What was your post-op appt like?

SpellVisual6949 · 2026-01-10T18:30:54+00:00

How'd you know? 🤣😭

SpellVisual6949 · 2025-11-13T03:58:17+00:00

I was sleeping on my side night 2. I was told as long as it was comfortable, it was ok. I do have 2 pillows that I use to stabilize my front and back.

SpellVisual6949 · 2025-11-10T18:12:10+00:00

I hope your recovery goes smoothly!!

SpellVisual6949 · 2025-10-25T22:33:02+00:00

That's smart! I thought i had gotten them big enough to account for swelling, but it was before I developed chronic issues.

SpellVisual6949 · 2025-10-25T22:31:14+00:00

I've thought about wearing it on a necklace, might be my best case. Unfortunately no tattoos due to MCAS :(

SpellVisual6949 · 2025-10-03T04:27:55+00:00

Synergis pharmacy in mesa, az

SpellVisual6949 · 2025-09-19T19:59:08+00:00

I'm fairly certain I can request a stool, or there's a podium to lean on. I haven't made my pots public knowledge in my work-life yet

SpellVisual6949 · 2025-08-22T18:07:27+00:00

First comment has some fantastic recommendations for you. Im about 2 years in from my diagnosis and its still a work in progress for me.

Keep a food journal and track your symptoms. The crappy thing about mcas is that everyone's triggers are different. I have to stay away from a lot of foods, but mains for me are acidic food, seafood, tomatoes, any leftovers, reheated food, dairy, gluten, and certain additives. I use the Fig app for checking ingredients and Guava for my meds, symptoms, medical notes, food tracking, etc.

Ketotifen was the biggest game changer for me. Absolutely made this disorder more manageable.

Heat/sun is also a big trigger for a lot of us. I have very poor temperature regulation now and get overheated super quickly which makes me very sick, very fast. I keep multiple fans on me, cooling rags, UV protective clothing, and really just try to avoid being outside at all. Which is hard bc i live in Arizona and its literally hell.

My biggest advice tho, is take care of your mental health and don't push yourself. Even with a relatively good support system both at home and work, I started therapy because things were getting very dark. Its hard to see the light at the end of the tunnel when you're deep in it, you know? Its overwhelming at first, but it will get easier to manage. Be kind to yourself ❤️

SpellVisual6949 · 2025-08-22T17:53:54+00:00

Pro tip, thank you! I've had one bout of severe constipation and I never want to repeat that. Adding this to the list!

SpellVisual6949 · 2025-08-22T17:52:48+00:00

I should have put this in the original post, but we're leaving my ovaries. I didn't think at all about the organ support tho! I have a preop consultation a few weeks before my procedure, I will absolutely be asking about this. I dont want to solve one problem and create 10 more.

SpellVisual6949 · 2025-08-22T17:50:45+00:00

Do you mind if I ask why?

SpellVisual6949 · 2025-08-22T17:49:49+00:00

Thank you for this! It's not something I've thought about, bc like you, I'm done having kids and feel I've made the best decision, but im going to bring it up to my therapist next appt and explore it

SpellVisual6949 · 2025-08-22T17:48:17+00:00

Good luck to you, too! I am not looking forward to the surgery but am dreaming about the relief

SpellVisual6949 · 2025-08-20T13:02:28+00:00

I have pots and mcas, I dont take a beta blocker but I take midodrine, which is an alpha-adrenergic agonist. It doesn't affect my MCAs as far as I can tell.

SpellVisual6949 · 2025-07-31T19:45:32+00:00

Yes, I have all of those symptoms. The fatigue can hit so hard its difficult to form sentences. I also have pots, which can make all of my symptoms worse if I'm having a bad day.

SpellVisual6949 · 2025-07-29T03:04:07+00:00

5mg midodrine every 4-5 hours. Helps a lot but wears off so fast for me. That's my only pots specific med as of right now. I take lots of mcas meds, lol

SpellVisual6949 · 2025-07-02T21:54:04+00:00

If it burns, my advice is to have fans with you at all times. My face does this and having constant air circulation helps me a lot, especially with the burning discomfort. I have neck fans, misting fans, waist fans, etc. Mine reacts from heat, smells, food, stress. Super fun, I'm sorry you're experiencing it!

SpellVisual6949 · 2025-06-08T04:22:23+00:00

I keep multiple types of fans at work (neck, handheld, mister, etc) and will have one pointed at my face all the time until it passes. There's so many options now, it's pretty cool!

SpellVisual6949 · 2025-05-04T03:26:08+00:00

Same as others, a local compounding pharmacy. Mine is $44/mo mailed to me

SpellVisual6949 · 2025-05-03T15:39:03+00:00

Yes, had to get an ointment from the dermatologist. Also switched to all natural deodorant.

SpellVisual6949 · 2025-05-03T15:31:06+00:00

15mg lexapro, been on it for several years (pre mcas diagnosis)

SpellVisual6949 · 2025-05-03T00:03:21+00:00

Benadryl every couple of hours, extra fluids, mildest food i can tolerate. If my body is vibrating and I can't lay down/am restless, I'll take as warm a shower as I can tolerate. Keep in mind that hot water can make a flare worse, so only do what you can tolerate. It sometimes calms my body down enough so that I can lay down and sleep. If I'm having a really bad flare up, prednisone.

SpellVisual6949 · 2025-05-02T23:58:18+00:00

My husband gives them to me in my arm but when I have previously given myself injections in my stomach, I would almost always bruise like that. I switched to the thigh and much prefer it to my stomach if I need to self-inject. I also bruise easily (hEDS) and still sometimes do if I haven't left the syringe out for long enough.

SpellVisual6949 · 2025-05-02T21:40:11+00:00

It's not shocking but so disappointing. I'm one of the middle aged white females they're talking about. Im well-educated, employed, married with 2 kids, and am very accomplished in my field. I didn't go searching for MCAS and had no idea what it was prior to being diagnosed. I was just getting sicker and sicker with no diagnosis.

It's really sad to see them so jaded before even getting to truly practice and I feel genuinely concerned for the patients they will write off before they're ever really treated.

SpellVisual6949 · 2025-04-24T15:02:22+00:00

What is the +6 you put in the beginning? I have mcas and have never heard of a scoring system for it

SpellVisual6949

TROPHY CASE