Postural Orthostatic Tachycardia Syndrome

[Tenacity]

I've been suffering from this condition for about 7 months now. I've created this thread to serve as a place to put together my thoughts on the nature of this illness, hoping they may benefit other sufferers.

My symptoms seem to centre more on sympathetic over-activation that is often seen in POTS, including orthostatic tachycardia, fatigue, anxiety, dissociation, pain, nausea. I don't seem to have the type that involves fainting, although I have nearly passed out twice.

 

[Tenacity]

Postural Orthostatic Tachycardia Syndrome and Estrogen

Postural orthostatic tachycardia syndrome (POTS) is a condition that features malfunction of the autonomic nervous system. Its main clinical sign is an increase in resting heart rate when transitioning from laying down to standing up, of at least thirty beats per minute or to over 100 beats per minute. Symptoms resulting from this orthostatic intolerance include pre-syncope, syncope, dizziness, lightheadedness, weakness and visual problems. Often, additional symptoms can occur, such as depression, anxiety, panic attacks, pain, pins and needles, headaches, difficulty regulating temperature, fatigue, sleep disturbances, and increased sensitivity of the sympathetic nervous system. Many sufferers find these symptoms debilitating. The cause is considered unknown.

The majority of POTS sufferers are women[1]. Irritable bowel syndrome, migraines, and fibromyalgia, are commonly associated conditions. Each of these conditions are more common in women than in men. This suggests that anatomical or endocrinological differences between men and women can help to explain the cause of the syndrome.

Browsing the Dysautonomia Information Network’s (DINET) message board, I noticed many of the women suffering from POTS also reported suffering from endometriosis, an estrogen-driven gynaecological disease[2]. Others reported disease onset following pregnancy. Changes in the severity of symptoms dependent on phase of the menstrual cycle was also common. I think the status of so called ‘female hormones’ in an individual may contribute to the development of POTS.

Estrogen concentrations in women vary dependent on the phase of the menstrual cycle. Most women reported a worsening of symptoms in the period before, during, and after menses. These are the phases of the menstrual cycle where estrogen is highest[3]. The function of the heart varies during these phases in POTS sufferers. “In POTS subjects, cardiac output and stroke volume were lower and total peripheral resistance was greater in the early follicular phase than MLP after 30 minutes of standing; however, blood pressure and heart rate were similar between phases[4].” During the early follicular phase, progesterone concentrations are lower than estrogen. The reverse trend is seen during the mid-luteal phase. It is the relative proportion of these hormones, rather than their level of concentration, that causes the shift in heart function. Estrogen and progesterone have opposing effects on the force of contraction of the heart, decreasing and increasing it, respectively. Estrogen also causes veins in the lower part of the body to become weak and lax, and so the blood pools in the lower body. This reduces venous return to the heart and thus decreases stroke volume[5]. This would explain the decrease in cardiac output and stroke volume during the early follicular phase. It’s possible that women who suffer from a worsening of symptoms between the mid-luteal phase and early follicular phase have a deficiency of progesterone, leaving their estrogen unopposed.

[1] Eduardo E. Benarroch. Postural Tachycardia Syndrome: A Heterogenous and Multifactorial Disorder. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547546/

[2] See study by Peggs KJ, et al. Gynecologic disorders and menstrual cycle lightheadedness in postural tachycardia syndrome. https://www.ncbi.nlm.nih.gov/m/pubmed/22721633/

[3] As per this image: https://canvas.instructure.com/courses/1021937/files/44221700/preview?verifier=7PIrkikO2kzCYfOtTpkAqz9W16xyexRYUiEXg2At

[4] Fu Q, et al. Menstrual cycle affects renal-adrenal and hemodynamic responses during prolonged standing in the postural orthostatic tachycardia syndrome. https://www.ncbi.nlm.nih.gov/pubmed/20479333

[5] Ray Peat. Heart and hormones. http://raypeat.com/articles/articles/heart-hormones.shtml

 

[SB4]

Interesting. I've recently been thinking on how estrogen and testosterone effects the male to female ratio in POTS/CFS and whether or not increasing testosterone would somewhat reverse this. I do seem to have some cortisol/estrogen symptoms in weight gain around mid section.

 

[Tenacity]

Interesting. I've recently been thinking on how estrogen and testosterone effects the male to female ratio in POTS/CFS and whether or not increasing testosterone would somewhat reverse this. I do seem to have some cortisol/estrogen symptoms in weight gain around mid section.

I saw a few reports on DINET of men who said they tested low serum testosterone, but given Peat's opinion on free testosterone it's nothing definitive. Personally I've tested low in vitamin D, which seems common, and I know that can affect androgenicity.

 

[SB4]

Well here are a few of my experiences that might correlate with testosterone and improvement. In december I experimented with low dose DHEA and PREG. The first couple of days my libido went from practically abscent to almost normal and I felt much better. Soon after however my libido dropped worse than before and I also had problems with insomnia. I have been trying to get the same effect since including going off it for 3 weeks and coming back at tiny doses of 0.25mg of Pansterone (DHEA+PREG) yet cannot recreate the effect. I think that the first dose upped my Test and my gonads responded with increased libido yet this increased energy only lasted a couple of days as it's kind of like whipping a tired horse, you get more energy short term but less medium term.

Last year I experimented with Icing testicles + sun light to improve test. Exactly the same thing happened, couple of days of increased libido and energy before crashing down worse than before.

In January I took a small amount of Forskolin as it is said to help digestion, I had much improved energy levels and libido the next day. Looked it up and it's know to increase test. Again same as before. Cannot replicate it.

I have plans to try vitamin K2 as well so we will see. I suspect that testosterone does help knock you out of autoimmunity / increase mitochondrial respiration / whatever; but oxidative stress/ nutrient dificencies /whatever is stopping our bodies getting into and staying into this state.

 

[opiath]

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.

 

[Tenacity]

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??

I don't think there's any way I can give an accurate number. I've never religiously eaten liver, because I don't particularly like it. As for dates and chocolate, the amounts in my diet were changing over time, but I rarely ate more than 200g of each on any given day. Dates were something I only started using within the past year or so.

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.

Do you have any references for these claims? How does estrogen and copper result in POTS - through what mechanism(s)? How can one find out if they are high in copper? Would zinc help?

Estrogen and copper in the CNS resulting in this disease is strange because it's not a disease of the central nervous system, but of the autonomic nervous system.

EDIT: This study here proposes that estrogen increases, rather than decreases as you suggested, deposition of copper into the tissue. https://www.ncbi.nlm.nih.gov/pubmed/25076894

Several others have mentioned that oral contraceptives also increase copper absorption.

I also found another paper that reported a worsening of Wilson's disease symptoms in a man after taking estrogen. Surely the opposite would happen if what you are saying is true?

 

[Tenacity]

@SB4 is low libido a symptom of your POTS? Did any other symptoms improve alongside libido when you did these experiments?

 

[SB4]

@SB4 is low libido a symptom of your POTS? Did any other symptoms improve alongside libido when you did these experiments?

I assume my lowered libido is part of my CFS/POTS.

Yes, I would feel more energy and my heart pounding, and digestion would be better. This is why I think there is something to the idea of Testosterone being protective of CFS/ME/POTS.

 

[Tenacity]

I assume my lowered libido is part of my CFS/POTS.

Yes, I would feel more energy and my heart pounding, and digestion would be better. This is why I think there is something to the idea of Testosterone being protective of CFS/ME/POTS.

There's a reason this might be true if estrogen is a causative component of the illness:

https://raypeatforum.com/community/...on-of-testosterone-and-other-androgens.22658/

Perhaps androgens can make up for a lack of progesterone in opposing estrogen?

Peat has also said British winters can lower a man's testosterone, perhaps because of the lack of light, or the lack of vitamin D. Have you had your vitamin D tested?

It's also possible that the extra testosterone you are producing is being converted to estrogen via aromatase.

 

[SB4]

@Tenacity Yes I did it just after summer last year (after spending all summer outside) and it was 49ng. So it wasn't in the deficient range but not as high as it should be for how much sun / D-lamps I get.

Yes that's what I'm assuming happened, regarding aromatase into estrogen. I also noticed my balls would retract upwards when I was experimenting with these things (whilst I was in the downswing of lowered libido). I assume this was estrogen but could be other reasons and I was taking very low doses. Far lower than most on here. I guess if you cells are very fatigued / high rT3 / etc from CFS then even a little extra will go down these pathways.

 

[Tenacity]

@Tenacity Yes I did it just after summer last year (after spending all summer outside) and it was 49ng. So it wasn't in the deficient range but not as high as it should be for how much sun / D-lamps I get.

Yes that's what I'm assuming happened, regarding aromatase into estrogen. I also noticed my balls would retract upwards when I was experimenting with these things (whilst I was in the downswing of lowered libido). I assume this was estrogen but could be other reasons and I was taking very low doses. Far lower than most on here. I guess if you cells are very fatigued / high rT3 / etc from CFS then even a little extra will go down these pathways.

Seems vitamin D isn't necessarily always a causative factor. I did find one study, though, wherein a woman with an alpha-hydroxylation defect, so that she couldn't turn D3 into calcitrol, recovered from her POTS completely once she started supplementing calcitrol. So I think vitamin D is definitely involved somehow. Renal hormones like angiotensin-II are commonly found elevated in POTS, and vitamin D is required for the proper functioning of the kidneys.

Seems like you have other co-morbid issues, given your CFS. Have you found anything that helped with that?

 

[SB4]

Seems vitamin D isn't necessarily always a causative factor. I did find one study, though, wherein a woman with an alpha-hydroxylation defect, so that she couldn't turn D3 into calcitrol, recovered from her POTS completely once she started supplementing calcitrol. So I think vitamin D is definitely involved somehow. Renal hormones like angiotensin-II are commonly found elevated in POTS, and vitamin D is required for the proper functioning of the kidneys.

Seems like you have other co-morbid issues, given your CFS. Have you found anything that helped with that?

That is interesting with D although isn't it the case that the vast majority of diseases are correlated with low D. A lack of it will probably causes more succeptibility to disease and you will probably need more / produce less when ill.

Yes although things that help my CFS are probably going to be differen't from those that help yours. I will list all the things that benefits me:
-Circadian Rhythm. Rising at sun rise, getting sun in eye, low light intensity after sun down + blocking blue light.
Helps: My sleep is better, my energy/awakeness/ACTH is better when I get a lot of bright (sun) light in day.
-Cold.
Helps: POTS.
-Red light.
Helps: Sleep, and energy levels.
-High fat, low carb, but keeping glycogen topped up.
Helps: Pots, heart pounding, digestion.
-Buteyko Breathing.
Helps: POTS. Heart pounding less, feel less stressed/sympathetic, less air starved. Before this I was taking deep breathes as my body felt oxygen deprived, no doubt from not enough blood getting to organs and that blood not carrying/releasing enough O2 due to lack of CO2 and too much methemoglobin. Now I take small, slow breathes.
-Transdermal Mg.
Helps: Heart pounding. Not sure if it's the Mg or the cold water it's in that helps. Probably both.
-Mirtazapine.
Helps: Ability to stand and general reduction of POTS. Has sides though.
-Inositol.
Helps: Sleep.
-Non flicker blue blocked computer monitor.
Helps: Viewing screen longer without having to look away due to eye strain. Also adjusting brightness with an app like Iris is good as this does not cause flicker.

There are other things that I'm messing around with that am fairly sure have helped but cannot say if they are worth it, Helminthic therapy, allithiamine, Li, grounding, etc.

 

[DesertRat]

Hi Tenancity
I had a pretty major case of POTS starting in 2000 with a CFS/ME relapse. A lot of things helped a little, but the only thing that really made a HUGE difference was going on a "mold sabbatical" which is an expression people doing "extreme mold avoidance" use. After two weeks camping in CO with almost all new stuff, my POTS diminished and exercise intolerance decreased. I came back to Ohio and found that living in a tent in the back yard and going in the house as little as possible really helped, but the cold wet weather soon made that impossible. So I drove west, camped in OK, NM, AZ, and CA, and within 3 months my POTS was totally gone. As this occurred years after onset, I was pretty convinced it was related to the lack of a certain unidentified environmental toxin. Interestingly enough, I found that every once in a while if I went into a building that smelled a bit off, or clearly smelled moldy, I'd start getting some podromal POTS symptoms (for me it is always an elevated heart rate combined with a puffy sensitivity in the soles of my feet). In any event, with a few exceptions, I've been able to avoid the POTS symptoms entirely by attending to reactions to environmental toxins. I also had to move out of my beautiful Ohio house --that's the sad part. Since summer is just around the corner, you could plan to do a 2 week camping trip, ideally with all new equipment, new clothes, and a borrowed car or rental car to avoid bringing anything contaminated by your current environment with you.

I know people on these boards think that getting your metabolism up will 'cure' this sensitivity. I can say that it has helped a bit, but it's like a band aid in that once a reaction starts, I can take salt and sugar to diminish it; but only keeping away from these triggers seems to prevent the onset completely. I think eventually the nervous system will 'forget' these established pathways and become more tolerant.

 

[Tenacity]

Hi Tenancity
I had a pretty major case of POTS starting in 2000 with a CFS/ME relapse. A lot of things helped a little, but the only thing that really made a HUGE difference was going on a "mold sabbatical" which is an expression people doing "extreme mold avoidance" use. After two weeks camping in CO with almost all new stuff, my POTS diminished and exercise intolerance decreased. I came back to Ohio and found that living in a tent in the back yard and going in the house as little as possible really helped, but the cold wet weather soon made that impossible. So I drove west, camped in OK, NM, AZ, and CA, and within 3 months my POTS was totally gone. As this occurred years after onset, I was pretty convinced it was related to the lack of a certain unidentified environmental toxin. Interestingly enough, I found that every once in a while if I went into a building that smelled a bit off, or clearly smelled moldy, I'd start getting some podromal POTS symptoms (for me it is always an elevated heart rate combined with a puffy sensitivity in the soles of my feet). In any event, with a few exceptions, I've been able to avoid the POTS symptoms entirely by attending to reactions to environmental toxins. I also had to move out of my beautiful Ohio house --that's the sad part. Since summer is just around the corner, you could plan to do a 2 week camping trip, ideally with all new equipment, new clothes, and a borrowed car or rental car to avoid bringing anything contaminated by your current environment with you.

I know people on these boards think that getting your metabolism up will 'cure' this sensitivity. I can say that it has helped a bit, but it's like a band aid in that once a reaction starts, I can take salt and sugar to diminish it; but only keeping away from these triggers seems to prevent the onset completely. I think eventually the nervous system will 'forget' these established pathways and become more tolerant.

Hi DesertRat.
That's an interesting account. Coincidentally, my room in my parent's house had been developing mould on the walls, and I later inspected under my bed that several of the clothes I had stored under there had become covered in mould spores. Before I knew I had POTS, and was suffering from pretty serious neurological symptoms, I had suspected the mould may be the cause, but even after cleaning my symptoms persisted.

The first and only time I've noticed my orthostatic tachycardia abating is when I stayed around my aunt's house, but it only happened one time and I've visited a few times since. No change around my girlfriend's place either.

What gender are you? And what symptoms accompanied your POTS? How do you keep the POTS away these days?

 

[SB4]

@DesertRat Interesting post. Is it possible that it wasn't just moving away from mold, but also being out doors in general? Perfect circadian rhythm, grounding, away from EMFs, lots of natural light...

 

[Tenacity]

@DesertRat Interesting post. Is it possible that it wasn't just moving away from mold, but also being out doors in general? Perfect circadian rhythm, grounding, away from EMFs, lots of natural light...

I did find one report on DINET of someone claiming that grounding also alleviated her POTS, so perhaps there's something to that as well.

 

[achar45]

Do you know where your blood pressure is at Tenacity? Do you have any hypermobile joints?

 

[Tenacity]

Do you know where your blood pressure is at Tenacity? Do you have any hypermobile joints?

I don't. When I saw my GP, they took it when I was sitting down. I asked how it was and they just said 'okay', but didn't tell me the value. Unfortunately I was too wired to think to ask them what the measurement was. A standing measurement would be more interesting. I'll try and find out at my first upcoming cardiology appointment.

Other than hitchhiker's thumbs (and a mild example at that), I don't appear to have any hyper-mobility. I'm actually not very limber at all. I don't think I have Ehlers-Danlos Syndrome, if that's why you ask.

 

[achar45]

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.