I live my life horizontally thanks to a condition called POTS (Postural Orthostatic Tachycardia Syndrome). It's poorly understood, often misdiagnosed and can be devastating to quality of life.
I have POTS, too! I've had the symptoms for years, maybe almost a decade. It wasn't until meeting a new GP focused on chronic conditions post-pandemic that I got a diagnosis, and I think a lot of specialists would possibly write me off for not having gone to them. Because it's such an under-diagnosed and under-discussed condition, it's hard to believe that I actually have it some days (until I stand up too fast, try to take a walk, go up a few flights of stairs...). Medical fatphobia also seriously complicates POTS treatment and diagnosis, as it's easy to write off most of the symptoms as "being out of shape," to the point where there's still the persistent myth among doctors that POTS is caused by "deconditioning."
It's important to note, though, that only about 30-40% of POTS patients actually experience syncope (fainting). It's clearly a severe symptom for you, which is so important to discuss! However, I don't want people reading to think that anyone needs to faint in order to have the condition. Sometimes, fainting becomes a gatekeeping symptom in the POTS community and among doctors, so I think it's important to mention.
Yes that's a very important thing to note! I will make sure to call that out more clearly in my next article - as it'll be a deeper dive into the various symptoms and treatment options.
The deconditioning myth is awful. So many people who develop POTS were incredibly fit when it hit them. I also wish doctors would stop making judgements about people's size. I experienced the opposite - where I was told my fainting and low blood pressure was from being too thin (and once - from being a redhead).
I wish doctors would just say they don't know. I would respect that far more than blaming very serious symptoms on weight, gender, hair colour etc.
Thank you for sharing your story - and I'm glad you were able to get a diagnosis!
It happens with so many things. People still think they can blame diabetes on obesity, even though type 1 diabetes is autoimmune, type 2 diabetes is genetic, and gestational diabetes is due to the fetus trying to extract more sugar from the mother.
I wonder, too, how many men have fibromyalgia. Supposedly 90% of patients are women, but how much of that is just because doctors don't expect to find it in men?
Yes I wonder the same thing about men with POTS and EDS. It skews to females but I do wonder if men are less likely to seek help for these issues because they’ve been taught to ‘tough it out’? Add to that the fact that doctors are trained that they’re uncommon in men - and it’s likely harder to find?
I have to tell you how fortunate I feel about finding you. You’ve helped me so much. I actually have a medical appointment in an hour and this article even helped me with that! I just wanted to say thank you, I’m grateful to you, and I look forward to reading your next essay in the series.
Reda - thank you so much. This message made me smile and I really needed it today (bad symptom day - I hate the October slide). I’ve been dealing with POTS for soooo long…. and I’m happy to finally be in a place where I can write about it and share my knowledge with other people.
I was diagnosed with Dysautonomia accompanied by MCAS, 10 months ago. Still on a mission in finding the right dose of meds, supplements and foods I can tolerate, Oh the joys of trying to figure things out!
I can so relate with you... the shower. Its in no way enjoyable as it once was. I dread them. The nausea is insane at times. My husband bought a cool step stool for me to sit on in the shower. (The shower chairs are too big for it... sigh.)
Thank you for this amazing post. So happy I stumbled across your account. Hugs and love from Australia. 🤗💗 🇦🇺
Hey Cheryl! I’m glad you stumbled upon me too! It is such an adventure finding what works and what doesn’t… I’ve had my diagnosis for years and I’m still figuring it out!
I’m glad that you’re embracing accommodations like a stool for the shower - it’s such an important and helpful thing to do. Hugs and love back from Canada!
Friendly reminder that POTS is only *one* of many (15?) kinds of dysautonomia! Thought I should put that out there for Dysautonomia Awareness Month! POTS has definitely been the buzz in recent years though, especially with long Covid!
Mine is neurogenic, which is another common umbrella of autonomic dysfunctions. I think the most common is probably Diabetic cardiac autonomic neuropathy? Probably? I use diabetic CAN to talk about my symptoms with new clinicians just because it’s more familiar and better researched than autonomic disorders associated with other diseases.
Yes absolutely! Thank you for reminding us. I did link to Dysautonomia International so hopefully people with other types can get more information as needed - I have NCS now and will write about that in the future - but wanted to start with POTS as it’s the one I had first!
Totally! I think it’s completely legit to start with POTS, for about a hundred reasons! A lot of the neurogenic ones are pretty squirrelly, and not suited to a single post!
Yeah I was diagnosed originally with posts and then NCS and can honestly say I’m still parsing through all the information. It’s a LOT and I didn’t get much guidance from my doctors either (beyond try not to faint in any dangerous places lol)
AND, in our chronically stressed, burned out modern era, disordered autonomic responses are almost inevitable!
For example, an encounter in my day may “remind” if not trigger a traumatic memory in my subconscious. My autonomic reaction may be to feel gassy and bloated for what my “rational” mind thinks is “no reason.”
Our modern brains get pretty mixed up about the “fight or flight” response emotionally IN ADDITION to the physical causes.
I wrote a whole post about this that I never got the nerve to publish. Lol
Yes! Me too! So many GI symptoms in response to something my nervous system has decided is a threat - and my brain has no idea. It’s infinitely frustrating.
I don’t experience palpitations I can feel, though they were picked up when I had a stress test. When my HR gets over 130 while walking slowly I get fatigued and foggy, nauseous. Like Broadwaybabto, I will ‘choose’ to sit on the street or the floor of a train carriage rather than fall down. Once I was diagnosed with ME/CFS and saw a rheumatologist he did a 2 min stand test and diagnosed me based on that, and the detailed history he takes (3 multi page questionnaires plus your doctor’s files, blood work etc.)
Mind you, I’d noticed for years that in warm weather I had to drink mineral water alternated with plain water or I ‘felt off’ and would get a bit puffy. Now I take oral rehydration solution daily.
ME/CFS pacing is helpful for POTS, one webinar I watched the speaker said, “Don’t stand when you can sit. Don’t sit when you can recline. Don’t recline when you can lie down.” More and more I follow that advice.
Even with comparatively mild POTS, its wild how it impacts nearly everything. Who knew washing your own hair was such an extreme sport?
My hair is SO long (I really need to cut it) and hair washes are ridiculous. It’s a race to ensure all the shampoo gets rinsed out before I collapse lol.
I would almost add an extra item to that list - why lay down flat when you can lay with your legs up the wall! lol
Yes! My hair was super long (for me) post covid but was triggering migraines due to allodynia and occipital neuralgia. Neurologist suggested it was too heavy. So now its a bit longer than shoulder length.
My doctors haven’t seen my hair in years lol. My MCAS got so bad that my hair is always covered in a buff. I make it fun. I’ve got a pineapple one and a pink flamingo one… I’m sure I look ridiculous lol. It’s long enough to be tied up in a messy bun with no effort and then I just throw a buff on top. But washing it sucks a lot.
I can get out so a local salon washes mine for me. Even using spoons to get there, its worth it. Mind you, I wear a hat most of the time if its cooler than 17’c, to prevent wind chill migraines. So my hair is seldom seen too.
I love this! Also felt less alone when you mentioned you got a grade 3 wrist sprain from falling and it took nearly a year to heal. I did too, last November, and I’d say, it’s just starting to heal now - as in I can finally put weight on it and not notice it much. However I’m still dealing with an AC joint sprain from that same fall in my shoulder 11 months later that’s still quite painful 🥲 wearing braces really does help. I still wear my wrist brace when I sleep too even if it’s better, in case I move on it or whatever.
I’m glad I helped you feel less alone! I was shocked at how bad the sprain was - I was sure I broke it because it hurt so much. Given I have EDS I frequently sleep in wrist braces because I also have carpal tunnel - but since the sprain the brace is NEVER off at night. What fun it is to fall down all the time eh?
Oh man, I have similar autonomic nervous system issues. I'm pretty good at avoiding fainting - but it involves lots of laying down and for me, hacking my low blood pressure with salt. I just lay down and eat cheese snacks - not doctor approved haha. Plus my med has a side effect of dizziness so DOUBLE WHAMMY. Docs just tell me to slow down, but I'm like - I've got a squirrelly two year old! woof.
Haha I love it. I used to eat mayo BY THE SPOONFUL. Seriously I would sit in bed and shovel mayo into my mouth. I can’t tolerate it anymore because of my MCAS - but it was surprisingly effective and delicious!
Do you know if your autonomic issues are secondary to the disease you have? (I’m so sorry I’m blanking on the name). I’m glad you’ve figured out how to avoid fainting - that’s a huge part of the battle!
Oh yeah I have tricks. And I’ve been lucky I haven’t fainted. Almost dying a few times is not great on the system- it threw everything for a loop. Plus kidneys control the blood pressure and mine were damaged. Honestly I’m fortunate to not be worse. But it’s definitely tricky with a kiddo.
That makes sense! They can’t figure out WHY my blood pressure is so dreadfully low - but they’re constantly checking my kidneys because of it (and the huge amounts of sodium and fluid I take in - my kidneys work hard)
I can’t imagine “slowing down” with a kiddo - it wouldn’t be easy!
Ha! I used to lick Vegemite off a teaspoon because I was too nauseous to eat it on toast with butter. Its not something you’d do unless your body was crying out for salt. I don’t faint in the absence of severe infection and a couple of mega migraines, but its hard to do anything when you aren’t getting enough oxygen at the cellular level.
Thank you for explaining all this. I'm sorry for all you have to deal with, but I appreciate being able to understand it better. It's important to have visibility on these things, especially when they're so poorly known and addressed. I think this post could help a lot of people.
I don't have POTS, so it's good to know more about it. But some of it echoes with my own experiences with fibromyalgia, both in terms of the effects (having to mostly lie down, not being able to sit up for at least an hour after waking up, being prone to sudden woozy spells, etc.) and just trying to deal with a medical community that doesn't know about your condition (doctors who don't believe or understand you, doctors who do know what it is that you've got but still don't know how to help).
Oddly, though, this post reminds me of one of my favorite bits of trivia:
Veins have valves in them. Valves are necessary to prevent back flow of blood. They allow the blood to flow only in the correct direction, and close up when the blood tries to push the wrong way. Arteries don't have valves. You've got the pressure from the heart pushing the blood, so you don't have to worry about back flow. Valves would only be an obstacle that slows down blood flow, making it harder to reach the extremities.
But there is one exception. One place in all the world you'll find arteries with valves in them: A giraffe's neck. The neck is so long that centripetal force becomes a major problem. Giraffes, like most land animals, drink from rivers, which means they have to bend their necks all the way down to below ground level in order to get the water. When they lift their heads back up, swinging them at such a long distance, there's a lot of pressure. Without valves, even the blood in the arteries would go rushing out of the giraffe's head, causing it to pass out. At which point it would try to stand up again, and all the blood would go rushing out again, and it would pass out again...
It was a fascinating hypothetical when I learned about it in college. I asked my beloved physics professor (who loved to give us challenging problems and walk us through the complex multivariable calculus needed to solve them) if we could do that as an example in class, and he said the math for the fluid dynamics was way beyond our level.
But here I am seeing the situation in a whole new light now that it's no longer a hypothetical involving a non-existent valveless giraffe.
That’s fascinating - I never thought about giraffes that way!
I appreciate you pointing out the need for visibility - with these invisible illnesses it’s so important that we clearly talk about our struggles so people feel less alone. I also hope that if healthcare workers read it they may have a deeper understanding of what we go through - and be able to treat us with more empathy and compassion.
Visibility is so important. So people don't feel alone. So that if they recognize their symptoms they know what it could mean. So that caregivers know it's a real thing. So they understand more of what patients are dealing with outside the exam room.
Exactly! I think we need more visibility from the patient perspective - because what is taught in textbooks does not always align. If healthcare workers can picture what we go through - it could lead to better care.
Just teaching doctors to believe patients (equally, regardless of their demographics) rather than scoffing at them would be a big step forward in quality of care. Doctor, I respect that you have years of training. That's why I'm here. But I've lived in this body my entire life, and that very specific expertise counts, too.
Paul-Gabriel I’m curious how you know you don’t have POTS? I have both fibro and POTS, in my case the POTS was diagnosed after a 2 min stand test when I saw a rheumatologist after being diagnosed with ME/CFS but I recently read that there are better tests, and the tilt table test is not especially sensitive. Cort Johnson of Health Rising featured the top POTS doctor/researcher talking about it this past week.
Oof. Fibro + POTS is a heck of a combination. I haven't done a tilt table. But I've had a thorough cardio workup. My resting heartrate is a little on the high side (not surprising, really), but it's steady. I'm exhausted all the time from multiple sleeping disorders, so it takes an hour before I'm awake enough to move. But I've never gotten woozy or heart palpitations just from sitting or standing. I get woozy from fatigue, but that's another matter. And the heart palpitations I used to experience were actually eventually traced back to GERD. (Turns out, the heart is really close to the esophagus, so if esophageal nerves start going wild due to reflux - even if you don't feel pain from it - they can set off the heart.) We changed my stomach meds, and it cleared right up. So, basically, AFAIK, I don't have any POTS symptoms or generally any symptoms not explained by my current diagnoses. I really don't think I fit the profile.
Resting heart rate isn't really important in POTS - it's how much the heart rate increases upon standing. If it's more than 30bpm that's indicative of POTS. You wouldn't necessarily feel a lot from a 30 beat increase (mine goes up over 100 and I definitely feel that). Might be worth doing a stand test at home just to rule out?
I have a "smart" watch that tracks my heart rate. It's not all that reliable but I think it would notice a spike like that. I've also had an actigraphy test where I wore a medical grade smart watch for a week, and they didn't notice anything, either. I'll keep a stand test in mind, but my blood pressure monitor also seems inaccurate (even under a nurse's supervision when I was undergoing at-home IVIG). There's also the fact that fibromyalgia would muddy the waters. Standing up triggers pain spikes across my body as weight shifts onto my joints and the muscles across my body stretch and tighten to balance. The pain alone could trigger a heart rate and blood pressure spike.
Sounds like you’ve got your bases well covered then! It’s just good to be aware of it since it’s missed so often. I can’t even tell you how many holter monitors I did where I was told everything was “fine” when it clearly showed POTS. Unless they thought I worked out 100 times a day!
I've got GERD from my MCAS and it's awful - it's generally one of the first signs that something is triggering me (and this is in spite of H2 blockers). I worry so much about the state of my esophagus because that just seems to be where my mast cells like to party (and gastric cancers run in my family - so not awesome)
My twin had esophageal cancer. The only good thing about GERD is that they know now to take it seriously unlike in the past. Monitoring etc is so much better esp. where a family history exists. We didn’t have a family history so stage 4 adenocarcinoma in a 44yo was a bit of a surprise. Here’s hoping for fewer triggers for you ❤️🩹
My Mom was 47 with stage 4 pancreatic cancer - also a huge surprise. I’ve been waiting on endoscopy for years - they keep cancelling either due to Covid outbreaks and/or concerns that my heart can’t handle the sedation. Which seems absurd as they manage in elderly people with low blood pressure all the time- but it’s where I’m at. Sigh.
The GERD isn't too bad, usually. I just had to switch meds because my body had developed a tolerance to the old one. I actually only have GERD because of my sleep apnea. But, really, all my issues start with autoimmune issues and end with reduced sleep quality. Started when I was a little kid and just snowballed from there.
Thanks for sharing your experiences with this condition and spreading optimism for others. That sounds like an awful lot to have to manage. Best wishes and looking forward to the next in the series.
Thank you. It can be a lot to manage but patients can improve their quality of life by learning about the condition and making adjustments and accommodations. Hopefully my tips can help others have an easier go of things!
I hope this is helpful for your daughter! The third article will be a much deeper dive into accommodations, lifestyle changes and treatment options. There are so many things we can do to lessen symptoms and improve quality of life - but it can be overwhelming at first.
I'm going to try and divide it into digestible chunks so that people can take it one step at at time and hopefully have an easier adjustment than I did.
I have POTS, too! I've had the symptoms for years, maybe almost a decade. It wasn't until meeting a new GP focused on chronic conditions post-pandemic that I got a diagnosis, and I think a lot of specialists would possibly write me off for not having gone to them. Because it's such an under-diagnosed and under-discussed condition, it's hard to believe that I actually have it some days (until I stand up too fast, try to take a walk, go up a few flights of stairs...). Medical fatphobia also seriously complicates POTS treatment and diagnosis, as it's easy to write off most of the symptoms as "being out of shape," to the point where there's still the persistent myth among doctors that POTS is caused by "deconditioning."
It's important to note, though, that only about 30-40% of POTS patients actually experience syncope (fainting). It's clearly a severe symptom for you, which is so important to discuss! However, I don't want people reading to think that anyone needs to faint in order to have the condition. Sometimes, fainting becomes a gatekeeping symptom in the POTS community and among doctors, so I think it's important to mention.
Yes that's a very important thing to note! I will make sure to call that out more clearly in my next article - as it'll be a deeper dive into the various symptoms and treatment options.
The deconditioning myth is awful. So many people who develop POTS were incredibly fit when it hit them. I also wish doctors would stop making judgements about people's size. I experienced the opposite - where I was told my fainting and low blood pressure was from being too thin (and once - from being a redhead).
I wish doctors would just say they don't know. I would respect that far more than blaming very serious symptoms on weight, gender, hair colour etc.
Thank you for sharing your story - and I'm glad you were able to get a diagnosis!
It happens with so many things. People still think they can blame diabetes on obesity, even though type 1 diabetes is autoimmune, type 2 diabetes is genetic, and gestational diabetes is due to the fetus trying to extract more sugar from the mother.
I wonder, too, how many men have fibromyalgia. Supposedly 90% of patients are women, but how much of that is just because doctors don't expect to find it in men?
Yes I wonder the same thing about men with POTS and EDS. It skews to females but I do wonder if men are less likely to seek help for these issues because they’ve been taught to ‘tough it out’? Add to that the fact that doctors are trained that they’re uncommon in men - and it’s likely harder to find?
I have to tell you how fortunate I feel about finding you. You’ve helped me so much. I actually have a medical appointment in an hour and this article even helped me with that! I just wanted to say thank you, I’m grateful to you, and I look forward to reading your next essay in the series.
Reda - thank you so much. This message made me smile and I really needed it today (bad symptom day - I hate the October slide). I’ve been dealing with POTS for soooo long…. and I’m happy to finally be in a place where I can write about it and share my knowledge with other people.
I was diagnosed with Dysautonomia accompanied by MCAS, 10 months ago. Still on a mission in finding the right dose of meds, supplements and foods I can tolerate, Oh the joys of trying to figure things out!
I can so relate with you... the shower. Its in no way enjoyable as it once was. I dread them. The nausea is insane at times. My husband bought a cool step stool for me to sit on in the shower. (The shower chairs are too big for it... sigh.)
Thank you for this amazing post. So happy I stumbled across your account. Hugs and love from Australia. 🤗💗 🇦🇺
Hey Cheryl! I’m glad you stumbled upon me too! It is such an adventure finding what works and what doesn’t… I’ve had my diagnosis for years and I’m still figuring it out!
I’m glad that you’re embracing accommodations like a stool for the shower - it’s such an important and helpful thing to do. Hugs and love back from Canada!
Friendly reminder that POTS is only *one* of many (15?) kinds of dysautonomia! Thought I should put that out there for Dysautonomia Awareness Month! POTS has definitely been the buzz in recent years though, especially with long Covid!
Mine is neurogenic, which is another common umbrella of autonomic dysfunctions. I think the most common is probably Diabetic cardiac autonomic neuropathy? Probably? I use diabetic CAN to talk about my symptoms with new clinicians just because it’s more familiar and better researched than autonomic disorders associated with other diseases.
Yes absolutely! Thank you for reminding us. I did link to Dysautonomia International so hopefully people with other types can get more information as needed - I have NCS now and will write about that in the future - but wanted to start with POTS as it’s the one I had first!
Totally! I think it’s completely legit to start with POTS, for about a hundred reasons! A lot of the neurogenic ones are pretty squirrelly, and not suited to a single post!
Yeah I was diagnosed originally with posts and then NCS and can honestly say I’m still parsing through all the information. It’s a LOT and I didn’t get much guidance from my doctors either (beyond try not to faint in any dangerous places lol)
AND, in our chronically stressed, burned out modern era, disordered autonomic responses are almost inevitable!
For example, an encounter in my day may “remind” if not trigger a traumatic memory in my subconscious. My autonomic reaction may be to feel gassy and bloated for what my “rational” mind thinks is “no reason.”
Our modern brains get pretty mixed up about the “fight or flight” response emotionally IN ADDITION to the physical causes.
I wrote a whole post about this that I never got the nerve to publish. Lol
Yes! Me too! So many GI symptoms in response to something my nervous system has decided is a threat - and my brain has no idea. It’s infinitely frustrating.
I don’t experience palpitations I can feel, though they were picked up when I had a stress test. When my HR gets over 130 while walking slowly I get fatigued and foggy, nauseous. Like Broadwaybabto, I will ‘choose’ to sit on the street or the floor of a train carriage rather than fall down. Once I was diagnosed with ME/CFS and saw a rheumatologist he did a 2 min stand test and diagnosed me based on that, and the detailed history he takes (3 multi page questionnaires plus your doctor’s files, blood work etc.)
Mind you, I’d noticed for years that in warm weather I had to drink mineral water alternated with plain water or I ‘felt off’ and would get a bit puffy. Now I take oral rehydration solution daily.
ME/CFS pacing is helpful for POTS, one webinar I watched the speaker said, “Don’t stand when you can sit. Don’t sit when you can recline. Don’t recline when you can lie down.” More and more I follow that advice.
Even with comparatively mild POTS, its wild how it impacts nearly everything. Who knew washing your own hair was such an extreme sport?
My hair is SO long (I really need to cut it) and hair washes are ridiculous. It’s a race to ensure all the shampoo gets rinsed out before I collapse lol.
I would almost add an extra item to that list - why lay down flat when you can lay with your legs up the wall! lol
Yes! My hair was super long (for me) post covid but was triggering migraines due to allodynia and occipital neuralgia. Neurologist suggested it was too heavy. So now its a bit longer than shoulder length.
My doctors haven’t seen my hair in years lol. My MCAS got so bad that my hair is always covered in a buff. I make it fun. I’ve got a pineapple one and a pink flamingo one… I’m sure I look ridiculous lol. It’s long enough to be tied up in a messy bun with no effort and then I just throw a buff on top. But washing it sucks a lot.
I can get out so a local salon washes mine for me. Even using spoons to get there, its worth it. Mind you, I wear a hat most of the time if its cooler than 17’c, to prevent wind chill migraines. So my hair is seldom seen too.
That was my hack for years before my MCAS became too severe to tolerate being at the salon. It was a fabulous way to save spoons!
I love this! Also felt less alone when you mentioned you got a grade 3 wrist sprain from falling and it took nearly a year to heal. I did too, last November, and I’d say, it’s just starting to heal now - as in I can finally put weight on it and not notice it much. However I’m still dealing with an AC joint sprain from that same fall in my shoulder 11 months later that’s still quite painful 🥲 wearing braces really does help. I still wear my wrist brace when I sleep too even if it’s better, in case I move on it or whatever.
I’m glad I helped you feel less alone! I was shocked at how bad the sprain was - I was sure I broke it because it hurt so much. Given I have EDS I frequently sleep in wrist braces because I also have carpal tunnel - but since the sprain the brace is NEVER off at night. What fun it is to fall down all the time eh?
Oh man, I have similar autonomic nervous system issues. I'm pretty good at avoiding fainting - but it involves lots of laying down and for me, hacking my low blood pressure with salt. I just lay down and eat cheese snacks - not doctor approved haha. Plus my med has a side effect of dizziness so DOUBLE WHAMMY. Docs just tell me to slow down, but I'm like - I've got a squirrelly two year old! woof.
Haha I love it. I used to eat mayo BY THE SPOONFUL. Seriously I would sit in bed and shovel mayo into my mouth. I can’t tolerate it anymore because of my MCAS - but it was surprisingly effective and delicious!
Do you know if your autonomic issues are secondary to the disease you have? (I’m so sorry I’m blanking on the name). I’m glad you’ve figured out how to avoid fainting - that’s a huge part of the battle!
Oh yeah I have tricks. And I’ve been lucky I haven’t fainted. Almost dying a few times is not great on the system- it threw everything for a loop. Plus kidneys control the blood pressure and mine were damaged. Honestly I’m fortunate to not be worse. But it’s definitely tricky with a kiddo.
That makes sense! They can’t figure out WHY my blood pressure is so dreadfully low - but they’re constantly checking my kidneys because of it (and the huge amounts of sodium and fluid I take in - my kidneys work hard)
I can’t imagine “slowing down” with a kiddo - it wouldn’t be easy!
Ha! I used to lick Vegemite off a teaspoon because I was too nauseous to eat it on toast with butter. Its not something you’d do unless your body was crying out for salt. I don’t faint in the absence of severe infection and a couple of mega migraines, but its hard to do anything when you aren’t getting enough oxygen at the cellular level.
Thank you for explaining all this. I'm sorry for all you have to deal with, but I appreciate being able to understand it better. It's important to have visibility on these things, especially when they're so poorly known and addressed. I think this post could help a lot of people.
I don't have POTS, so it's good to know more about it. But some of it echoes with my own experiences with fibromyalgia, both in terms of the effects (having to mostly lie down, not being able to sit up for at least an hour after waking up, being prone to sudden woozy spells, etc.) and just trying to deal with a medical community that doesn't know about your condition (doctors who don't believe or understand you, doctors who do know what it is that you've got but still don't know how to help).
Oddly, though, this post reminds me of one of my favorite bits of trivia:
Veins have valves in them. Valves are necessary to prevent back flow of blood. They allow the blood to flow only in the correct direction, and close up when the blood tries to push the wrong way. Arteries don't have valves. You've got the pressure from the heart pushing the blood, so you don't have to worry about back flow. Valves would only be an obstacle that slows down blood flow, making it harder to reach the extremities.
But there is one exception. One place in all the world you'll find arteries with valves in them: A giraffe's neck. The neck is so long that centripetal force becomes a major problem. Giraffes, like most land animals, drink from rivers, which means they have to bend their necks all the way down to below ground level in order to get the water. When they lift their heads back up, swinging them at such a long distance, there's a lot of pressure. Without valves, even the blood in the arteries would go rushing out of the giraffe's head, causing it to pass out. At which point it would try to stand up again, and all the blood would go rushing out again, and it would pass out again...
It was a fascinating hypothetical when I learned about it in college. I asked my beloved physics professor (who loved to give us challenging problems and walk us through the complex multivariable calculus needed to solve them) if we could do that as an example in class, and he said the math for the fluid dynamics was way beyond our level.
But here I am seeing the situation in a whole new light now that it's no longer a hypothetical involving a non-existent valveless giraffe.
That’s fascinating - I never thought about giraffes that way!
I appreciate you pointing out the need for visibility - with these invisible illnesses it’s so important that we clearly talk about our struggles so people feel less alone. I also hope that if healthcare workers read it they may have a deeper understanding of what we go through - and be able to treat us with more empathy and compassion.
Visibility is so important. So people don't feel alone. So that if they recognize their symptoms they know what it could mean. So that caregivers know it's a real thing. So they understand more of what patients are dealing with outside the exam room.
Exactly! I think we need more visibility from the patient perspective - because what is taught in textbooks does not always align. If healthcare workers can picture what we go through - it could lead to better care.
Just teaching doctors to believe patients (equally, regardless of their demographics) rather than scoffing at them would be a big step forward in quality of care. Doctor, I respect that you have years of training. That's why I'm here. But I've lived in this body my entire life, and that very specific expertise counts, too.
Paul-Gabriel I’m curious how you know you don’t have POTS? I have both fibro and POTS, in my case the POTS was diagnosed after a 2 min stand test when I saw a rheumatologist after being diagnosed with ME/CFS but I recently read that there are better tests, and the tilt table test is not especially sensitive. Cort Johnson of Health Rising featured the top POTS doctor/researcher talking about it this past week.
Oof. Fibro + POTS is a heck of a combination. I haven't done a tilt table. But I've had a thorough cardio workup. My resting heartrate is a little on the high side (not surprising, really), but it's steady. I'm exhausted all the time from multiple sleeping disorders, so it takes an hour before I'm awake enough to move. But I've never gotten woozy or heart palpitations just from sitting or standing. I get woozy from fatigue, but that's another matter. And the heart palpitations I used to experience were actually eventually traced back to GERD. (Turns out, the heart is really close to the esophagus, so if esophageal nerves start going wild due to reflux - even if you don't feel pain from it - they can set off the heart.) We changed my stomach meds, and it cleared right up. So, basically, AFAIK, I don't have any POTS symptoms or generally any symptoms not explained by my current diagnoses. I really don't think I fit the profile.
Resting heart rate isn't really important in POTS - it's how much the heart rate increases upon standing. If it's more than 30bpm that's indicative of POTS. You wouldn't necessarily feel a lot from a 30 beat increase (mine goes up over 100 and I definitely feel that). Might be worth doing a stand test at home just to rule out?
I have a "smart" watch that tracks my heart rate. It's not all that reliable but I think it would notice a spike like that. I've also had an actigraphy test where I wore a medical grade smart watch for a week, and they didn't notice anything, either. I'll keep a stand test in mind, but my blood pressure monitor also seems inaccurate (even under a nurse's supervision when I was undergoing at-home IVIG). There's also the fact that fibromyalgia would muddy the waters. Standing up triggers pain spikes across my body as weight shifts onto my joints and the muscles across my body stretch and tighten to balance. The pain alone could trigger a heart rate and blood pressure spike.
Sounds like you’ve got your bases well covered then! It’s just good to be aware of it since it’s missed so often. I can’t even tell you how many holter monitors I did where I was told everything was “fine” when it clearly showed POTS. Unless they thought I worked out 100 times a day!
Its interesting how, after a while, we all have multiple illnesses. Sorry to hear your GERD is that bad (not that its ever good, exactly).
I've got GERD from my MCAS and it's awful - it's generally one of the first signs that something is triggering me (and this is in spite of H2 blockers). I worry so much about the state of my esophagus because that just seems to be where my mast cells like to party (and gastric cancers run in my family - so not awesome)
My twin had esophageal cancer. The only good thing about GERD is that they know now to take it seriously unlike in the past. Monitoring etc is so much better esp. where a family history exists. We didn’t have a family history so stage 4 adenocarcinoma in a 44yo was a bit of a surprise. Here’s hoping for fewer triggers for you ❤️🩹
My Mom was 47 with stage 4 pancreatic cancer - also a huge surprise. I’ve been waiting on endoscopy for years - they keep cancelling either due to Covid outbreaks and/or concerns that my heart can’t handle the sedation. Which seems absurd as they manage in elderly people with low blood pressure all the time- but it’s where I’m at. Sigh.
The GERD isn't too bad, usually. I just had to switch meds because my body had developed a tolerance to the old one. I actually only have GERD because of my sleep apnea. But, really, all my issues start with autoimmune issues and end with reduced sleep quality. Started when I was a little kid and just snowballed from there.
Glad there was a solution that worked for you.
Thanks for sharing your experiences with this condition and spreading optimism for others. That sounds like an awful lot to have to manage. Best wishes and looking forward to the next in the series.
Thank you. It can be a lot to manage but patients can improve their quality of life by learning about the condition and making adjustments and accommodations. Hopefully my tips can help others have an easier go of things!
Thanks, important info, still learning more about my daughter's POTS.
I hope this is helpful for your daughter! The third article will be a much deeper dive into accommodations, lifestyle changes and treatment options. There are so many things we can do to lessen symptoms and improve quality of life - but it can be overwhelming at first.
I'm going to try and divide it into digestible chunks so that people can take it one step at at time and hopefully have an easier adjustment than I did.
Thank you!
Thank you DG - sounds like an extremely challenging condition you live with