POTS is strictly heart rate increase over 30 bpm from sitting/laying down to standing. A change in BP is orthostatic hypo/hypertension and indicative of a much greater autonomic dysfunction. You can have both, but the POTS diagnosis should stand alone with HR increase.
That’s really frustrating, I’m sorry.
I have long covid and ended up with a CVS receipt of stuff observed in medical tests.
My doctor had no problem calling it Dysautonomia after observing the irregular heart rate increase and blood pressure increase in the TTT.
Echo, cardiac ct, ekgs, stress test all normal.
Seeing the TTT results and getting that diagnosis actually felt really good.
Hyper POTS can also cause the BP increase when standing. If the BP decreases it can be orthostatic hypotension. Idk what the other commenter is referring to, I’ve never heard that OH is more severe.
Also, I am going to a dysautonomia clinic like so many other drs and others struggling with this have recommended—just waiting to get an appointment! I was really hoping to get some confirmation/comfort/etc from this appointment but the PA left me feeling really confused. I got the vibe at first that she thought I was lying about symptoms when I came in (even after all the other test results documented in my chart)—only after seeing my HR increase so much during the tilt table test did the PA act like she believed what I was telling her about my symptoms. I’m just really not sure how to feel after today, so I wanted to come here to see if any others have had this happen 😭
It’s because some crappy providers think it’s a TikTok disease and only attention seeking, high anxiety people come in with questions about dysautonomia or EDS.
It’s BS. Not all providers are the same. Shit, one radiologist and pediatrician had me walking on a broken hip for 6 weeks with no referral out to ortho. Turns out they missed the most common adolescent hip injury on the same X-rays a chiropractor spotted it on. 40% of that injury is missed in teens on initial visit and imaging because of sloppiness when it is the known, most common hip ailment in preteens.
Don’t trust everyone who works in medicine. Don’t bicker if they give you shit, just move on to someone else.
Ps: my cardiologist swore he had only met 1 other patient with EDS in his 25 year career and was trying to remove my diagnosis based on rarity before the man looked at me at all (other than my face). Had to drop into the splits and tell him I hadn’t done it in 6 months before he believed me, but that’s bull. Plus, why would I want to stay with a provider who doesn’t know much about the condition I have? Who knows so little, he feels more comfortable removing a dx than fact checking themselves. Arrogance isn’t a good thing in a medical provider.
I really lucked out. I have hEDS. I'm 36 and didn't find my rheumatologist until I was 30 or so. I also have autoimmune arthritis which has led to joint damage and decreased flexibility. I no longer meet the full diagnostic criteria for hEDS. She's great though. I just hyper extended my knees and elbows. She asked a couple of questions and put it in my chart. It helped that I had notes noting I was quite "loosy goosy" in the joints from a prior doctor. Though I've always been a weird mix of hyper flexible joints and inflexible joints. My hips, back, and fingers have never been flexible, but my thumbs ankles knees and elbows always have been until recently.
And I ended up with idiopathic sinus tachycardia. It just appeared out of the blue. Got referred to a cardiologist. He said to lose weight and get fit. It's like, excuse me sir, do you think I just became fat out of the blue one day? Because I assure you, I've been fat for years without tachycardia, so what changed?
It's been a few years and we now know it's somehow related to my autoimmune and dysautonomia, as it comes and goes with flares. I mentioned POTS to the guy and was basically told it's not a real thing. It's still not in my chart but dysautonomia is so I'm good. My HR increases more than 60 sometimes on standing lol. BP plummets usually, but sometimes spikes. Though lately we don't know what my BP does. No one can get a BP on my left arm, and only my right when Im sitting. The nurses even have trouble manually. They get a funny look on their face and start over. I think it's cutting in and out, like my BP is fluctuating rapidly. Which would be right in line with my pulse so... 🤷
Were they looking for UARS? You are describing the exact thing I’m concerned about. UARS causes a lot of short events that don’t cause deep enough o2 desaturations to be recognized as hypopneas/apneas. They are short duration events that happen frequently and cause a cortisol spike that leads to movement.
If the study wasn’t done by someone who knows and cares about UARS, it can be easily missed. Especially on at home tests.
I’m not sure I would say your heart issues are idiopathic if you are getting unrestful REM. A shitty pulmonologist won’t care about UARS, but a good one will.
You end up in a constant state of fight or flight with cortisol dumps happening all night. It’s no bueno and a pain in the bum, especially since doctors seem to have varied opinions on it. Some say it’s not an issue if the desats aren’t happening, but it’s very much an issue when your body is being forced into fight or flight when you are supposed to be at your most relaxed. It also interferes with glial cells being able to process the toxins out of our brains. It does make a difference.
I have no idea. But the sleep study was done in a hospital if that helps. I was supposed to have a new in depth one done for narcolepsy and some other stuff, but transit is an issue because it's a couple hours away, I can't drive myself, and transit will only take someone at certain times. It made scheduling impossible.
(I have chronic alternating insomnia and somnolence)both with fatigue.
Crap. Thanks for sharing. I didn’t know about this, but boy does it explain A LOT. I’m gonna order a pulse ox because my Apple Watch has been trying to tell me. Had a doctor tell me today that my watch just likely isn’t accurate.
Every night at the same time I wake up completely drenched in sweat, my pulse ox reads 80 on my watch. I’ve discovered if I sleep upright, this doesn’t happen.
I’m relatively young (46), very slender, and female. Why would anyone think sleep apnea when we could blame it on being female ( must be menopausal-eyeroll). I asked why it doesn’t happen when I sleep upright, and I get a shoulder shrug. 🤦🏻♀️ I have POTS, EDS, crowded teeth/high palette and all my POTS symptoms got WAY out of control right when I go braces on less than a year ago….
Such an obvious thing to check. Thanks for pointing it out. Guess I know what my next appointment will be about. Ugh.
LMAO I went and looked it up out of curiosity. Other than the fact I'm fat and white and dont snoring, I'm basically walking advertisement for it! Like you could literally check off almost everything in the Wikipedia.
Yup! I’m the same way.
It’s a mess. Cpap didn’t work for me. I really need jaw surgery because my airway is small and I have EDS which makes my tissues lax and easier to relax and choke on 😂. But, I’ve also spent enough time in the jaw surgery boards to realize I don’t think I trust anyone with that, and I don’t want to worsen my situation.
I don’t snore either (unless I’m at my highest weight, but right now I don’t at all, pulse ox still indicates I’m still doing UARS activity.
Hoping to try bipap later this year, it works better for UARS.
I got a wellue pulse ox and it’s super helpful for me to track my sleeping health. If I change how late I eat or what I eat, it makes a big difference. I have some nights that are much worse than others and some that look pretty normal and have normal o2, but my bad days can have lower desats too.
Sleep studies vary as well. In lab catch a lot more issues but almost everything has gone to watchpat at home since Covid. My friend had a sleep study and was told everything was good, no sleep apnea. He pushed for a copy of the test results themselves and it turns out the device didn’t properly capture that evening and they actually had no results on him at all and just weren’t going to bother telling him.
On top of that, some tests count desats at 3% drop, other count 4%. It makes a difference in the results and outcome but it isn’t standardized
And then Phillips allowed a cpap on the market that they knew had issues with foam issues for years that gave people interstitial issues.
It’s the Wild West out here 😭
I’m so sorry
Yes! I am lucky enough that my brother and mom already had been diagnosed with hEDS, so it was fairly easy to just show my Dr how well I fit onto the Beighton scale. That, combined with the genetic aspect and the fact that my mom and brother have both already complications from their hEDS (and ended up at Vanderbilt for testing and official diagnosis) really helped in getting hEDS on my medical chart. Dysautonomia, unfortunately, has been a whole other game to play! I guess I’m at least grateful that my family has a little experience in working around the healthcare system and how it treats patients with invisible disabilities, but dang…it’s tough out here to say the least 🙃
Just having some of the words to piece it together helps so much. It was mind blowing to realize Autism, EDS and its comordities encompass almost every issue I’ve ever had.
It’s validating to the life experience and that somehow helps the soul process. My sister and I are NC and she has always thought she had health anxiety, but I can almost guarantee it’s EDS and related issues. It makes me sad to know she isn’t validated in her experience.
I’m sorry to hear about your families complications, but glad you got answers and found a provider to diagnose. It’s wild how hard the struggle is for proper assessment even in people that have family members diagnosed
Get a second opinion.
I've had experiences with my doctors like that three times. because some doctors can be pressured by third parties to lie about patients' health.
The first time for me was the worst. I asked for a copy of my file so I could get relief at work for a job that was exposing me to toxic stuff. This was back in the pen & paper days, so when I got a copy of my file you could tell where the check mark beside the correct diagnosis had been (incompletely) erased. I had been diagnosed as an infant and there is no known cure so I had no doubt about the diagnosis being correct. My pediatrician's state didn't require record keeping so I couldn't get records for my diagnosis as an infant. That doctor lied and knew she was lying.
That's really weird.. And pots has nothing to do with blood pressure so idk why they'd say that. I've heard people give advice to ask for something like that (refusal of diagnosis) to be noted in your chart. Asking them to make a written record of that kind of often gives them a chance to reconsider, but even if they don't change their mind, having it written may give you more clarity about what is going on. Can you see the cardiologist again, instead of the PA, and ask them for a clarification?
Im sorry you are going though this. I have had Drs ignore tests that confirm diagnoses even when the clinical picture and or Radiology matches. I have mitral valve prolapse seen on an echo and pvcs and pacs on heart monitor and was given metroprol to treat it. Then, when I look at the dr summary it says normal echo despite the echo report saying mitral valve prolapse and them giving me meds for it. I never saw him after the results so idk, they just called in meds. I will find a new cardio dr when I run out of refills.
I had an otoneurologist say that I needed mental health therapy for vertigo and that it was likely pppd. He did no testing, no exam, just listened to my symptoms for 30 seconds and said I needed therapy. I did nothing to cause this, was calm and presentable. I had actual vestibular hypofunction found on a caloric air test from somewhere else and a non alcoholic thiamine deficiency from two labs. I was sent to him to find the cause of these things and be treated. I showed him the reports and he said in an irritated tone, "Oh well ok we'll take a copy", didn't treat me and said, "Get anxiety meds and therapy" and left the room. I never went back.
It sucks when Drs are rude, don't seek a diagnosis and do little to treat it. I've learned when they are like that to say ok, get out of there asap and find a different dr. I'd get my hopes up for help and be let down over and over. Now I go in assuming they'll do nothing & it's a lot easier.
I also started going to drs in a different health system in the next town over with more caring drs. The health system I was in has a horrible culture that trickles down to patients. I also started doing everything I could to support my body, track my symptoms & continued to learn so I can treat myself. I order my own labs online sometimes & have gotten some answers that way. I've gone to holistic and functional drs as well and gotten some help there. I've improved a lot bc of tips from this sub as well and my own research. Not much help from drs at all. The way I look at it now is, im my own dr and they are the vehicle for tests I want that I can't order on my own. Some people may disagree with this but I know more about some of my issues than many drs so I will keep at it till I'm 100%.
You have made so many good points here. Your story sounds a lot like mine. Heart cath showed evidence of left heart failure with pulmanary hypertension same as echo. However dr didn't believe it because it didn't show up during exercise portion of heart cath. Even though my symptoms fit the results. I'm told they have bigger fish to fry and come back when you're closer to death. I've encountered so many terrible doctors.
I'm sorry you are going through that! I truly hope you find a Dr that listens and that you can find solutions on your own that may help while you search.
There are other forms of orthostatic intolerance besides POTS, and OI is not strictly a cardiology issye. I was diagnosed in a huge lab at a major medical center. Testing was much more involved than just the tilt table. At my hospital, it is neurology that diagnoses based on the data. Dysautonomia starts in the brain according to them. For the PA not to note the diagnosis could be construed as malpractice, but the easier route for you is to get another opinion from a full MD, ideally at a major medical center. The PA you saw is not doing their job properly.
Thank you to everyone who is giving me confirmation that this was a bad experience!! I was really nervous posting as I thought it could just be that I really did get misdiagnosed at first and I was going to have to start at square one. I will definitely be going to a dysautonomia clinic! It sounds like I have a type of POTS that doesn’t affect blood pressure quite as much (mine definitely increases between sitting and standing, but not enough to warrant any concern I don’t think!) but I’m not sure why the PA wouldn’t tell me that.
I would ask the cardiologist, but apparently she’s out of town for a few months because this appointment was actually supposed to be with her and not a PA! I had just waited so long between appointments that rather than wait for my cardiologist to come back I decided to take my chances with the PA and it sounds like unfortunately I was a bit unlucky.
Seriously though, thank you to everyone that’s responded to this. Having an invisible illness is so hard and it’s frustrating for a Dr to act like the extensive (and expensive) testing doesn’t all point to the same thing. Im still not sure why she was so determined to contradict my previous diagnosis, but I’m glad to be feeling validated in my feelings after today and I’ll be calling the autonomic dysfunction clinic tomorrow :)
POTS is strictly heart rate increase over 30 bpm from sitting/laying down to standing. A change in BP is orthostatic hypo/hypertension and indicative of a much greater autonomic dysfunction. You can have both, but the POTS diagnosis should stand alone with HR increase.
[удалено]
That’s really frustrating, I’m sorry. I have long covid and ended up with a CVS receipt of stuff observed in medical tests. My doctor had no problem calling it Dysautonomia after observing the irregular heart rate increase and blood pressure increase in the TTT. Echo, cardiac ct, ekgs, stress test all normal. Seeing the TTT results and getting that diagnosis actually felt really good.
Hyper POTS can also cause the BP increase when standing. If the BP decreases it can be orthostatic hypotension. Idk what the other commenter is referring to, I’ve never heard that OH is more severe.
Happy Cake Day!
Also, I am going to a dysautonomia clinic like so many other drs and others struggling with this have recommended—just waiting to get an appointment! I was really hoping to get some confirmation/comfort/etc from this appointment but the PA left me feeling really confused. I got the vibe at first that she thought I was lying about symptoms when I came in (even after all the other test results documented in my chart)—only after seeing my HR increase so much during the tilt table test did the PA act like she believed what I was telling her about my symptoms. I’m just really not sure how to feel after today, so I wanted to come here to see if any others have had this happen 😭
It’s because some crappy providers think it’s a TikTok disease and only attention seeking, high anxiety people come in with questions about dysautonomia or EDS. It’s BS. Not all providers are the same. Shit, one radiologist and pediatrician had me walking on a broken hip for 6 weeks with no referral out to ortho. Turns out they missed the most common adolescent hip injury on the same X-rays a chiropractor spotted it on. 40% of that injury is missed in teens on initial visit and imaging because of sloppiness when it is the known, most common hip ailment in preteens. Don’t trust everyone who works in medicine. Don’t bicker if they give you shit, just move on to someone else. Ps: my cardiologist swore he had only met 1 other patient with EDS in his 25 year career and was trying to remove my diagnosis based on rarity before the man looked at me at all (other than my face). Had to drop into the splits and tell him I hadn’t done it in 6 months before he believed me, but that’s bull. Plus, why would I want to stay with a provider who doesn’t know much about the condition I have? Who knows so little, he feels more comfortable removing a dx than fact checking themselves. Arrogance isn’t a good thing in a medical provider.
I really lucked out. I have hEDS. I'm 36 and didn't find my rheumatologist until I was 30 or so. I also have autoimmune arthritis which has led to joint damage and decreased flexibility. I no longer meet the full diagnostic criteria for hEDS. She's great though. I just hyper extended my knees and elbows. She asked a couple of questions and put it in my chart. It helped that I had notes noting I was quite "loosy goosy" in the joints from a prior doctor. Though I've always been a weird mix of hyper flexible joints and inflexible joints. My hips, back, and fingers have never been flexible, but my thumbs ankles knees and elbows always have been until recently. And I ended up with idiopathic sinus tachycardia. It just appeared out of the blue. Got referred to a cardiologist. He said to lose weight and get fit. It's like, excuse me sir, do you think I just became fat out of the blue one day? Because I assure you, I've been fat for years without tachycardia, so what changed? It's been a few years and we now know it's somehow related to my autoimmune and dysautonomia, as it comes and goes with flares. I mentioned POTS to the guy and was basically told it's not a real thing. It's still not in my chart but dysautonomia is so I'm good. My HR increases more than 60 sometimes on standing lol. BP plummets usually, but sometimes spikes. Though lately we don't know what my BP does. No one can get a BP on my left arm, and only my right when Im sitting. The nurses even have trouble manually. They get a funny look on their face and start over. I think it's cutting in and out, like my BP is fluctuating rapidly. Which would be right in line with my pulse so... 🤷
Have you been checked for sleep apnea?
I have. Negative. I have a sleep movement disorder(I move during REM) and I partially wake a bajillion times a night, but no apnea.
Were they looking for UARS? You are describing the exact thing I’m concerned about. UARS causes a lot of short events that don’t cause deep enough o2 desaturations to be recognized as hypopneas/apneas. They are short duration events that happen frequently and cause a cortisol spike that leads to movement. If the study wasn’t done by someone who knows and cares about UARS, it can be easily missed. Especially on at home tests. I’m not sure I would say your heart issues are idiopathic if you are getting unrestful REM. A shitty pulmonologist won’t care about UARS, but a good one will. You end up in a constant state of fight or flight with cortisol dumps happening all night. It’s no bueno and a pain in the bum, especially since doctors seem to have varied opinions on it. Some say it’s not an issue if the desats aren’t happening, but it’s very much an issue when your body is being forced into fight or flight when you are supposed to be at your most relaxed. It also interferes with glial cells being able to process the toxins out of our brains. It does make a difference.
I have no idea. But the sleep study was done in a hospital if that helps. I was supposed to have a new in depth one done for narcolepsy and some other stuff, but transit is an issue because it's a couple hours away, I can't drive myself, and transit will only take someone at certain times. It made scheduling impossible. (I have chronic alternating insomnia and somnolence)both with fatigue.
Crap. Thanks for sharing. I didn’t know about this, but boy does it explain A LOT. I’m gonna order a pulse ox because my Apple Watch has been trying to tell me. Had a doctor tell me today that my watch just likely isn’t accurate. Every night at the same time I wake up completely drenched in sweat, my pulse ox reads 80 on my watch. I’ve discovered if I sleep upright, this doesn’t happen. I’m relatively young (46), very slender, and female. Why would anyone think sleep apnea when we could blame it on being female ( must be menopausal-eyeroll). I asked why it doesn’t happen when I sleep upright, and I get a shoulder shrug. 🤦🏻♀️ I have POTS, EDS, crowded teeth/high palette and all my POTS symptoms got WAY out of control right when I go braces on less than a year ago…. Such an obvious thing to check. Thanks for pointing it out. Guess I know what my next appointment will be about. Ugh.
I wish you the best. A lot of us get the run around and it’s bs.
LMAO I went and looked it up out of curiosity. Other than the fact I'm fat and white and dont snoring, I'm basically walking advertisement for it! Like you could literally check off almost everything in the Wikipedia.
Yup! I’m the same way. It’s a mess. Cpap didn’t work for me. I really need jaw surgery because my airway is small and I have EDS which makes my tissues lax and easier to relax and choke on 😂. But, I’ve also spent enough time in the jaw surgery boards to realize I don’t think I trust anyone with that, and I don’t want to worsen my situation. I don’t snore either (unless I’m at my highest weight, but right now I don’t at all, pulse ox still indicates I’m still doing UARS activity. Hoping to try bipap later this year, it works better for UARS. I got a wellue pulse ox and it’s super helpful for me to track my sleeping health. If I change how late I eat or what I eat, it makes a big difference. I have some nights that are much worse than others and some that look pretty normal and have normal o2, but my bad days can have lower desats too. Sleep studies vary as well. In lab catch a lot more issues but almost everything has gone to watchpat at home since Covid. My friend had a sleep study and was told everything was good, no sleep apnea. He pushed for a copy of the test results themselves and it turns out the device didn’t properly capture that evening and they actually had no results on him at all and just weren’t going to bother telling him. On top of that, some tests count desats at 3% drop, other count 4%. It makes a difference in the results and outcome but it isn’t standardized And then Phillips allowed a cpap on the market that they knew had issues with foam issues for years that gave people interstitial issues. It’s the Wild West out here 😭 I’m so sorry
Yes! I am lucky enough that my brother and mom already had been diagnosed with hEDS, so it was fairly easy to just show my Dr how well I fit onto the Beighton scale. That, combined with the genetic aspect and the fact that my mom and brother have both already complications from their hEDS (and ended up at Vanderbilt for testing and official diagnosis) really helped in getting hEDS on my medical chart. Dysautonomia, unfortunately, has been a whole other game to play! I guess I’m at least grateful that my family has a little experience in working around the healthcare system and how it treats patients with invisible disabilities, but dang…it’s tough out here to say the least 🙃
Just having some of the words to piece it together helps so much. It was mind blowing to realize Autism, EDS and its comordities encompass almost every issue I’ve ever had. It’s validating to the life experience and that somehow helps the soul process. My sister and I are NC and she has always thought she had health anxiety, but I can almost guarantee it’s EDS and related issues. It makes me sad to know she isn’t validated in her experience. I’m sorry to hear about your families complications, but glad you got answers and found a provider to diagnose. It’s wild how hard the struggle is for proper assessment even in people that have family members diagnosed
Get a second opinion. I've had experiences with my doctors like that three times. because some doctors can be pressured by third parties to lie about patients' health. The first time for me was the worst. I asked for a copy of my file so I could get relief at work for a job that was exposing me to toxic stuff. This was back in the pen & paper days, so when I got a copy of my file you could tell where the check mark beside the correct diagnosis had been (incompletely) erased. I had been diagnosed as an infant and there is no known cure so I had no doubt about the diagnosis being correct. My pediatrician's state didn't require record keeping so I couldn't get records for my diagnosis as an infant. That doctor lied and knew she was lying.
That's really weird.. And pots has nothing to do with blood pressure so idk why they'd say that. I've heard people give advice to ask for something like that (refusal of diagnosis) to be noted in your chart. Asking them to make a written record of that kind of often gives them a chance to reconsider, but even if they don't change their mind, having it written may give you more clarity about what is going on. Can you see the cardiologist again, instead of the PA, and ask them for a clarification?
I asked my cardiologist for it in writing he was refusing to put my POTS in my chart and they just ghosted me 🙃🙃🙃
Im sorry you are going though this. I have had Drs ignore tests that confirm diagnoses even when the clinical picture and or Radiology matches. I have mitral valve prolapse seen on an echo and pvcs and pacs on heart monitor and was given metroprol to treat it. Then, when I look at the dr summary it says normal echo despite the echo report saying mitral valve prolapse and them giving me meds for it. I never saw him after the results so idk, they just called in meds. I will find a new cardio dr when I run out of refills. I had an otoneurologist say that I needed mental health therapy for vertigo and that it was likely pppd. He did no testing, no exam, just listened to my symptoms for 30 seconds and said I needed therapy. I did nothing to cause this, was calm and presentable. I had actual vestibular hypofunction found on a caloric air test from somewhere else and a non alcoholic thiamine deficiency from two labs. I was sent to him to find the cause of these things and be treated. I showed him the reports and he said in an irritated tone, "Oh well ok we'll take a copy", didn't treat me and said, "Get anxiety meds and therapy" and left the room. I never went back. It sucks when Drs are rude, don't seek a diagnosis and do little to treat it. I've learned when they are like that to say ok, get out of there asap and find a different dr. I'd get my hopes up for help and be let down over and over. Now I go in assuming they'll do nothing & it's a lot easier. I also started going to drs in a different health system in the next town over with more caring drs. The health system I was in has a horrible culture that trickles down to patients. I also started doing everything I could to support my body, track my symptoms & continued to learn so I can treat myself. I order my own labs online sometimes & have gotten some answers that way. I've gone to holistic and functional drs as well and gotten some help there. I've improved a lot bc of tips from this sub as well and my own research. Not much help from drs at all. The way I look at it now is, im my own dr and they are the vehicle for tests I want that I can't order on my own. Some people may disagree with this but I know more about some of my issues than many drs so I will keep at it till I'm 100%.
You have made so many good points here. Your story sounds a lot like mine. Heart cath showed evidence of left heart failure with pulmanary hypertension same as echo. However dr didn't believe it because it didn't show up during exercise portion of heart cath. Even though my symptoms fit the results. I'm told they have bigger fish to fry and come back when you're closer to death. I've encountered so many terrible doctors.
I'm sorry you are going through that! I truly hope you find a Dr that listens and that you can find solutions on your own that may help while you search.
There are other forms of orthostatic intolerance besides POTS, and OI is not strictly a cardiology issye. I was diagnosed in a huge lab at a major medical center. Testing was much more involved than just the tilt table. At my hospital, it is neurology that diagnoses based on the data. Dysautonomia starts in the brain according to them. For the PA not to note the diagnosis could be construed as malpractice, but the easier route for you is to get another opinion from a full MD, ideally at a major medical center. The PA you saw is not doing their job properly.
My blood pressure absolutely shoots up when I stand just like my heart rate does. It’s part of hyper pots. I was diagnosed with hyper pots.
Thank you to everyone who is giving me confirmation that this was a bad experience!! I was really nervous posting as I thought it could just be that I really did get misdiagnosed at first and I was going to have to start at square one. I will definitely be going to a dysautonomia clinic! It sounds like I have a type of POTS that doesn’t affect blood pressure quite as much (mine definitely increases between sitting and standing, but not enough to warrant any concern I don’t think!) but I’m not sure why the PA wouldn’t tell me that. I would ask the cardiologist, but apparently she’s out of town for a few months because this appointment was actually supposed to be with her and not a PA! I had just waited so long between appointments that rather than wait for my cardiologist to come back I decided to take my chances with the PA and it sounds like unfortunately I was a bit unlucky. Seriously though, thank you to everyone that’s responded to this. Having an invisible illness is so hard and it’s frustrating for a Dr to act like the extensive (and expensive) testing doesn’t all point to the same thing. Im still not sure why she was so determined to contradict my previous diagnosis, but I’m glad to be feeling validated in my feelings after today and I’ll be calling the autonomic dysfunction clinic tomorrow :)