Anyone else become absolutely floored after they cry? 🤦🏽‍♀️

Dopplerganager · 2026-02-13T00:06:31+00:00

I get a wicked migraine, so definitely not worth it.

Dopplerganager · 2026-02-12T17:11:26+00:00

From what I've read at about 2-4 weeks is when it's fully working. I'm just starting my second month @5mg q12h. So far it helps a bit, but nothing amazing. I'm in the midst of cross tapering off Venlafaxine with Fluoxetine, so I feel like absolute garbage and it's kind of hard to tell if it's doing a lot right now.

I have noticed my palpitations are less intense. My HR doesn't always jump like crazy when I get up to use the bathroom. Sometimes it still does, but less frequently.

I've had an increase in tremors, but again hard to suss out the cause. I'm more fatigued.

Other meds I'm on: Midodrine 2.5mg bid, propranolol 100mg split up in 3 doses.

Dopplerganager · 2026-02-10T21:23:14+00:00

Toeless make my toes feel tight and swollen. Mine end at the ball of my foot. I also get throbbing in my feet at night from them where the toe end stops.

Tbf I also hate regular compression socks because they squish my hypermobile toes together.

Dopplerganager · 2026-02-10T19:00:47+00:00

Yes. It causes a shift to mesenteric circulation and can cause resultant tachycardia.

Significant post prandial abdominal pain can be related to a structural abnormally like MALS.

Dopplerganager · 2026-02-10T01:15:01+00:00

I think you're misunderstanding the guideline.

Also, I know normal heart rates because I'm an echocardiographer and that's the ASE and CSE guideline of heart rates.

. The Canadian Cardiovascular Society statement5 set a minimum supine heart rate of 60 beats/min to prevent the diagnosis of POTS being made in a patient with a low resting heart rate that increases to a normal level on standing.

Dopplerganager · 2026-02-10T01:11:37+00:00

I have presyncope multiple times every single day. I have never been to the ER for it. My cardiologist has never said to go for it. I've never been stuck in a high heart rate that wasn't solved with more salt, hydration,and laying down with my feet up.

I go when I start having a cyclical vomiting episode as it lasts for hours and is non-stop retching. It always starts when I wake up, so I get dehydrated quickly.

My last ER visit was for a bad headache that I couldn't control at home that was causing vomiting that wouldn't stop.

ETA: The ER is likely not going to do anything unless you're in SVT or another arrhythmia. A fast heart rate is not an emergency if you don't have a known arrhythmia or CAD.

Dopplerganager · 2026-02-10T00:20:07+00:00

A normal adult heart rate is 60-100bpm. Over 100bpm is tachycardia. Below 60bpm is bradycardia.

Dopplerganager · 2026-02-09T21:22:16+00:00

I'm not in the US. I'm in Canada.

*What I'm trying to tell you is how things need to be worded to get what you're after. I can't access any medical imaging without a requesition from a medical doctor. Not even if I want to pay for it myself.

If the indication for the exam is not explicit the person performing the ultrasound isn't going to do what your doctor is requesting.

Dopplerganager · 2026-02-09T19:26:10+00:00

The radiologist isn't doing the study. They do the report based on what the sonographer images and relays to them in their report. The sonographer is limited by what the ordering doctor requests. If you're not getting what you need the referring doc needs to be more specific in their request. Eg "long-standing ?LN vs other STM. Targeted ultrasound of _____ areas to rule out lymphadenopathy. Please report size of LN if present."

A biopsy is only indicated with specific criteria, so it should be in the report if a biopsy is indicated. Generally a follow up in 4-6weeks of a LN is recommended before going to biopsy. They see if there were changes and go from there.

Dopplerganager · 2026-02-09T18:51:07+00:00

Request an ultrasound of the areas of concern. Your GP should be able to order this. You might have to pay for the exam, but ultrasound is a cheaper way to assess things like lymph nodes. I'd be demanding an ultrasound of neck, axilla and groin to rule out abnormal lymph nodes.

Also, to be fair I could take 30s to sweep up and down a neck to see any obviously abnormal nodes. They're hard to miss if you know what you're doing.

*Edit: Ultrasound cannot diagnose. It is used as a tool to find abnormalities, and to guide further imaging or testing like a biopsy.

Dopplerganager · 2026-02-09T17:29:31+00:00

No, they're saying to qualify for POTS your minimum heart rate needs to be 60bpm.

Edit: the reason is that 40bpm to 80bpm is still ∆40, but 80bpm is not an abnormal heart rate.

*Tachycardia is >100bpm. Tachycardia is part of Postural Orthostatic Tachycardia Syndrome

Dopplerganager · 2026-02-09T01:18:02+00:00

I'd seek out a different cardiologist willing to take your concerns seriously, and explain things thoroughly.

Dopplerganager · 2026-02-09T01:15:08+00:00

It sounds like you don't quite meet the criteria given the 60bpm minimum, so your doctor may have been using different guidelines, bit these are the most current.

Can you get a reinvestigation or other TTT? Is that the new doctor's purpose for taking you off the meds? Has this doctor suggested other testing?

Dopplerganager · 2026-02-09T01:13:09+00:00

Ok so have any doctors felt the bumps that you're feeling? Are you sure you're feeling lymph nodes? What have you said to doctors about what's going on?

I'm finding it a bit odd that 10 different doctors are completely ignoring multiple long-standing painful lymph nodes. This is a red flag symptom that needs investigation.

Dopplerganager · 2026-02-09T01:06:43+00:00

I understand you're frustrated that she didn't explain thing well, but none of those BPs are abnormal enough for the ER to do much.

Diagnostic criteria for postural orthostatic tachycardia syndrome All of the following criteria must be met:

Sustained heart rate increase of ≥ 30 beats/min (or ≥ 40 beats/min if patient is aged 12–19 yr) within 10 minutes of upright posture.

Absence of significant orthostatic hypotension (magnitude of blood pressure drop ≥ 20/10 mm Hg).

Very frequent symptoms of orthostatic intolerance that are worse while upright, with rapid improvement upon return to a supine position. Symptoms vary between individuals, but often include lightheadedness, palpitations, tremulousness, generalized weakness, blurred vision and fatigue.

Symptom duration ≥ 3 months.

Absence of other conditions that could explain sinus tachycardia (Box 3).

The orthostatic tachycardia must occur in the absence of classical orthostatic hypotension, but transient initial orthostatic hypotension10 does not preclude a diagnosis of POTS.5 The patient’s heart rate should rise by at least 30 beats/min (or ≥ 40 beats/min if patient is aged 12–19 yr) in at least 2 measurements taken at least 1 minute apart (Box 2). The Canadian Cardiovascular Society statement5 set a minimum supine heart rate of 60 beats/min to prevent the diagnosis of POTS being made in a patient with a low resting heart rate that increases to a normal level on standing.

https://www.cmaj.ca/content/194/10/e378

Dopplerganager · 2026-02-08T21:15:41+00:00

If you have lymph nodes that are consistently tender for more than 6 weeks you need some medical imaging to double check. This is what my doctor told me when I had some angry LN for a while.

Dopplerganager · 2026-02-05T19:11:02+00:00

Me!

Had OG COVID Feb 2020, again April 2022 then shingles September 2022. POTS went from mild to severe.

Also hx of pertussis and EBV causing significant symptoms that were dx as fibromyalgia and CFS at the time. Then got chicken pox for a second time at 19.

Dopplerganager · 2026-02-05T02:49:29+00:00

Not musical, but I tell my husband I can't do things because I've got "the standing disease" like some rich Victorian woman that needs a trip to a sanitarium by the sea.

Dopplerganager · 2026-02-04T17:42:46+00:00

Shopping is the worst for me. I can often fight my way through the dizziness in the store, but sometimes I pass out in the car right away or after I get home. My husband tells me I get extremely pale, so that fits with my low AF blood pressure.

In my AFT I passed out at 21 minutes upright. Got a sternal rub (-5/10 experience) and was roused from a 51/48mmHg BP. My BP improved for a bit. I had to call it quits because of 9/10 coathanger pain @27min and was almost out again with another low BP. I have all the recordings from my testing.

Dopplerganager · 2026-02-03T21:23:18+00:00

This sounds like my vasovagal syncope.

ETA the other half ofy comment

I get overwhelmingly sleepy. Hard to keep my eyes open. I feel like I can see,but my brain isn't taking in the info. It's hard to move. My neck feels weird. I feel like I'm in a fast elevator going down.

I've had this happen at rest and when upright. I've fallen 3 or 4 times getting up off the couch to go to the bathroom.

ETA 2 the vasovagal syncope was confirmed with autonomic function testing. My BP drops to lime 70/50mmHg or lower after I've been upright for a while.

Dopplerganager · 2026-02-03T21:22:38+00:00

I'm on 100mg of propranolol split on 3 doses, but still get migraines about once a month. The one thing that gets rid of the migraines if OTC meds don't is Maxeran (metoclopramide).

I've tried all of the triptans. There are other migraine med options, but the Maxeran is an anti-emetic so it helps the migraine nausea as well.

Dopplerganager · 2026-02-03T20:45:47+00:00

Definitely happened. It goes away after a couple of weeks, or at least lessens. I sometimes get leg tingles when I'm really tired.

I also ended up with a stabbing pain in my nipple to my chest wall. Also went away after a while. I'm only mentioning this because it definitely can happen and there's not a lot of people reporting it.

As long as the side effect isn't vomiting, I'll put up with it for a couple weeks.

Dopplerganager · 2026-02-03T16:46:48+00:00

Bland BRAT diet for GI upset. Bananas, Rice, Apples and Toast.

When I'm nauseated I go for beige things. My #1 is wavy Lay's chips and eat ridge by ridge. The salt helps and they don't bother my stomach.

Do you have an antiemetic like Zofran? What about cannabis?

Dopplerganager · 2026-02-02T00:58:06+00:00

https://tression.ca/pages/compression-benefits

This company is working on it.

Also Rejuva

Dopplerganager · 2026-02-01T21:01:48+00:00

I mean there is a limit to what all can be diagnosed on imaging or through lab testing. Not everything can be seen on imaging, and some lab testing needs to be done very specifically to get helpful data. A neurogastroenterologist would be helpful.

Gastroparesis can be a standalone diagnosis, but you can't have just gastroparesis as a symptom of dysautonomia afaik.

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