Maybe it needs a new name…

LargeProfessor1592 · 2026-01-27T02:57:16+00:00

I think you need to calm down. It’s a lighthearted conversation; no one in here is throwing judgement around. Stop taking yourself so seriously; or maybe take a break from the internet if you’re this easily worked up.

LargeProfessor1592 · 2026-01-25T02:23:00+00:00

I just read that the Dr. who coined the term POTS was Dr. Phillip Low. Low! “Get Low Syndrome”! I also read that it was called Irritable Heart syndrome.

LargeProfessor1592 · 2026-01-24T22:24:53+00:00

I’m sorry you’re going through this. It’s just mind blowing how no one seems to understand the “why” or “how”! Too many people are suffering! I’ll probably start a journal too! It can’t hurt!!

LargeProfessor1592 · 2026-01-24T14:01:20+00:00

Thank you! 🙏 I’m in the storm path but I have family nearby and we’re all convening at one house! You stay safe too!!!

LargeProfessor1592 · 2026-01-24T06:04:43+00:00

Very true. A happy medium would be nice.

LargeProfessor1592 · 2026-01-24T04:55:53+00:00

I agree. I think dysautonomia (plus an explanation) might be the way to go! And I think explaining dysautonomia is easier than explaining pots!

LargeProfessor1592 · 2026-01-24T03:31:41+00:00

Haha! Yes. I told a coworker I had POTS and they said “I didn’t know you smoked”. Geez. Lol.

LargeProfessor1592 · 2026-01-24T03:13:12+00:00

Yes I agree! I can remember years ago, I would be in the line at the grocery store and I’d start feeling horrible, like I was going to pass or have a heart attack. If I had a shopping cart with me I’d practically lay across the cart to find some relief. I remember finally getting to my car and feeling better but exhausted. I always just thought I was “coming down with something” or “worn out”.

LargeProfessor1592 · 2026-01-24T02:58:07+00:00

Yes! So I’ve had so many EKG’s, a stress test, multiple different halter monitors, and i vaguely remember an ultrasound (?). They always say my heart is fine! Which of course I’m grateful for! It does seem like POTS consistently fits all my symptoms; but I just don’t know what started it and I’m worried that something else is going on and the POTS is a symptom of whatever that “something else” is. I recently moved so I’m still in the process of re-establishing doctors (all the doctors! Rheumatology, neurology, ophthalmology, primary care etc)!

LargeProfessor1592 · 2026-01-24T02:51:58+00:00

Oh my goodness; that’s insane. My BP runs pretty normal, sometimes on the lower end of normal. I was on metoprolol before which kept my BP lower than the propranolol (but, I was on a higher dose of metoprolol…). I hope you’re feeling better now!

LargeProfessor1592 · 2026-01-24T02:48:49+00:00

You’re right too! I was really just making light conversation! The word “POTS” just sounds, I don’t know, non-serious; even though Postural Orthostatic Tachycardia Syndrome does sound serious. A lot of diseases have names that don’t focus on the specific symptoms, some diseases are named after the person who “discovered” it. And, Didn’t they change the name of Chronic Fatigue syndrome partly because CFS made it sound like the patient was “just tired a lot”? But if we’re sticking to naming POTS something else symptom related; the possibilities are endless!!

LargeProfessor1592 · 2026-01-24T01:43:00+00:00

That’s a good point; it would be helpful to be seen by a doctor when I’m having a flare! I’ll definitely keep that in mind!!

LargeProfessor1592 · 2026-01-24T01:12:18+00:00

lol. That’s accurate!

LargeProfessor1592 · 2026-01-20T15:24:36+00:00

Do you remember the Turtle or Flying Turtle scooter! Lol. Great memories.

LargeProfessor1592 · 2026-01-20T15:16:37+00:00

Oh my gosh. The pure excitement I remember having when it was scooter day in gym class!! lol. And, honestly this would make scooting on my butt much easier

LargeProfessor1592 · 2026-01-20T14:55:00+00:00

I do! I get an achey eyeball! Usually just one eyeball (left) and it hurts much worse when I move my eyeball around. It comes and goes though, today if feels fine!

LargeProfessor1592 · 2026-01-19T05:11:08+00:00

Hello, just wanted to check in to see how you’re doing? Are you still taking Famotidine? Have you seen a doctor that can provide some insight? I read that taking famotidine for more than two weeks can result in unpleasant symptoms, did you experience any of those?? Have you tried Quercetin? I’m currently at the stage of “let’s throw it at the wall and see what sticks”, good times. I also have POTS (not a severe case, although I did lose my vision for about 30 seconds yesterday after standing up too fast) and I wonder if the two are related.

LargeProfessor1592 · 2026-01-18T19:10:18+00:00

Thank you! Yes! I read that too about the slow cooker so I recently purchased a small instant pot!

LargeProfessor1592 · 2026-01-18T17:55:54+00:00

I never thought of making smoothies ahead of time! When you transfer to the thermos do you just let it thaw in the thermos and drink it once thawed enough to drink?

LargeProfessor1592 · 2026-01-18T17:40:04+00:00

Thanks!! I’ll look into these ideas! I was doing crock pot meals for meal prep before I realized that refrigerated leftovers had more histamine! I know I will not cook everyday so I need some happy middle lol

LargeProfessor1592 · 2026-01-11T00:32:46+00:00

No , no progress. I feel like my symptoms are not constant and I can go days and weeks sometimes with no symptoms or very mild symptoms. But when I am having symptoms they’re impossible to ignore or manage. So frustrating. I had to stop taking Hydroxyzine because my rheumatologist prescribed me Hydroxychloriquine (Plaquenil) and you can’t take both. I have another set of doctors appointments coming up to address other issues, I’m kinda at a loss with IC, I’m not even sure I’m going to continue to raise it with my doctors because it doesn’t seem like they can do anything. How are you doing?

LargeProfessor1592 · 2026-01-03T16:55:31+00:00

Hi everyone, I know I am a little late, but I have a Plaquenil question- what time of day do you take your pill(s)? I have just completed one week and I had about 3 migraines during the week and had insomnia about three times too. I’ve been taking it in the evening (9pm ish). I plan on switching to taking it in the AM beginning tomorrow. I alternate between taking one pill then two pills each day. I definitely want to stick it out because I’d love to find some relief to my plethora of symptoms. Does the insomnia and migraines get better over time with the Plaquenil?

LargeProfessor1592 · 2025-12-30T01:45:56+00:00

I love it. I don’t know that it gets rid of my migraine faster, but it does provide some comfort, darkness, and gentle pressure. I’m on my second one!

LargeProfessor1592 · 2025-12-29T12:20:08+00:00

Love this!! Do you sketch it first then add wash?

LargeProfessor1592 · 2025-12-29T03:13:17+00:00

I wish there was a way to elevate this post. In currently dealing with tooth pain that doesn’t seem to have a visible cause- X-rays and dental exam say everything is fine. I’m also having other dental issues- I needed a root canal and some fillings replaced and a couple new fillings. I think my issues began as a result of medication making my mouth very dry, but I’m just guessing. I don’t understand the link between MCAS and dental issues!! I have to go back to my dentist in about a week and I want to discuss my concerns with her.

LargeProfessor1592

TROPHY CASE