insertclevernamehere

Weird form of dysautonomia I can't find a treatment for - anyone know anything about this?

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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 ^_^

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I have very similar symptoms! Metoprolol does help me somewhat without lowering my BP. I hope you get it figured out-I would love to know how it goes! I haven't tried florinef either.

 

My neurologist said he had a patient just like me, who came from Hawaii to Boston for treatment. He couldn't figure out what was wrong with her either :(

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I have hyperPOTS with too much norepinephrine and extreme vasoconstriction. My diastolic BP goes up like yours (extremely so before I was on medication). What surprises me is that your BP is so low - that can cause some of your cognitive and weakness issues. It can also contribute to the presyncope you experience and headaches. I'm stumped on that one. Sorry I can't be of any help but I hope you find relief and answers soon. 

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Hi insertclevernamehere and welcome to the forum :),

Ivabradine is supposed to reduce heart rate without decreasing blood pressure. I've read that it is only recommended for people with a resting heart rate of 77bpm or higher. You might be a borderline candidate for using ivabradine to lower heart rate, but it could be worth a look, especially if your heart rate rises inappropriately during physical activity.

Do you know how your heart rate responds to physical activity? Chest pain with exercise can coincide with a heart rate that is inappropriately high or a heart rate that doesn't rise enough to maintain oxygen supply appropriate for the level of activity.

Here is a link to some info on ivabradine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448693/

I have persistent migraine aura symptoms, cognitive issues and exercise intolerance that closely match what you described.

My blood pressure is often around those levels at rest and can increase like yours in response to mild-moderate physical activity. I had symptoms of unacceptably low blood pressure when I trialled propranolol as a migraine treatment. I posted some details about my blood pressure and heart rate variations about a month ago, if you're interested in how similar or different my variations are to yours: https://www.dinet.org/forums/topic/29066-anyone-with-pots-had-much-success-evening-out-highs-and-lows-of-heart-rate-and-blood-pressure/

My diastolic blood pressure usually increases by about 20-30 within the first few minutes of standing from a lying position and stays around the higher level while I stay standing, or at least for the first 10 minutes of standing. Sometimes the diastolic increase happens in full immediately upon standing, but sometimes it will rise more gradually over the first 2 or 3 minutes. I have also noticed that if my systolic pressure goes up to the 140s or 150s my diastolic pressure goes up to where it's around 30-40 below the systolic pressure.

My heart rate increases upon standing are higher than yours and my resting heart rate is lower than yours (too low for me to try ivabradine). I have pre-syncope more often than occasionally and it often happens just after standing up, not just after standing for too long.

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Your issue seems that your baseline BP is low, but you aren't really orthstatic. There are some BP raising drugs like florinef which don't cause vasoconstriction and aren't stimulants (though they have other side effects).  Even just salt and water at the recommended levels might help bring up your BP if you do it consistently.

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Salt and water didn't help me enough, midodrine is somewhat helpful, and so are compression stockings and mestinon. IV fluids help more than anything but I haven't been able to feel OK in years despite all of this. 

 

I think that's true of me also, my BP is just baseline low for "no reason" and that's responsible for most of my problems. I used to be hypertensive as a teen and into my 20s so I don't naturally have a low BP and do okay with it, as some do.  

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Thanks for the replies everyone! Sounds like people have such different experiences, no wonder this is such a confusing illness ☹️ 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.

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What kind of cortisol test did they do? Stimulation? A test in the afternoon? 8 in the morning? You can get totally different results with those tests. My 8 am shows I have Addison's, but my body  'cures' itself by the afternoon every day. My body spends every day trying to play catchup from my Addison-like mornings. My adrenals just don't get the signal to work in the mornings. The signal gets triggered around 11 am. I don't know why.

Low sodium too, well, high side of low or the lowest number in the normal range every time.

I am considered low flow POTS too. I have been searching for answers for 10 years. I'm so much better than I was, but there is still a tremendous amount we don't know about my diagnosis.

I hope you get some answers with endocrine. 

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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 😞

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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 😩

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I'm very much like you although I don't produce renin or aldosterone, so I know the reason I am hypovolaemic. Normal cortisol here too.  Fludrocortisone also doesn't help me unfortunately - the vasoconstricting effects outweigh any volume enhancing effects for me too. I had life transforming benefits for about a year from licorice root, it enhances blood volume without the side effects of Fludorocortisone. You might want to look into it as an alternative option. It can be bought online or from a herbal store. The effects wore off after about a year as I think my body adapted to it and probably just started to produce more of the enzyme it suppresses, but that was one fantastic year. 

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In your first post you'd indicated you weren't sure if you had POTS, but your heart rate in the dr's office implies POTS.  It's important to get full testing to rule out any other causes and because it can shape your treatment.  But even with very clear test results it can often be challenging to pinpoint things. The path to improvement often involves a lot of trial and error and many of the treatments are the same regardless of classification.   I hope you feel better soon.

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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?

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On 4/27/2018 at 10:21 AM, insertclevernamehere said:

How much did you need to take, and how long did it take to notice any effect?

Two 450mg capsule daily of Swanson's Licorice Root. 

Effects noticed within a few hours of taking - I was standing (with a grin all over my face) after 8 months of being chairbound. 

Definitely worth a try! I still take them now even though the effects have waned as I don't know how badly off I'd be without them. 

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