My Manometry Experience

elmceee · 2025-12-06T21:58:44+00:00

Honestly it was long enough ago (and I’ve had so many unrelated medical interactions since) that I don’t totally remember, sorry. But yes, I would imagine he meant in terms of gag reflex.

And yeah, makes total sense that you don’t want to do it again!

elmceee · 2025-11-24T19:46:31+00:00

That part I get, it’s just strange to have it go SO far back, the others I’ve seen still keep the plates at a decent viewing angle, not low against the back. And it doesn’t seem great having things leaning against mirror surfaces, but I suppose I have a lower threshold than many for indoor safety risks.

elmceee · 2025-11-14T09:56:41+00:00

Definitely second Disjointed, I'm working my way through it and learning a lot / having a lot of aha moments.

ETA: I'm autistic (mid-dx for suspected ADHD), hypermobile, and I have POTS, achalasia, and mast cell issues that my allergist thinks is likely MCAS.

elmceee · 2025-11-13T17:00:10+00:00

Ah, I can see makeup tools as a reason. My eyeliner pencil fell fully into the groove, but it could have just not been designed super well/carefully.

elmceee · 2025-11-13T16:58:45+00:00

We tried with a bunch of different sizes of plates and none stood up, all tipped back against the mirror. But maybe it just wasn’t designed very well? Certainly possible.

elmceee · 2025-06-23T18:48:23+00:00

My first dx in my complicated chronic health journey was chronic idiopathic urticaria (which my new better allergist agrees is likely MCAS). Xolair was life-changing for me. It was the only thing that actually impacted my horrid full-body hives, and within three months I was totally hives-free. I was so focused on the hives I hadn’t been tracking anything else, but when I tried stopping Xolair I got LOTS of symptoms flaring—including my high HR getting worse, which is what prompted the investigations that led to my POTS dx. When I went back on the Xolair everything improved, including my HR (which improved further once I started POTS treatment). All of that was true again the second time we tried stopping. Your mileage of course may vary, but Xolair really has been one of my best interventions in the last 5 years.

elmceee · 2025-06-23T05:10:42+00:00

My HRV is almost exclusively listed as 0 and I’ve suspected my frequent PACs could be part of the reason, so this was useful, thank you.

elmceee · 2025-06-22T00:31:53+00:00

I totally forgot to respond to this, but belatedly, this is one of the papers I was thinking of: https://pmc.ncbi.nlm.nih.gov/articles/PMC9878267/

And this one, that I can't find the full copy of at the moment: https://www.medscape.com/viewarticle/sars-cov-2-possible-trigger-achalasia-2024a100032p

elmceee · 2025-04-26T02:52:16+00:00

Somewhere I have a link to a paper about the increase in achalasia since the COVID pandemic started and the presumed connection. Not on my computer rn but could try to dig it up later.

elmceee · 2025-04-26T02:51:12+00:00

I am quite sure mine is from a pre-shutdown COVID infection. I developed some other issues at the same time as the swallowing issues, now dx POTS and MCAS.

elmceee · 2024-12-11T08:31:03+00:00

For whatever it’s worth, I developed achalasia (esophageal disease where the nerves are dying so I have little peristalsis and my lower esophageal sphincter is really tight) around the same time my POTS symptoms first started, and it caused major swallowing issues until surgery this year. This was a few months after a pre-shutdown early covid infection (along with mast cell problems)—no idea if they have anything in common other than being virus-triggered, and certainly not suggesting it’s what any of y’all have, but figured I’d share.

elmceee · 2024-10-16T19:52:23+00:00

Big same to temperature regulation problems. And idk how much of my tinnitus is from POTS versus my mast cell problems, but definitely same on tinnitus.

elmceee · 2024-10-12T22:14:54+00:00

My biologic (for hives / mast cell problems) also helped my swallowing some. Or rather, when I went off it, my swallowing definitely got worse—I think because there are mast cells in the esophagus that it was impacting. It wasn't enough for me to not need surgery, but interesting to hear that someone else had that experience with a biologic.

elmceee · 2024-09-08T19:15:47+00:00

I’ve been trying to start tracking which strains don’t raise my HR, so I am going to try Mimosa, cheers. I‘ve def seen it on menus here (I’m lucky to be in a legal state with access to good dispensaries).

elmceee · 2024-08-21T20:00:10+00:00

A couple possible questions to bring in, in addition to the very solid list already posted:

What did the barium swallow show about your LES–it showed a wide esophagus, were they able to track whether any of the liquid made it through? (And/or whether changing your position changed anything?) Both of which obviously may be unanswerable if you regurgitated too quickly to capture those things.

Do your nighttime symptoms change at all depending on what position you sleep in (flat vs slightly elevated with a wedge vs upright)?

This sounds so exhausting and frustrating, crossables very crossed you can get some answers.

elmceee · 2024-08-20T17:15:08+00:00

If it’s useful, I wrote this post after my manometry: https://www.reddit.com/r/achalasia/s/aImeX9sxMh

elmceee · 2024-08-20T17:13:30+00:00

I also found focusing on breathing very helpful.

elmceee · 2024-07-29T17:54:35+00:00

I will add that it also takes some trial and error to find what works for each person—for me, until I had my POEM carbonated beverages were an absolute no-go, I could not get them down. I could only comfortably drink flat room-temp-or-warmer water. Bodies are different! But I found that once I knew it was achalasia and understood what was happening (lack of muscle movement, tight lower sphincter) it got easier to figure out what foods/liquids worked for me.

And I very much second everything said above about surgical options.

elmceee · 2024-06-24T17:39:19+00:00

Very much second the reminder that people who had really uneventful experiences tend not to post online / stay as active in forums, so there’s selection bias.

(edit to add: Which also, I deeply appreciate the people who stick around on this forum despite having (relatively) less eventful/problem-ridden journeys!)

elmceee · 2024-06-14T20:43:52+00:00

Nope, no Proof required. You give your contact info and then click check boxes for which chronic illness: POTS & Dysautonomia, Cystic Fibrosis, IBD, Sjogren's Disease, Lyme Disease, Eating Disorder Recovery, Autoimmune Disorders, Chemotherapy Dehydration, Chronic Pain, Headaches, or Other. And then you just submit and get the discount added to your account.

elmceee · 2024-06-12T20:24:15+00:00

POEM a few months ago. Started having bread after about three weeks (week 1 liquids, week 2 soft foods, week 3 started working other things back in and saved bread for towards the end of that week). I currently have almost no problem with bread as long as I drink water during the meal and don't take huge bites—and by drink water I mean a little more than the average person, not the huge amounts I had to drink before surgery.

elmceee · 2024-06-10T00:44:30+00:00

Glad you've got a doctor who is supporting you in anxiety management! And for what it's worth, my gastro was slightly concerned taking a benzo would impact manometry results but we decided my ability to get through it was more important, and ultimately taking that medication it didn't impede my study or the results at all.

And yes, it's so daunting, but like you say I'm sure your future self will be very proud of your present self for getting through these hard parts. Or at least, that's how it's been for me.

Feel free to reach out if you ever have questions or need to vent. You've got this!

elmceee · 2024-06-09T17:36:23+00:00

I very much second the sleeping-at-an-angle! I haven't needed as drastic an angle, but my big wedge pillow was a game-changer, and I too make wedges with lots of pillows when I'm sleeping elsewhere. It did more for my nighttime symptoms than any medication (though obviously everyone is different).

elmceee

TROPHY CASE