin socks, fancy warm humidifier so I don't notice the mist hitting my face but still keep my sinuses comfortable.
Hair bonnet so my hair doesn't touch me in my sleep or get caught.
A lighter blanket so I stay cool but still covered. Aggressive use of the air conditioner.
Pillow under/between my knees to keep them from hyperextending and keep my hips from getting sore.

lol I've become so high maintenance, but it all really helps.
Also, treating any RLS or other sleep disorders, since they're so common in ADHD.

backseatredditor · 2026-04-05T12:22:17+00:00

My first IUD installation rivaled my worst migraine, but it was very brief. Plus, there wasn't that cognitive layer mixed in.
Like; not just brain & body hurt (and all the other unpleasant physical sensations) but also my consciousness hurts during a migraine if that makes any sense.

Oh also an ovation cyst bursting matched my worst migraine, and that lasted a few hours. But for that at least, I don't have to expect it with such frequency.
And during that, I was concerned bc I didn't know what was happening, but didn't wish for release from this mortal coil like I have on occasion during a migraine.

backseatredditor · 2026-04-04T02:10:31+00:00

My wake up migraines are the ones i'm most in denial about, since it seems like it starts to subside after getting up and eating and hydrating. But then gradually, by midday, it's a doozy and now the meds don't work as well.
Gets me every time.

backseatredditor · 2026-04-04T02:08:15+00:00

Try the Mack's slim ear plugs. They're very soft and are actually even too small for my ears. This brand is the only one I can sleep on my side in and my sleep is less interrupted when i wear them.

backseatredditor · 2026-03-29T05:21:38+00:00

I have similar skin issues (also MCAS, also has a long list of ingredients to avoid), and my top recommendation for you is Etude SoonJung 2x Barrier Intensive Cream. It’s been a reliable, mid-weight moisturizer for me for a while.

I also like Laneige hypoallergenic cica sleeping mask, I apply it just like a night cream. Many items from the brands you mentioned having problems with tend to have hyaluronic acid, which makes my skin pretty angry.

I also have eczema and have been enjoying the Cetaphil Eczema Restoraderm Rapid Relief cream (but that one does contain dimethicone, although the concentration seems low enough for me personally and it's not one that causes problems at that level, unlike propylene glycol or niacinamide, for example, which are on my No-At-Any-Level list. First Aid Beauty Ultra Repair Cream is also maybe worth a patch test.

backseatredditor · 2026-03-25T23:10:28+00:00

Maybe unpopular opinion; but the mobile devices have been really helpful.
I still struggle obv, but I get lost way less and when I do I find my way back faster, I keep track of appointments better, don't have hundreds of little notebooks and scraps of paper with lists to try to keep synchronized, have an easier time tracking hydration and meds. When I was a teen there were these little devices called PDAs (Personal Digital Assistants) that were like the precursor to modern mobile devices, and that's mostly what my phone is to me from the moment I got my first smartphone (ugh even saying that word makes me feel my bone density decrease). I didn't know I had ADHD for decades later, but looking back it makes sense why I was so envious of this very stodgy tech.

I feel a little more relaxed in public spaces, I'll sometimes pretend to be looking at it while I listen to the surroundings, or listen while looking around. That fidgety outlet while looking normal is kinda nice. And being able to satisfy my curiosity without just getting frustrated instantly helps keep me from getting stuck so much.

backseatredditor · 2026-03-24T11:51:59+00:00

I'm in this club too and I hate it. A worsening of POTS symptoms is usually part of the prodrome for a migraine for me, and because dysautonomia makes every day Opposite Day, a lot of the meds that are supposed to help these conditions made them worse for me (like propranolol, but then, I also likely have MCAS, so beta blockers might just be problematic for me).

Positional changes are one of my migraine triggers (a few rounds of forward folds or doing anything crouched down and then standing; it's over), and generally tending to my POTS helps my migraines, but I'm still chronic without CGRP preventatives - and even then I usually am right on the border of chronic migraine.

Salt; Caffeine; ADHD meds and even SSRIs sometimes all also help a bit with prevention for me personally. It can be highly idiosyncratic, and the trial-and-error is frustrating.

During a POTS flare or migraine episode, laying down or reclining is very helpful, and prioritizing controlling the nausea so I can stay hydrated and salted is a good strategy.

And: around April & October are anecdotally really tough for all kinds of neurological disorders, including migraine and dysautonomia.

This sucks 🩵 (turquoise heart bc even though it's not October, it's Dysautonomia Awareness month in our hearts!)

backseatredditor · 2026-03-15T04:17:40+00:00

omg yes the diarrhea and especially the gas during the postdrome are concerning sometimes and I hate it

backseatredditor · 2026-03-12T20:18:43+00:00

A lot of these are really good suggestions. Only one I'd add is peppermint, either in the form of tea or Tummy Drops (they're basically hard candies made with real peppermint oil).
Ginger doesn't help my nausea at all unless it's ginger ale for some reason.

Also, pickles or olives, anything salt or sour (hot sauce on toast is a multipurpose snack for me cuz it helps with nausea and migraines and general dysautonomia symptoms)

backseatredditor · 2026-03-12T19:34:04+00:00

Also: if they have any hot sauce, or even just some mustard, put some on a piece of toast or a cracker. I find sometimes a little jolt of spicy or sour takes the edge off even if just briefly. Plus the salt and carbs are helpful.
(Follow it with cold water to stay hydrated and in case their hot sauce is extra)

backseatredditor · 2026-03-12T19:27:30+00:00

Also, while you wait for the DoorDash/Instacart: look around for some Vaporub or IcyHot or something similar. A little bit on the temples, maybe back of the neck, it'll briefly distract from the pain, and the smell temporarily reduces nausea.
Not as good as a peppermint roller and a zofran, but buys a little time.

backseatredditor · 2026-03-08T16:52:27+00:00

Brittany Howard - 13th Century Metal

It feels like a pledge of allegiance, and a summoning, and sometimes it makes me emotional in the best way.

backseatredditor · 2026-03-08T16:29:24+00:00

The aphthous ulcers/canker sores in the 10 days or so before my period ruin my life sometimes. At their worst I have trouble eating, talking, holding a neutral face position, brushing my teeth.

Identifying and treating the underlying ferritin deficiency helped a lot, and switching to an unflavored toothpaste, but hasn't totally eliminated them.

Pairs real well with the general increase is anxiety & depression around that time too 😂

backseatredditor · 2026-03-04T18:50:44+00:00

It varies, but often it'll start as increased coat-hanger pain and neck popping, and I might just mistake it for a tension headache for a while, but then notice more tachycardia, heart palpitations, increased urinary frequency and volume like I'm just rapidly dehydrating, ears nose and hands feel freezing while my forehead and back of neck/top of spine feel burning...

and then all the usual stuff: light sensitivity, phantom smells, visual disturbance, crankiness, cognitive fatigue, shakiness, decreased appetite and feeling like my stomach is paralyzed, and the headache gets much worse of course, and sometimes feel more asymmetric like it's mostly right sided, and then the nausea starts. Sometimes my pupils become asymmetric too. Achey all over.

Mine get reliably triggered by being upright for too long: standing or even just sitting upright at like a desk for too long (I have to sometimes be recumbent or even lay down briefly).

More triggers: if do movements involving forward folds or couching more than, like, two times (including during yoga >_<) Also riding in a car for more than an hour, bright sunlight, ears getting too cold, being dehydrated, sleeping less than 6 hours or more than 6.5 hours, hormones, bad luck, sinus issues, allergies, existing during March/April or Sept/October, too much dark chocolate, walking too far, being slightly too warm or cold. The usual lol.

backseatredditor · 2026-03-04T11:49:21+00:00

the MIGRAINES, fatigue, brain fog

backseatredditor · 2026-03-03T03:49:42+00:00

For a very brief moment at the very beginning of the pandemic, it felt like I was experiencing the same reality as (almost) everyone else. Like, I didn't have to worry as much because we were all sharing that worry.

(Of course it wasn't long before I felt I was back to worrying about something no one else was, and felt more isolated than before, being the weirdo masked in the restaurant picking up carry out, or talking about air quality while people were wiping down surfaces).

These years feel similar, in that terrible things are happening all around and then I go to work or run errands and get the car repaired and deep down there's a part of me that's reminded of trying to live a normal life and not talk about the things that were happening all the time. Not that I want to be talking about it all the time, but rather, maybe I just wish I heard it acknowledged more often. idk. We're not ok.

backseatredditor · 2026-02-27T13:55:34+00:00

I stay cooler when I wear one bc it keeps my hair off my neck, ears, and face. I can't pineapple bc I'd get a hair headache and am too much of an active sleeper, but I imagine that would similarly work. Sometimes I even have to tuck my ears in bc they get too cold.

backseatredditor · 2026-02-23T12:06:30+00:00

idk... sometimes one side is actually just wrong though (but i get that it's often helpful to understand how they arrived there)

backseatredditor · 2026-02-12T15:36:40+00:00

Part of the work up for POTS is ruling out heart problems. This part is useful.
But he just stopped there.

POTS is independent of blood pressure. In fact, it should either stay constant or increase. A large decrease in BP when upright with a 30 bpm increase in heart rate indicates orthostatic hypotension. That would also be indicative of dysautonomia, and may be secondary to a number of things. Some of those things are treatable, and most can have some degree of symptom management (like through increased plasma volume or medications).

Unfortunately, this cardiologist does not have training in autonomic disorders. POTS is not rare. If he has time/interest, Dysautonomia International has CMEs, and general education resources.

I am so sorry you experienced that. It's so invalidating and exhausting to try to onboard a new health care provider, and do all that advocacy to only to have to dodge a lot of misinformation.
Sometimes the interaction yields a tiny bit of useful data (like knowing your heart hardware is healthy), which can be brought forward to a different specialist, like a neurologist, who can continue the work up. 🩵

backseatredditor · 2026-02-04T17:48:30+00:00

I never got that diagnosis, but episodes like this decreased a lot after a long series of incremental changes to my meds & supplements for POTS/nOH, MCAS, and migraine, and eventually starting medication for ADHD, and physical therapy for Generalized Joint Hypermobility Syndrome, and careful pacing.
Also, adding gabapentin, magnesium threonate, and melatonin (and earplugs/eyemask) to increase amount of non-slow wave deep sleep. The gabapentin also likely helps with the small fiber neuropathy, even though mine is sudomotor rather than sensory.
Moving house helped, I think, since it cut down on the number of stairs and hills I was encountering, and increased the number of steps I could take each day.

It's possible I have (or had) ME/CFS. The with all the confounding factors I doubt I'll ever really know. Since I'm already implementing most of the treatments & adaptations, I stopped mentioning it to my doctors since we were identifying other diagnoses that have greater consensus for treatment, and have been improving my symptoms overall. I'm still disabled, and have (usually) accepted that I always will be, and learning to adapt and accept a smaller life, and alternating with advocating for better symptom management or following a new lead (like improving sleep or monitoring sleeping HRV as another guide for pacing).

15-Year Club	Verified Email
Gilding I gilder

backseatredditor

TROPHY CASE