insertclevernamehere

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About insertclevernamehere

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  1. I finally got in with a specialist and had a full POTS workup! I do meet the HR criteria most of the time (with the occasional good day where it's more of a 20 BPM jump), but I don't show any signs of actual autonomic dysfunction? QSART and the breathing/HRV tests were apparently totally normal. I've also been through almost all of the POTS meds with no luck (still waiting on whether or not the specialist will give my local doctor the OK to try out Ivabradine, since my standing HR has been anywhere from 105 to 150 lately). My local neurologist wants me to see a nephrologist now. My kidney function tests were all good, but my electrolytes have been low or at least borderline low most of the time, plus my renin/aldosterone are a tiny bit high despite drinking like a gallon of water a day and having low BP. Just wanted to ask what experiences people have had with seeing a nephrologist, and if there's any specific questions I should ask! I think Gitelman's and Nutcracker Syndromes are rare things I should remember to ask about, but is there anything else to make sure to mention? Thanks! 😊
  2. insertclevernamehere

    Vitamin C & POTS

    I don't think that study is about Vitamin C specifically, so much as that high doses of Vitamin C is one way to raise nitric oxide levels, which are low in the "low flow" type POTS. I think it would make other kinds of POTS worse, since it's a vasodilator? I'm trialling Losartan for suspected low-flow POTS right now, which also raises nitric oxide (and lowers angiotensin II). I'm going to need to find something else, since it's dropping my blood pressure too low at the lowest dose, but I've definitely noticed a bit of improvement in brain fog and HR on it. Not sure if there's other supplements that would be better side-effect-wise for that than Vitamin C, but hope it helps you!
  3. insertclevernamehere

    Parasympathetic dysfunction

    Have you been checked out for Autoimmune Autonomic Gangliopathy? I think Pyridostigmine is supposed to help with parasympathetic issues, maybe ask your doctor if you can try that?
  4. I sometimes obviously meet the HR criteria for POTS, sometimes not at all, no idea what's going on there. My doctor let me do a saline trial, and I also felt worse with that!? Resting HR went UP and I felt like my pulse was really uncomfortably strong, like I'd just lightly touch my arm and I felt like the blood vessels in my arm were going to explode. With a blood pressure of 105/70. I'll look into licorice though, thanks! I'd definitely take a year of feeling better, even if just to buy me some time to get this testing done, since I really can't function right now. How much did you need to take, and how long did it take to notice any effect?
  5. I've had a brain and pituitary MRI, plus an abdominal ultrasound, all were good. It actually seems like (... as far as I understand from my medical degree consisting of a few hours on Khan Academy) the adrenals/RAAS system is doing its thing in that case? Hypovolemia -> make a bunch of renin -> angiotensin II -> aldosterone, just that the high aldosterone -> increase blood volume and sodium part seems to either be broken or has some other issue working against it? Apparently the renin/aldosterone ratio was exactly in the middle of the range, just that both were a teeny bit above range. I do remember my cardiologist saying that my "peripheral resistance" was too high, which would explain why everything with the slightest vasoconstrictive effect makes me feel like absolute garbage (apparently even beta blockers and fludrocortisone do this!? jeez...). Just no idea what would cause this weird combination of things or how to go about fixing it 😩
  6. insertclevernamehere

    Stroke like symptoms.

    I have this pretty much all of the time, it occasionally takes short breaks and usually gets worse if I'm doing a lot of activity. I had every neurological test under the sun (MRI, EEG, spinal tap, SSEP, NCS), all normal. Neurologist said it's basically like a migraine aura set off by my blood vessels going a bit haywire trying to keep my circulation going, but that it's not dangerous and I shouldn't worry about it.
  7. Thank you for the responses 😊 That cortisol issue sounds hard I don't think Ivabradine is really on the list right now, since it seems more like a low blood volume thing than a tachycardia thing, but thanks for the suggestion! I got my results back from the endocrinologist, my cortisol and ACTH are definitely good, but my renin and aldosterone are a tiny bit HIGH? Isn't that the opposite of what is supposed to happen with hypovolemic POTS ("renin aldosterone paradox"?)? Where is all of my sodium and water going then? 🤔 I got a Florinef prescription too, which has the only effect of making every symptom I've had way, way worse. Ughhh, so frustrated and even more confused 😞
  8. insertclevernamehere

    Suddenly very dark urine.

    Your urine is brown? I think you need to get to a doctor ASAP, that could be serious. Even if it's just dehydration, if you can't drink enough water, you probably need IV fluids.
  9. Thanks for the replies everyone! Sounds like people have such different experiences, no wonder this is such a confusing illness ☚ī¸ Heart MRI was fine, at least. Although it's crazy when you're sick enough that you start thinking "I wish it was just a heart defect, then all I'd need is heart surgery!". My neurologist did the standing test in his office, and apparently I was either having a good day/did it wrong when I did it at home, or a really bad day when he did it, but my HR went up to and stayed at 140. He said that, whether or not it's technically "POTS", my HR/BP changes and my poor response to vasoconstrictors made him think I pretty certainly have hypovolemia, and not neuropathic blood pooling or excessive noradrenaline. This is "low flow" POTS, right? Anyways, I guess they somehow missed that my sodium is always a bit low (...), so they did a 24-hour urine test which was right on the border of normal and high. But given the hyponatremia, I'm peeing out proportionally too much salt. I got referred to an endocrinologist and I'm waiting on a full adrenal workup (including aldosterone and renin). My cortisol was normal last time, but she's rechecking it. I'm a bit confused about what's going on here though. "Low flow" POTS should include low aldosterone (and renin), right? But I've never seen anything mentioning hyponatremia or high urine sodium in anything related to dysautonomia. Are there other reasons, aside from Addisons, that I would be hypovolemic and pee out too much salt? My kidney function tests were all totally normal. Why isn't this a finding in POTS if (at least some) people do have low aldosterone, or is it, and just not often measured/reported? I guess I'm getting the results soon, I just wanted to know what I should be looking out for so I can be prepared for the appointment.
  10. Hi guys! Just wondering if anyone has had a similar set of issues and, if so, what helped them! For the past year or two, I've been feeling run down and not really able to exercise (used to be super athletic, which seems common for dysautonomia patients), plus having a hard time with cognitive stuff and really frequent "migraine aura"-type symptoms. I think I have it much easier than a lot of you guys - really feel for people who can barely stand I don't think I have POTS. I haven't had a TT test, but the "poor man's TT test" shows that my HR goes from about 80 lying down and stays at 95-100 standing up for a while. Holter monitor showed that my HR runs a bit higher than normal, and stays at 80 or above when I sleep. I don't have orthostatic hypotension either. My BP goes from about 95/60 lying down to 95/75 standing up. When I did a stress EKG, it went up to 140/105. Cardiologist seemed surprised that my diastolic blood pressure goes up so much. In general, I can tolerate low-intensity exercise without an issue, but when I do higher intensity exercise, I get really bad chest pain and just... can't go any faster. I could try to sprint and my body would just top out at a slow jog. I do get presyncope occasionally if I'm standing for too long, but I can avoid it by just kinda moving my feet around and crossing my legs if I'm standing in line. Cardiologist said echo was fine, he's doing a heart MRI just to be sure, but he thinks it will be normal. I've tried a ton of meds and nothing is working at all. Anything that lowers the heart rate seems to drop my blood pressure unacceptably low, and anything that raises the blood pressure makes my heart feel like it's jumping out of my chest and I have what feels like a constant migraine aura (vision issues, trouble finding words, etc), which my neurologist said is caused by too much vasoconstriction. Salt/water and compression socks don't make a difference, although I haven't tried florinef yet. Both neurologist and cardiologist have said something about too much noradrenaline, but isn't that basically the same issue as in HyperPOTS? Why would my systolic blood pressure stay so low in that case? Thanks for reading this wall of text, would really appreciate any replies