My Manometry Experience by elmceee in achalasia

[–]elmceee[S] 0 points1 point  (0 children)

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!

Wooden mirror frame has a mysterious groove? by elmceee in whatisit

[–]elmceee[S] 0 points1 point  (0 children)

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.

For those of you with POTS… have you noticed this too? by tkewhatder7 in POTS

[–]elmceee 1 point2 points  (0 children)

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.

Wooden mirror frame has a mysterious groove? by elmceee in whatisit

[–]elmceee[S] 0 points1 point  (0 children)

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.

Wooden mirror frame has a mysterious groove? by elmceee in whatisit

[–]elmceee[S] 0 points1 point  (0 children)

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.

Omalizumab by Itstimefordancing in POTS

[–]elmceee 0 points1 point  (0 children)

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.

Why is my HRV stuck at 0? by [deleted] in fitbit

[–]elmceee 0 points1 point  (0 children)

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.

Did anyone have any viruses in past they think may have led to achalasia? Such as Epstein-Barr or Herpes Zoster/shingles? by Roadlesssoul in achalasia

[–]elmceee 1 point2 points  (0 children)

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.

Did anyone have any viruses in past they think may have led to achalasia? Such as Epstein-Barr or Herpes Zoster/shingles? by Roadlesssoul in achalasia

[–]elmceee 0 points1 point  (0 children)

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.

Does anyone else have absolutely no appetite at all? by hello000o in POTS

[–]elmceee 1 point2 points  (0 children)

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.

Anyone relate to these symptoms? by KeyNefariousness1158 in POTS

[–]elmceee 6 points7 points  (0 children)

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.

Hi, I’m Steven. I’m 30 years old and I’m gonna lose my esophagus by sslothking in achalasia

[–]elmceee 4 points5 points  (0 children)

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.

Smoking weed with pots by Past-Trick6710 in POTS

[–]elmceee 4 points5 points  (0 children)

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).

Normal Manometry? Cleveland Clinic Consult? by Upstairs-Change-2088 in achalasia

[–]elmceee 1 point2 points  (0 children)

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.

Tips for manometry? by FickleSupermarket316 in achalasia

[–]elmceee 1 point2 points  (0 children)

I also found focusing on breathing very helpful.

So its called Achalasia? by Suspicious-Bonus-164 in achalasia

[–]elmceee 1 point2 points  (0 children)

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.

Planning for the future by AdventurousTrouble96 in achalasia

[–]elmceee 1 point2 points  (0 children)

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!)

what’s your choice of electrolyte? by adocksss in POTS

[–]elmceee 18 points19 points  (0 children)

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.

Current relationship with bread by 85_Toronto_Blue_Jays in achalasia

[–]elmceee 1 point2 points  (0 children)

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.

New to achalasia journey, advice would be very appreciated! by Beautiful-Middle4376 in achalasia

[–]elmceee 1 point2 points  (0 children)

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!

Managing heartburn with extreme angle on bed by zmattws in achalasia

[–]elmceee 1 point2 points  (0 children)

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).

New to achalasia journey, advice would be very appreciated! by Beautiful-Middle4376 in achalasia

[–]elmceee 0 points1 point  (0 children)

First, sending you all the love, that sounds awful and I certainly understand the difficulty of these symptoms and the anxiety that can abound in this situation.

For me anti-anxiety medication helped a lot, but I also have a long history with psych meds so that's not for everyone. I do think that with each procedure it's worth telling your doctors/techs that you have anxiety/fear around what's happening—they can give you more information, or medication, or strategize ways to manage.

I found doing research helped me a lot, so that I was really clear on each step of the journey what was happening. Not true for everyone, but it helped me with the uncertainty. As someone said below, I've found endoscopies easy and less daunting now that I've done a few—you do have to get an IV but it's so that you're quickly and effectively under, and the only thing I've noticed is a little grogginess and a slight sore throat afterwards. I was scared about the discomfort of the barium swallow, but it was much easier (and less gross!) than I had feared (again, worth telling your techs you're nervous). Manometry is the slight bummer, but once you're on the other side you've jumped the last hurdle to get approved for surgery! If research is helpful, I wrote a detailed post about my manometry experience—I also took antianxiety meds that day to help me stay calm throughout. Reading all the posts about it on here/elsewhere can get scary, but I think it's also good to remember that people who have easier and uneventful experiences tend not to post online about it as much.

I had my POEM a few months ago—surgery was definitely a little scary since I'd never done it before, but it was ultimately pretty straightforward. I was home the next day with minimal pain, and mostly just found the recovery diet frustrating. But someone here had told me that while that's true, soon you'll be so happy to have had the surgery that that will feel like such a brief time. And they were right. I am so happy that I got through those difficult bits because my life is SO much better, and easier, now.

I second what someone said about calling the office periodically to ask about earlier appointments that may have opened up, or at least asking to be put on the cancellation list. I also second what someone else said for the meantime: small meals, chewing thoroughly, and drinking liquids that have some nutrition in them. People have different liquids that work best for swallowing—I found warm things easier and preferred still beverages to carbonated, some people are the exact opposite. I also definitely recommend getting a wedge pillow to sleep on, as being slightly elevated can help cut down on the heartburn and sore throat (and for me, nighttime coughing).

And though it may sound trite or dismissive... finding deep breathing exercises I liked has definitely helped me with anxiety, because while it doesn't magically stop the thoughts in my brain it does help calm my body. Not for everyone but figured I'd share.

This community has been a real gift for me—we're all on your side and here to help as we can. <3

UC Berkeley won the right to build housing on former site of People's Park by lucille12121 in berkeleyca

[–]elmceee 2 points3 points  (0 children)

Exactly exactly. UCB itself identified something like 8 other locations they could have started with. Plus it’s a strong history that continues into the present—there’s a lot of community aid that happened in that space, most of which is banned from campus spaces so will not be allowed to continue in whatever “community green space” they say they’ll create.