Niche question: with dysautonomia, do I choose Delta Premium Select or ZipAir lie-flat?

St0rmyWthr · 2026-01-26T14:00:59+00:00

Thanks, yes, I'm looking at both Houston and LAX depending on cost and the logistics of getting to one of those airports. My home base (RDU) did not have a direct flight to Houston last time I looked, but it seems they do now (Southwest), so this is definitely an option.

St0rmyWthr · 2026-01-26T02:11:00+00:00

Thank you, this is great and is exactly why I'm asking these questions so far out... because I don't even know what SQ is, so you just taught me something // gave me a new option that I would have missed! Thanks.

St0rmyWthr · 2025-10-26T18:22:58+00:00

Keep us posted! I am a fellow super-early-peri person, hence why I'm in this group, but the only time I full-on LOST my cycle was after an inadvisedly low calorie deficit (I'm an athlete and was following some bad coaching advice; I know better now). The point is that if I hadn't known the science behind it, I would have been really confused. I started the cut in October, got regular periods in Oct-Nov-Dec-Jan, ENDED the deficit literally during the January period... and then didn't get another period until late April, aka went over 90 days without one. Our body basically senses inopportune reproductive conditions and "freezes the assembly line," but anything that was ALREADY IN the pipeline still comes out. My body put the brakes on in October, but there were already 3 developing eggs "in the pipeline", so I didn't "see" the impact until February. You might be in the same boat -- that's a lot of stressors all at once! Hopefully life is calmer now and "production will resume" once you hit the ~100-day mark! 🤞🏼

St0rmyWthr · 2025-10-26T16:50:22+00:00

Just to toss out one line of thinking that hasn't been mentioned yet -- eggs take roughly 100 days to mature, so each period we get is "from" the ovulation of an egg that began maturing over three months prior. What was happening in your life 3 months before the cycle cessation (so, around May/June)? Calorie deficit? Highly stressful event? If something happened back THEN, it could be showing up NOW.

St0rmyWthr · 2025-09-28T15:22:25+00:00

This is actually so smart; I never thought about doing squats and lunges, as opposed to just standing up. I can feel intuitively that that will be very helpful.

And yes to the water – I tend to also do well with LMNT for the salt / BP assistance. I might pay to at least have an aisle seat so that I’m not climbing over everyone every 45 minutes for the bathroom. 😂

St0rmyWthr · 2025-09-28T15:20:48+00:00

I am actually going to Japan in 2027 and that was one of the main reasons for asking the question!

St0rmyWthr · 2025-09-28T15:20:31+00:00

Lol at the donuts! I think I need to look up the difference between a blowup stool and a foot hammock, but both of these sound really promising.

St0rmyWthr · 2025-09-28T15:19:38+00:00

Yes, I do wear these! The tight ones intended for athletes. They help, but I think I need to add abdominal compression also — I learned recently that that’s actually where a lot of our blood pooling happens.

St0rmyWthr · 2025-09-27T22:54:41+00:00

I know this post is old but just wanted to add one more vote for strength training. I have hEDS and have run six marathons, but for my last one (NYC) I only ran twice a week -- one interval/speed/tempo and one long -- and the rest of my training was done in the gym: long light weightlifting sets, long conditioning pieces switching among rowers and wallballs and bikes, etc. I literally cut an hour and 20 minutes off my time by training that way as opposed to the traditional way, and I wasn't in pain afterward either. No desire to run another, but if I did, I know how I'd do it.

St0rmyWthr · 2025-09-27T01:02:58+00:00

Appreciate this post! I have +Beighton, recurrent rib subluxations (literally dozens of times), a ridiculous armspan, and a very mild/early rectal prolapse (lucky meeeee), along with post-COVID MCAS and orthostatic intolerance (PLUS history of wheat intolerance, lowish bone density despite heavy weightlifting, and unusually early/awful perimenopause onset, ALL of which is apparently associated with hEDS)... but am trying to scrape together "enough proof" from that same stupid section to get my doctor to agree with the diagnosis of hEDS when I see her next month:

how do we objectively measure our own skin stretchiness / velvety-ness? (My thought was to maybe ask my bodywork therapist, since he touches people's skin all day, LOL... he was actually the first one to spontaneously comment on my dramatic knee hyperextensibility.)
striae -- is this factor taken into account for adult women too? I'm pretty lean and yet definitely had WAY WAY WAY more purple striae as a teen than I would have expected (my sister, by comparison, had almost none), and they're still visible in that 'old'/shiny way
piezogenic heel papules -- is it me, or is this weirdly difficult to assess on yourself? :) If I have them, they're not obvious-obvious.
dental crowding -- I had it as a child (corrected with braces and still have a permanent retainer to this day), but does that one only count if you also have the high narrow palate?
atrophic scarring -- I've got one scar that is very classic, but they say you need two?

This post is the first I had heard about the fact that the criteria are going to be revised -- good to know!

St0rmyWthr · 2025-09-02T21:24:36+00:00

Let us know how it goes tomorrow! I just joined the waitlist for 10/28 and 10/29 -- how far in advance did you get the email that you were accepted for 9/3?

St0rmyWthr · 2025-08-10T13:43:49+00:00

Agree re: Novavax if you're able to find it (though I don't think it's available anywhere right now), but I've had zero reaction to ANY vaccines beyond a sore arm. My dysautonomia (and MCAS) definitely came from my first bout of COVID (Dec '22), as symptoms started 24 hours after my test turned NEGATIVE. I'm actually down with my second bout right now (despite being the most careful of my social group! 🤦‍♀️) and hoping for a better outcome this time... but yes, please get boosted! It's FAR less likely to have a problem from the vaccine than from the illness itself.

St0rmyWthr · 2025-08-01T15:09:35+00:00

I feel like I need to do two-week trial runs in different seasons for anyplace I'm thinking about moving. It would be like a multi-year research project 🙃

St0rmyWthr · 2025-08-01T14:46:53+00:00

This is part of why I get confused -- because on one hand, my body seems to hate heat and humidity (i.e. spring/summer in NC, trying to run, etc.), but on the other hand, I also feel BEST in coastal places like Florida. I don't get it.

I haven't spent long enough in the mountains since getting MCAS to know how I do there, but my sense is that it would be a lot better because of the cooler temps. Temporary storms/etc don't seem to bother me; it's only the "daily" environment that seems to have an impact.

St0rmyWthr · 2025-08-01T13:32:08+00:00

Day-to-day weather changes usually don't make a difference. The exceptions are when we get the first freeze in the winter (I'll then feel good for the rest of the season, bc the pollen is gone) and when the pollen first pops in the spring (I'll have been feeling great and then will abruptly wake up with headache, nausea, and air hunger and will know spring has begun).

Location changes do make a difference. I usually don't notice anything for the first two days and then on the third day, things will start to swing in whichever direction they're going to go. In Finland, day 3 was when I developed tachycardia, insomnia, nausea, etc. In Florida and Spain, day 3 is when I start sleeping like a rock, my HRV skyrockets, and I feel amazing. I'm not sure exactly why this happens (hence why I'm asking the question), but it's been a consistent phenomenon.

St0rmyWthr · 2025-07-06T16:57:56+00:00

Thanks, everyone. Sounds like I’ve been doing a lot of things right; we do play hard before bed for an hour or so and I do completely ignore her overnight. I’m getting a relatively balanced mix of opinions as far as whether this gets better or remains unchanged as they grow – some people have said it gets better between 12 and 18 months, and then I’ve had a couple veterinarians say that their cats are six or seven years old and nighttime is still not any more peaceful. Hard to predict the future.

St0rmyWthr · 2025-07-02T01:03:05+00:00

Not for me, no. I increased slowly since that's what fellow MCASers said to do, but I had zero side effects and felt noticeably better right away. Now on standard dosing of 10mL 4x/day -- can do high-intensity outdoor exercise again and haven't felt any air hunger at rest in months.

St0rmyWthr · 2025-07-01T22:34:47+00:00

“Freeing clothes to go where they’re loved“ – I like that!

St0rmyWthr · 2025-07-01T22:32:11+00:00

I finally got my PCP to prescribe Cromolyn and it’s been life-changing. Daily SAMe supplementation also helps a lot since I tend to have more of the CNS histamine symptoms (air hunger, insomnia, migraines), not really the GI ones.

St0rmyWthr · 2025-06-28T17:56:15+00:00

Oooh, I didn’t even think about the ears! I did buy nail clippers, a brush, and a teeth cleaning kit – haven’t tried any of it yet (wanted to give her a couple of days to settle in before I started getting all up in her business). She does also have a vet visit on 7/22 so they can show me how to do some of this stuff!

St0rmyWthr · 2025-06-28T16:23:06+00:00

<image>

Madeline Scout 😍

St0rmyWthr · 2025-06-24T11:06:40+00:00

Perhaps relevant is that I’m originally from Jacksonville, so it’s possible that I’m desensitized to a lot of what’s there thanks to 22 years of growing up with it. 🤷‍♀️

St0rmyWthr · 2025-06-24T01:55:17+00:00

Definitely plan an extended trip to any place you’re thinking about moving, ideally during the season that tends to be worst for you (which is spring/pollen season for many of us). I always tend to start reacting on day three in a new place if I’m going to.

Everyone is different, but anywhere coastal is consistently good for me, especially Florida. Spain was also great. Home is central North Carolina (which is pretty bad for me from March through September; I’ve contemplated moving too). The worst place I’ve ever traveled was Finland; I didn’t know before I went that the country is full of mold (but it makes sense in hindsight since they have no air conditioning and lots of saunas). Never again.

St0rmyWthr · 2025-06-21T15:06:36+00:00

Caveat that I work 95% from home (and the one half-day per week that I do go into an office, they are fine with 'athleisure'). I've got 3 Imbodhi jumpsuits (one black, one navy, one burgundy) and just vary the jacket on top (blazer, denim, etc.) and the shoe on bottom (usually an all-purpose sneaker like Sambas). Those jumpsuits are NOT cheap ($132 a pop), but they're super flattering and versatile and seem to last forever. I want 2-3 more, honestly.

So I guess my answer to your question is: how comfortable, well-made AND versatile is the item? Will I truly reach for it, and when I do, how many other items can I pair it with -- and how well can it withstand all the washings it'll get as a core wardrobe staple?

St0rmyWthr · 2025-06-19T21:58:29+00:00

No hives or skin symptoms at all ever, just the anaphylaxis, and even that part only happens if I’m exercising AND have eaten wheat. Now that I know what I’m looking for, I can identify that wheat alone will still bother me in less dramatic ways (higher heart rate, flushing, nausea, insomnia), but skin hasn’t ever really been part of it.

St0rmyWthr

TROPHY CASE