Postural Orthostatic Tachycardia Syndrome

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Tenacity

Tenacity

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Ok BP at the doctors office just means "not high". I've heard of multiple people with POTS having very low blood pressure and improving symptoms with salt, adrenal glandulars and pro-parasympathetic minerals like potassium and magnesium. Lyme and/or Mold seem to be common among those with POTS as well.
I'll make sure I find out next time. I have decided to up my salt intake to at least 6g daily. I should be all covered on the alkali minerals based on my diet.

I've had some correspondence with Dr Peat, and he said that some people have told him that niacinamide has helped their orthostatic tachycardia. So I'm going to take 25mg four times daily.

I've also started to supplement with Carlson's liquid D3. 2 drops orally and 1 drop topically to begin with.
 
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Tenacity

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I have increased my dose to 8000 IU of vitamin D3 orally, under the Vitamin D council's guidance.

I'll have supplemented it for a week, tomorrow. My anxiety has been practically eliminated, only cropping up for brief moments in the evening. I'm nowhere near as sick as I once was. My standing pulse is also much more frequently below the threshold of a 30 beat difference from laying down. I think it could be exactly what I'm missing. I'm eager for the dissociation to finally diminish to nothing.

The niacinamide makes me feel pretty good too. I feel warm and happy shortly after taking it. I'm taking up to 50mg with every meal.
 

Dolomite

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This is interesting. I have low BP and an Epicocum species fungal growth located somewhere between tooth 12 and my nostril. I do not experience POTS necessarily although there have been times I have a high pulse for no good reason for extended times. I began to have anxiety adrenaline type events and that led me to Ray Peat.

I am older and certainly have more estrogen but I am working on metabolism and hormones through diet. @Janelle525 discussed her anxiety and living in a house with mold. Since moving I think she is better.
 
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I had an appointment with a cardiologist yesterday. He says he doesn't think it's POTS because I don't present the typical symptoms, although I do have orthostatic tachycardia. He says it's possible I may be suffering from more than one illness. I've got a barrage of tests to look forward to, including a urine test, echocardiogram and a tilt-table test. I think he's currently concerned that I might have a pheochromocytoma.

Will continue updating with my findings.
 

Blossom

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I had an appointment with a cardiologist yesterday. He says he doesn't think it's POTS because I don't present the typical symptoms, although I do have orthostatic tachycardia. He says it's possible I may be suffering from more than one illness. I've got a barrage of tests to look forward to, including a urine test, echocardiogram and a tilt-table test. I think he's currently concerned that I might have a pheochromocytoma.

Will continue updating with my findings.
Yes, please do!
 
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This study here shows how low vitamin D metabolites can lead to orthostatic tachycardia:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3433525/pdf/bcr.02.2012.5730.pdf

I'm hoping this is the cause for my case. In the above case study, this woman's 25(OH) vitamin D levels were 35 ng/ml, which is 'adequate', and her 1,25(OH) 2 vitamin D3 levels were low at 24 pg/ml. I haven't had my 1,25(OH) 2 vitamin D3 measured, but my 25(OH) vitamin D levels were 8.4ng/ml, way lower than in this presented case, and I'm guessing as a result my 1,25(OH) 2 vitamin D3 levels are low too. I'm hoping once vitamin D status is optimal I will fully recover. I've already felt benefit from taking 8000 IU daily for three weeks. Given that my levels are much lower than in this case, it'll likely take longer than a month to recover.

That is my current theory. The only alternative theory I can see is that it's a pheochromocytoma. I really hope that isn't the case.
 

Antonello

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Looked up your previous posts.
I would bet money you are toxic in copper.
How much liver, dates and chocolate did you eat the past 24 months??
Do an aproximation, enter it in cronometer and give me the copper amount in miligrams.
A healthy liver removes up to 2mg per day. When you don't make bile this goes to zero.

When your liver and brain get full of copper, estrogen rises to try to bind it, protect you and hopefully to piss some if it out.
Estrogen + copper in the CNS give you POTS.
Do not try to block the estrogen or you will suffer.
Only protein, histidine/carnosine and improving the bile flow can bring it down.
because histidine is a precursor to carnosine I guess there is no need to supplement. How much histidine do you reccomend? Do you think there is the need to supplement zinc with it? what would be the best way to increase bile flow? I litterally see my skin change color everytime I poop with bile or not so it must be the copper. thanks in advance
 

Mossy

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This study here shows how low vitamin D metabolites can lead to orthostatic tachycardia:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3433525/pdf/bcr.02.2012.5730.pdf

I'm hoping this is the cause for my case. In the above case study, this woman's 25(OH) vitamin D levels were 35 ng/ml, which is 'adequate', and her 1,25(OH) 2 vitamin D3 levels were low at 24 pg/ml. I haven't had my 1,25(OH) 2 vitamin D3 measured, but my 25(OH) vitamin D levels were 8.4ng/ml, way lower than in this presented case, and I'm guessing as a result my 1,25(OH) 2 vitamin D3 levels are low too. I'm hoping once vitamin D status is optimal I will fully recover. I've already felt benefit from taking 8000 IU daily for three weeks. Given that my levels are much lower than in this case, it'll likely take longer than a month to recover.

That is my current theory. The only alternative theory I can see is that it's a pheochromocytoma. I really hope that isn't the case.
I’d be curious to know how the vitamin D and niacinamide have worked out for your PoTS. Do you have any updates?
 
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I’d be curious to know how the vitamin D and niacinamide have worked out for your PoTS. Do you have any updates?

Hi Mossy, I take both of these daily when I have them available, 2k IU of vitamin D and up to a gram of niacinamide. I can't say I notice anything different from the vitamin D, maybe minor skin improvement? With niacinamide, though, it definitely has a significant effect on my day-to-day wellbeing. The most noticeable thing is it reduces the frequency of palpitations. I think it also helps to reduce nighttime anxiety and sleep disturbance, but not sure. I also take progesterone and pregnenolone daily and find these also help with the anxiety from dysautonomia. Being well rested, hydrated and fed is also really important for this condition. Right now I'm investigating the role of the thyroid in POTS. Peat's recent interview on One Radio Network is enlightening on how thyroid affects the working of the nervous system, including the vagus nerve. I think it's likely that POTS is a result of a hyperactive parasympathetic nervous system being balanced out by an exaggerated sympathetic response.
 

Mossy

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Hi Mossy, I take both of these daily when I have them available, 2k IU of vitamin D and up to a gram of niacinamide. I can't say I notice anything different from the vitamin D, maybe minor skin improvement? With niacinamide, though, it definitely has a significant effect on my day-to-day wellbeing. The most noticeable thing is it reduces the frequency of palpitations. I think it also helps to reduce nighttime anxiety and sleep disturbance, but not sure. I also take progesterone and pregnenolone daily and find these also help with the anxiety from dysautonomia. Being well rested, hydrated and fed is also really important for this condition. Right now I'm investigating the role of the thyroid in POTS. Peat's recent interview on One Radio Network is enlightening on how thyroid affects the working of the nervous system, including the vagus nerve. I think it's likely that POTS is a result of a hyperactive parasympathetic nervous system being balanced out by an exaggerated sympathetic response.
Thank you for the detail. I’m always interested in success stories, or even semi-success, when supplements are taken continually and long-term.
 
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Tenacity

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Did you find anything that lessens your POTS?
A few things. I know that poor sleep and blood sugar control worsen symptoms. Stress seems to be at the core of it for me, perhaps chronic stress gradually weakening the nervous system throughout life until it breaks.

I suspect serotonin is involved. POTS patients usually have low CO2 and low platelet serotonin, meaning serotonin activity is high. Niacinamide has been helpful for me, by reducing free fatty acids (which can cause palpitations) and reducing the nitric oxide associated with poor sleep. Niacinamide apparently can also lower serotonin. I take between half a gram and a gram per day.

Salt is another thing that can reduce serotonin, and one case study found that salt loading can reverse the sympathetic exaggeration in POTS. The protein that clears noradrenaline, NET, is also dependent on sodium, so that may be another mechanism. I aim to consume two teaspoons daily, but have only recently started to put this into practice.

Thyroid is probably also involved, as it affects the functioning of the nervous system. Low thyroid can apparently cause gastroparesis, which is often co-morbid with POTS. I'm still looking into the thyroid connection though. Thyroid apparently makes you more sensitive to adrenaline, so seems like a risky thing for a POTS sufferer to mess around with.

I'm currently in a bad flare up due to poor sleep and work stress, but until recently my POTS has only continuously gotten better. I'm still working to understand the condition and improve my life circumstances, but I'm hopeful I can recover.

I take progesterone and pregnenolone for anti-stress purposes. I've no idea how I'd be if I hadn't been taking them, but they seem generally protective. I also take vitamin D3 in the winter.
 

Tarmander

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A few things. I know that poor sleep and blood sugar control worsen symptoms. Stress seems to be at the core of it for me, perhaps chronic stress gradually weakening the nervous system throughout life until it breaks.

I suspect serotonin is involved. POTS patients usually have low CO2 and low platelet serotonin, meaning serotonin activity is high. Niacinamide has been helpful for me, by reducing free fatty acids (which can cause palpitations) and reducing the nitric oxide associated with poor sleep. Niacinamide apparently can also lower serotonin. I take between half a gram and a gram per day.

Salt is another thing that can reduce serotonin, and one case study found that salt loading can reverse the sympathetic exaggeration in POTS. The protein that clears noradrenaline, NET, is also dependent on sodium, so that may be another mechanism. I aim to consume two teaspoons daily, but have only recently started to put this into practice.

Thyroid is probably also involved, as it affects the functioning of the nervous system. Low thyroid can apparently cause gastroparesis, which is often co-morbid with POTS. I'm still looking into the thyroid connection though. Thyroid apparently makes you more sensitive to adrenaline, so seems like a risky thing for a POTS sufferer to mess around with.

I'm currently in a bad flare up due to poor sleep and work stress, but until recently my POTS has only continuously gotten better. I'm still working to understand the condition and improve my life circumstances, but I'm hopeful I can recover.

I take progesterone and pregnenolone for anti-stress purposes. I've no idea how I'd be if I hadn't been taking them, but they seem generally protective. I also take vitamin D3 in the winter.

Have you looked at all into Dr. Diana Driscoll? She has a supplement that ups acetylcholine and I know some people swear by it for POTS. Also have you ever tried Diamox?
 
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Tenacity

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Have you looked at all into Dr. Diana Driscoll? She has a supplement that ups acetylcholine and I know some people swear by it for POTS. Also have you ever tried Diamox?
I have a little, I watched a few of her YouTube videos and don't remember feeling like I came away all that enlightened. She seems to focus on Ehlers-Danlos syndrome as a cause of POTS more, and I don't suffer from that. I feel like I remember reading bad things about acetylcholine in Peat's 'The Dark Side of Stress' article, so I'm wary of it, but it's worth another look. I have suffered from choline deficiency symptoms in the past that eggs helped to alleviate, so I think if I wanted to increase anything related to choline I would eat more eggs. I haven't tried Diamox, although I have heard some people found relief from it. If serotonin is a factor in POTS then increasing carbon dioxide would be important.
 

Tarmander

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I have a little, I watched a few of her YouTube videos and don't remember feeling like I came away all that enlightened. She seems to focus on Ehlers-Danlos syndrome as a cause of POTS more, and I don't suffer from that. I feel like I remember reading bad things about acetylcholine in Peat's 'The Dark Side of Stress' article, so I'm wary of it, but it's worth another look. I have suffered from choline deficiency symptoms in the past that eggs helped to alleviate, so I think if I wanted to increase anything related to choline I would eat more eggs. I haven't tried Diamox, although I have heard some people found relief from it. If serotonin is a factor in POTS then increasing carbon dioxide would be important.
It is weird, I ate 12 eggs a day for around a month or so maybe a couple years ago to try and up my choline levels. Did not work nearly as well as just supplementing with it. Maybe something about not digesting it. Let us know what you find.
 
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Tenacity

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Hey @Tenacity, how's it going with the POTS? Has it improved?
Hi there, thanks for asking. Sorry about how long it has taken to reply.

In short, I'm doing pretty well at the moment. I hesitate to say that I don't have POTS anymore, but I haven't had orthostatic tachycardia by any meaningful definition for at least two weeks. The difference between my resting and standing heart rate is not larger than 12 beats or so, which I read is normal. I think the main contributor to this is that I have begun taking thyroid.

I found this winter to be particularly harsh, with many of my neurological symptoms worsening, despite feeling a little better during August. I was getting fed up and was trying to look for new ways to approach the problem. I started looking into thyroid again, as I found it a confusing topic, rereading Peat articles and Barnes's work. Then I read an article about hypothyroidism that stated this:

"Thyroid hormone effects on the heart and peripheral vasculature include decreased SVR and increased resting heart rate, left ventricular contractility, and blood volume (Figure 2)." [Thyroid Disease and the Heart, Journal of Circulation]

I had previously read an article on POTS that indicated these parameters in the opposite direction.

"We conclude that all POTS is related to decreased CO, decreased central blood volume, and increased systemic vascular resistance and that a variant of POTS is consequent to postural hyperventilation." [Postural Hyperventilation as a Cause of Postural Tachycardia Syndrome: Increased Systemic Vascular Resistance and Decreased Cardiac Output When Upright in All Postural Tachycardia Syndrome Variants, Journal of the American Heart Association]

And finally, somebody directly asked Peat about causes of POTS in an email.

"JO: Do you know what causes POTS?

Ray: Hypothyroidism is a common cause."

These things all inspired me to begin to investigate thyroid therapy more seriously. My mother has hypothyroidism, poorly treated by just T4, and I have always had a fairly slow pulse, just 60 beats per minute at rest. I would have probably tried thyroid sooner if I wasn't so put off by the legality and confusion about obtaining it.

I'm now three weeks into therapy with a combination product, starting with the smallest possible dose and increasing as necessary every two weeks, and all of my hemodynamic symptoms are way better. I don't notice any exercise intolerance when cycling to work, palpitations have become rare and much less intense, and my heart now beats in a steady, smooth rhythm. My resting pulse is often 78 beats per minute, and afternoon temperatures are now reaching 98.3 degrees Celsius. My extremities are now noticeably warm rather than cold or clammy. I no longer suffer from insomnia, often feeling tired enough to sleep by 11pm. I still don't feel my old self, my consciousness doesn't feel how it should, but I'm feeling confident that things are finally moving in the right direction.

My symptoms were a little worse when I first started thyroid, but that was a price worth paying for the benefits I feel now.

Hope this helps.
 

Vileplume

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Hi there, thanks for asking. Sorry about how long it has taken to reply.

In short, I'm doing pretty well at the moment. I hesitate to say that I don't have POTS anymore, but I haven't had orthostatic tachycardia by any meaningful definition for at least two weeks. The difference between my resting and standing heart rate is not larger than 12 beats or so, which I read is normal. I think the main contributor to this is that I have begun taking thyroid.

I found this winter to be particularly harsh, with many of my neurological symptoms worsening, despite feeling a little better during August. I was getting fed up and was trying to look for new ways to approach the problem. I started looking into thyroid again, as I found it a confusing topic, rereading Peat articles and Barnes's work. Then I read an article about hypothyroidism that stated this:

"Thyroid hormone effects on the heart and peripheral vasculature include decreased SVR and increased resting heart rate, left ventricular contractility, and blood volume (Figure 2)." [Thyroid Disease and the Heart, Journal of Circulation]

I had previously read an article on POTS that indicated these parameters in the opposite direction.

"We conclude that all POTS is related to decreased CO, decreased central blood volume, and increased systemic vascular resistance and that a variant of POTS is consequent to postural hyperventilation." [Postural Hyperventilation as a Cause of Postural Tachycardia Syndrome: Increased Systemic Vascular Resistance and Decreased Cardiac Output When Upright in All Postural Tachycardia Syndrome Variants, Journal of the American Heart Association]

And finally, somebody directly asked Peat about causes of POTS in an email.

"JO: Do you know what causes POTS?

Ray: Hypothyroidism is a common cause."

These things all inspired me to begin to investigate thyroid therapy more seriously. My mother has hypothyroidism, poorly treated by just T4, and I have always had a fairly slow pulse, just 60 beats per minute at rest. I would have probably tried thyroid sooner if I wasn't so put off by the legality and confusion about obtaining it.

I'm now three weeks into therapy with a combination product, starting with the smallest possible dose and increasing as necessary every two weeks, and all of my hemodynamic symptoms are way better. I don't notice any exercise intolerance when cycling to work, palpitations have become rare and much less intense, and my heart now beats in a steady, smooth rhythm. My resting pulse is often 78 beats per minute, and afternoon temperatures are now reaching 98.3 degrees Celsius. My extremities are now noticeably warm rather than cold or clammy. I no longer suffer from insomnia, often feeling tired enough to sleep by 11pm. I still don't feel my old self, my consciousness doesn't feel how it should, but I'm feeling confident that things are finally moving in the right direction.

My symptoms were a little worse when I first started thyroid, but that was a price worth paying for the benefits I feel now.

Hope this helps.
So glad to hear you’ve improved! Thanks for the update.

A few weeks ago I developed some heart rate issues as well. My sedentary heart rate would get very high (up to 110s) and I was getting hot flashes multiple times a day.

I started dosing T3 last week, and my sedentary heart rate has decreased lower and lower everyday, which I take as a reduction in stress hormones. Haven’t had a hot flash since. Cheers to our improvements.
 

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