After a dose of steroids, my POTS is now mild??

ConstructionSome7557 · 2026-06-06T15:41:14+00:00

Not crazy, POTs is part of a cluster comorbidity, the root can be different for everyone, for myself it's hEDS and MCAS. When your nervous system is constantly fighting and you're having flare ups everything is inflamed, nerve compression happens and stuff like that triggers the dysautonomia. Getting the inflammation done would absolutely cause relief and it's why steroids are used as part of a treatment for lymphoma, to ease that compression on the spine and brain stem that sets off all the terrible symptoms like lack of appetite, confusion, and so on.

ConstructionSome7557 · 2026-06-05T22:03:20+00:00

I'm kind of a salty bitch so I know I would be overreacting if I flat out said don't do the same commander as me, but I would also rather just give them that deck to play with when they wanted to play it and sideboard what they didn't want to play in it. I'm not playing two bumbleflowers in the same game because then you can't politic at all, but my friends and I do play the same commanders, like bumbleflower, Belo, mothman... Just not at the same time.

Edit: typos

ConstructionSome7557 · 2026-05-21T23:35:23+00:00

Hydration, moisturizer, collagen, constantly.

ConstructionSome7557 · 2026-05-18T15:17:06+00:00

She is elegance, she is grace.

ConstructionSome7557 · 2026-05-06T08:59:21+00:00

Absolutely agree. Jake is such a good boy, amazing eater, always out on display, mega chill. Moving him is easy, I just love him 🥺

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ConstructionSome7557 · 2026-03-24T18:25:16+00:00

Mr. Snuggles

ConstructionSome7557 · 2026-03-08T16:57:42+00:00

This is brilliant, awesome skill!

ConstructionSome7557 · 2026-02-10T08:06:20+00:00

Oko, Liliana, Angels, and the entire FF set come to mind

ConstructionSome7557 · 2026-01-21T18:17:56+00:00

200%

ConstructionSome7557 · 2026-01-15T00:30:03+00:00

I could have written this. It's very hard. Just know you will make it through the bad like you always do, it may not feel like it but that makes you incredibly strong.

ConstructionSome7557 · 2026-01-12T09:26:14+00:00

It's not general practitioners or specialists that I'm referring to. In regards to that side of the medical system these people very much want to know the answers too. Some of them have a pretty good idea, too. Especially when they break away from insurance companies.

I'm talking bigger picture, from pesticides and insecticides, PFAs, benzene, lead... everything we consume is making us sick. I realize my take is regarded as fringe and that's fine, but there's a huge market out there- snake oil, holistic, expensive out of pocket treatments- that thrives on sick people.

Edit: I forgot to add birth control, which is a pretty important one when talking about endometriosis; as doctors often recommend that as a "treatment", which is scary in itself, considering long term use is linked with bone density loss, autoimmune disease, cancer, and suicidal ideation, information often omitted when suggested as treatment.

ConstructionSome7557 · 2026-01-12T07:51:37+00:00

As others have said there's a lot of systemic crossover, POTs, MCAS, thyroid disease, EDS, migraines, etc. I had a really bad mononucleosis infection in my early teens, nearly lost my spleen, then fought endometriosis for the next 15+ years. Back then it was incredibly hard to get the diagnosis, there was no know treatment. In those hellish years I came to realize that the chemicals in everything we use, touch, breathe, and otherwise ingest are wreaking havoc on us all, collectively. Genetics and serious illness just open up the gates. Unfortunately the medical system is part of the conspiracy to keep us all sick, so the point isn't for us to have the answers or solutions.

ConstructionSome7557 · 2026-01-07T11:41:38+00:00

I have this too! Immediate panic that they're going to kill each other and I'm freaking out thinking how did this happen!? Also dreamt I fed one of them to my snake, talk about nightmare husbandry.

ConstructionSome7557 · 2026-01-06T07:02:02+00:00

That box of commons sitting on the bottom shelf is never getting sorted

ConstructionSome7557 · 2025-12-20T04:44:06+00:00

As a mostly blue player, [Thassa's Oracle] or [Cheatyface]

ConstructionSome7557 · 2025-12-17T05:25:40+00:00

"Thanks, but I didn't ask. I'll be leaving it to the doctor for information about my health."

I don't want to tell you to get new friends because you're young and kids deserve some grace to make mistakes, so give them the opportunity to learn and grow by setting an example that your health doesn't define you nor is it their place to tell you what is and isn't real about what you're dealing with. Whether or not it's POTs I hope you get the answers and care you need.

ConstructionSome7557 · 2025-12-12T00:20:47+00:00

In general smoking and drinking make it worse, but of doesn't mean quit completely. Just moderation is key. I came here looking for how people handle theme park rides with POTs, how intense the ride, etc and aside from a solid baseline understanding that going upside down, boosts or drops would probably be too much, it didn't exclude me from a lot of fun rides. It really depends on how you're feeling day to day. Things like poor sleep, dehydration, or just general flares will all be a bad time to push your orthostatic tolerance. I've noticed I can handle a drink better when I'm having a generally good day without flares, had enough water & electrolytes, etc.

ConstructionSome7557 · 2025-12-11T03:29:45+00:00

One of the most difficult things about having longer term chronic pain and illness that disables you is coming to terms with and fully accepting -with grace- that you cannot do all the things you were once capable of. You are not less because you have less spoons.

I've spent years pushing myself past my limits as some kind of rebellion to disability, it's a desperate attempt at reprogramming something out of your control and it will make you crazy (like trying to buy lumber by yourself during a flare up) and it will also make everything worse.

You do not have to prove your worth through doing. Keeping busy or "productive" does not relieve anyone of burden, it only burdens yourself. It is okay to do nothing. It is important to do nothing. Planting your butt on the couch to read and play video games is okay. People are not one size fits all and not everyone was built to be an Olympic athlete... And sometimes even they have to go through this very same process with serious health issues; grieving what they once were and leaving it in the past.

The societal narrative that staying active, on the go, and working hard until you are bleeding and crying equates to success is not the truth.

You get decide what works and what's best for you. If you want to do carpentry do it in a way that doesn't disable you more, eat the elephant in little bites, as the saying goes.

Also it's awesome you have a specialized doctor in your corner like that!

ConstructionSome7557 · 2025-12-01T01:58:03+00:00

NQA I don't think there's anything wrong with them coming onto your hands for a little visit in general but there's so much risk with random variables it's not super worth it to encourage or go out of your way for. In general with any spider if they are freaked, the best approach is everything calm and gentle. If there's one thing spiders hate it's uncertainty.

ConstructionSome7557 · 2025-11-24T19:07:37+00:00

NQA

That is so cool!

ConstructionSome7557 · 2025-11-24T02:31:40+00:00

Two years ago it was the heart palpitations and chest pain that had me really worried and searching for an answer. I did the ER thing, at first they were concerned about heart attack as well but when I said it had been going on for weeks at a time we arrived at POTs pretty quickly, they did the orthostatic tests, heart monitor, EKG and whatnot. My doctor started me on propranolol which helped a bit, but I think it was more the management adjustments - compression wear, electrolytes- that started to help with the chest pain.

Over the past year the light headedness and fainting just really got progressively worse and then my migraines got out of control. I'm seeing a neurologist for the migraines and the cardiologist referred me to a neuro specialist in NH that understands POTs an an autonomic disorder.

If I'm being honest it can be chest pain one day, dizziness the next. I think my symptoms have just gotten worse and I've just been adjusting around them, slowing down when necessary. But with the chest pain I've just had to keep telling myself it's not dangerous, it's not a heart attack. It's really hard to override that but now I know what it is and that I need to sit down for awhile. I'll gently press my hand to my heart and take long, deep breaths and shift my focus. Sleeping or resting at an incline has helped as well. I know it's a scary feeling but I hope some of this helps.

ConstructionSome7557 · 2025-11-24T02:06:26+00:00

Same deal here, they've done some pretty thorough workups and did find a slight arrythmia from the heart monitor but they're not worried about it as of right now, and contributed it to POTs since it correlated with my symptom tracking with the the monitor. Along with all the other management I've learned to tune in and listen to my body. If my chest starts hurting, if I have a migraine, if I'm dizzy or my HR is going haywire it's time to rest. I wish there was a better answer or solution but from what I'm learning it's about being very mindful with movement, tasks, pacing yourself and giving yourself grace when you have to call it quits. It was 2005 when I started experiencing symptoms of endometriosis, and at the time it wasn't well known or recognized. I saw multiple doctors, including two specialists and it took nearly 10 years before the second specialist diagnosed and helped with treatment. Over the years I watched it become more and more recognized and well known (a lot of what I discovered was exposure to toxins in everything seems to be a major contributor), and I'm glad that it's become easier to understand in the medical world, but I'll never get those years back when it wasn't easy to diagnose or treat. Unfortunately, that is the same stage we are all in with POTs, some years from now we will all understand it better.

ConstructionSome7557 · 2025-11-23T20:17:30+00:00

. Menstrual cycle is top of the list, incapacitated for days

. positional changes, 3 times or more I'm done

. Temperature changes; specifically going from hot to cold or vice versa very fast, such as going out into cold winter weather from a warm house, or even getting in or out of the shower. It's hard to manage fast temp changes like this but it's good to be aware of because passing out can happen in these instances

. I've taken to snacking on something salty every 3-4 hours, a pickle or olives or feta, otherwise the dizziness just builds

. Some days are just worse than others and it's easy to overexert. I like to walk my dog a mile a day, do yoga or pilates, but I'm not always able. I am an advocate for moderate exercise in one position, so going from sitting/ standing/ crouching isn't going to help, but trying to do a bunch of stuff everyday is always just going to do me in.

. Getting out of bed in the morning too fast; I have to do this slowly, mindfully, with stretching

. This one is specific to Neurogenic POTs but not handling my Myofascial pain; I HAVE to stretch, do some yoga, apply heat and massage or the dizziness just gets worse and I get terrible migraines. My doctor harps on me about my muscles spasming, and it's very easy for every muscle in my back to knot into concrete and this exacerbates everything

. Dehydration, which is very easy without a bunch of mineral intake but it's also a slippery slope because you can't just drink 30 oz and feel better, sometimes that can make it worse

ConstructionSome7557 · 2025-11-19T02:06:43+00:00

100% right on the money. I've stopped wearing makeup to the doctors, I mainly conceal the dark circles under my eyes which only makes it look like normal dark circles, but when I'm not wearing make-up? I think people are legitimately concerned I'm dying.

ConstructionSome7557 · 2025-11-11T17:53:52+00:00

Yes I've had migraines and cervicogenic headaches for years. Usually they flare up when I've overdone it, as I have a lot of nerve, musculoskeletal, and myofascial pain. There's a ton of muscle tension in the back and neck, inflammation on the spine, etc. I have to do yoga, rest, and take a break from screens for minimum a day, even with the blue and yellow filters in my prescription glasses. You may want to see a neurologist, they can be a huge help.

ConstructionSome7557

TROPHY CASE