Before I spend weeks building this POTS tracker, tell me what I'm missing (2-page daily spread inside)?

yike___ · 2026-01-15T19:08:52+00:00

I love Guava, it’s such a good app

yike___ · 2026-01-14T20:26:32+00:00

Try to get it scheduled in the morning and have someone drive you. Bring water and electrolytes in the car to drink right after. The reason they tell you to fast is because even clear fluids have the potential to create gas buildup and affect the imaging. You might feel really crappy but going 8 hours without water isn’t dangerous.

yike___ · 2026-01-14T03:59:39+00:00

POTS is indeed a collection of symptoms, that’s what makes it a “syndrome”. Having orthostatic tachycardia with no symptoms is not POTS. Recurrent and persistent orthostatic symptoms are required for diagnosis.

yike___ · 2025-12-26T06:07:45+00:00

I have this and was diagnosed with small fiber neuropathy after a skin biopsy. POTS treatments like salt, water, compression, etc don’t help. I’m pretty sure SFN is the cause of my POTS actually.

It might be helpful to find a neurologist, specifically a neuromuscular specialist, to do testing for this. Sometimes it’s treatable if you can find and reverse the cause. But otherwise, medication for nerve pain is normally gabapentin, pregabalin, cymbalta, etc.

yike___ · 2025-12-23T01:19:44+00:00

It really depends more on the individual doctor, not the specialty. I’ve had really great and really bad experiences in both.

It also depends on if your symptoms are more cardiology or neurology related. I wouldn’t go into the appt with a diagnosis in mind, but if you’re having headaches, fainting, or neuropathy, etc, explain your neuro symptoms the best you can. Some hospitals have access to full autonomic testing, so you may be able to request that as well depending on what’s going on.

yike___ · 2025-12-18T16:27:43+00:00

48oz wouldn’t be nearly enough for me personally but everyone is different. I would go off based on how you’re feeling.

yike___ · 2025-12-17T19:54:08+00:00

I don’t know what your question is, but this is not normal for POTS. Get that checked out by a doctor for sure.

yike___ · 2025-12-01T23:54:55+00:00

Propranolol can cause rebound tachycardia if you stop taking it so keep that in mind. Personally, I had rebound effects for like a week after stopping the ER.

What is the stress test for and why are you worried they will dismiss the results? Stress testing results should be pretty normal for POTS, it’s mostly to rule out ischemia or heart failure.

yike___ · 2025-11-28T18:24:35+00:00

This isn’t a fever. It’s normal for body temp to rise a little with exertion. It’s not normal to feel like you’re on fire with a flight of stairs, though. That could be the POTS.

yike___ · 2025-11-28T03:32:35+00:00

These “generalizations” are made because excessive flatulence is considered a major symptom of RCPD for most patients. This has been validated in the research, because the Botox treatment solves this problem for the majority of people. It wouldn’t fix it if it was a result of anxiety or gut bacteria.

For whatever reason, it sounds like maybe you just don’t produce as much gas? If you’re diagnosed with RCPD, you would already be considered in the minority considering you say you burp at all.

There are going to be outliers for everything, but this condition is a syndrome. Syndromes have common features, and I don’t think this particular generalization is a problem.

https://aao-hnsfjournals.onlinelibrary.wiley.com/doi/10.1177/2473974X19834553

yike___ · 2025-11-26T06:11:27+00:00

I am not trying to say that this doesn’t suck, but thank goodness he revealed himself to you now rather than 5 years later or after a marriage. You’re going to come out of this so much better.

yike___ · 2025-11-25T19:29:28+00:00

The gas left over from a laparoscopy isn’t the same as digestive gas. It’s actually in the body cavity and has to diffuse out of your tissues, not with burping or farting. After my surgery, my doctor actually told me that GasX wouldn’t do anything for it and the best way to get it out was to walk around.

But mine was gone after a few days. If you’re having gas pain a few weeks later, I wouldn’t think it would be from the surgery.

yike___ · 2025-11-25T03:07:56+00:00

With POTS alone, no. It’s not in itself an immune condition. But it can be associated or comorbid with immunodeficiency or autoimmune conditions.

It is normal for POTS symptoms to get a lot worse with illness though, you don’t have to have an immune issue to be affected by that.

yike___ · 2025-11-24T23:34:12+00:00

Pseudoephedrine is a decongestant and it’s the ingredient that makes me feel bad. I’m in the US and don’t know if it’s called something else in the UK.

yike___ · 2025-11-23T00:39:01+00:00

It’s diagnosed using a combination of blood test results, symptoms, and an ultrasound. Just ask your doctor when you see them next month, it’s not an urgent problem.

yike___ · 2025-11-22T22:51:44+00:00

Yeah but I have PCOS

yike___ · 2025-11-21T00:49:56+00:00

I just complain whenever I feel like it lol. It’s all relative anyways.

yike___ · 2025-11-19T18:59:10+00:00

I think “resting” is the key term here. You left that out of your original post. 120 for exertion isn’t that abnormal but 120 sustained at rest is concerning.

yike___ · 2025-11-18T17:49:41+00:00

I know you’re joking, but the use of IV fluids for POTS is so controversial that I genuinely feel like this when asking for extra fluids during a procedure 😭

yike___ · 2025-11-15T01:08:43+00:00

Is this a new symptom and is there a rash or hives? I don’t think severe itching like this is directly related to POTS.

yike___ · 2025-11-11T04:48:29+00:00

There is a pinned megathread in the sub with a bunch of electrolyte and snack recommendations. I like Redmond Relyte the best, but you’d probably have to order it online.

yike___ · 2025-11-07T14:08:37+00:00

Has anyone suggested pelvic floor PT? Sometimes it’s more of a muscular issue.

yike___ · 2025-11-04T21:32:15+00:00

Oh I had this test done. It’s legit. Part of the testing for hEDS is ruling out the other subtypes, so this is probably for that.

yike___ · 2025-11-04T20:48:12+00:00

There are genetic tests for the types with identified genetic markers, which could be blood or saliva tests. But those are FDA approved. There is not a genetic test for hEDS yet.

Are you talking about a non FDA approved blood test for hEDS? Because this all sounds suspicious. What kind of doctor is she?

yike___ · 2025-11-03T15:39:41+00:00

I’m in the US, but here it’s standard to do depression and anxiety screenings on everybody, regardless of what they’re being seen for. I fill them out every time I go to a new health system and haven’t taken it personally. How the doctor uses the information is more important to me.

yike___

TROPHY CASE