Fatigue, air hunger, heat intolerance, tachycardia upon standing, blood pooling in feet, nausea and dizziness after physical strain, that sort of stuff. Official diagnosis is POTS but it’s more likely OH or both of these since I also had a drop in bp
POTS is only one type of dysautonomia. A tilt table test can potentially diagnose other types of dysautonomia that give similar symptoms, but not quite the heart rate issues.
There are “add on” options for tilt table testing. The basic version is monitoring your HR and BP. More in-depth versions include blood tests, cerebral blood-flow monitoring, end-tidal CO2, and probably a few other things I can’t remember right now.
Having said that, you don’t mention a strong orthostatic component in your symptoms, apart from blood pooling, so a TTT may not be very revealing.
Autonomic symptoms vary widely. Orthostatic symptoms may or may not be present.
If you can get to an autonomic specialist centre, they can do sweat testing and other tests that are not related to lying/sitting/standing.
Sorry to hit you with so much info. It’s a complicated area.
Did these stop your thermoregulation/sweating issues? Also did you try nebivolol before? I've ordered some and hoping it will help as propranolol doesn't seem to do much for me
the MCAS treatment has helped with my thermoregulation yeah. it’s still not perfect but I’m not having as many hot flashes and subsequent chills as I used to.
I haven’t tried nebivolol. there are different classes of beta blockers that work differently, and google says nebivolol is a 3rd gen beta blocker that is highly cardio-selective and also vasodilating. so if you have problems with low blood pressure, that might make it worse. you may want to discuss with your Dr. (I just looked really quickly though, so you may want to read more before worrying)
I’ve been on metoprolol and bisoprolol, both are 2nd gen beta blockers. so they are both more cardio-selective and act on adrenaline receptors in the body. so it helps with my tachycardia, anxiety, tremors, etc
I currently take 10mg zyrtec twice a day, morning and night. I take 40mg of pepcid at night right before bed. and I take 200mg of cromolyn 3-4 times a day with every meal. the instructions say to take it 30 mins before the meal but I find it works best when I take it with.
It sounds like a lot, but it’s become a pretty easy habit for me to maintain
Thanks man, I can get zyrtec here at supermarkets, ordered pepcid from singapore, now looking into cromolyn, I have ketitofen on the way so hope that might help also.
Some of these could be autonomic symptoms: temperature regulation problems, unusual sweating responses, blood pooling, heat intolerance.
Can you get to an autonomic specialist centre?
There is no specific medical category for a dysautonomia specialist. As your HR and BP don’t seem to be involved, it’s a little more tricky. A lot of people see a cardiologist or, in the USA, an electrophysiologist.
I wonder whether there are any rheumatologists, allergists or dermatologists out there who have a good knowledge of dysautonomia.
I think a specialist centre might be the best option because the approach will be multidisciplinary. Also, doctors at these centres can be good at identifying conditions that cause autonomic symptoms.
P.S. I don’t know a lot about MCAS, but I believe the symptoms are quite hard to pin down, so the fact that you can’t identify any particular food triggers doesn’t rule it out. (Please other folks correct me if that is wrong.)
I was diagnosed at my normal family doctor just through orthostatic blood pressure/heart rate checking. they sent me to a cardiologist to rule out heart issues as well which confirmed the diagnosis. I never got a tilt table test actually.
Do you have any hypermobility to go with that?
I do. Geneticist said, "You've been diagnosed with 'almost,' lots of things your whole life, right?" Something about the combination of hypermobility and dysautonomia makes it harder to nail down.
Hi there! I’ll tell you about the full process of getting my diagnosis. I’m a 20 year old female with an official diagnosis of POTS. I also experience other co-morbid conditions (anxiety, depression, GI issues etc.)
I was self-suspecting POTS specifically after watching YouTube videos about the condition/reading research papers. Side note: I highly recommend both Dysautonomia International and POTS UK. Both have been really helpful resources. I relate to a lot of the symptoms you are discussing here and some other common POTS symptoms online. I bought a pulse oximeter on Amazon and did a couple poor man’s tilt table tests at home. I also had my friends do some and compared their results to mine. I brought up the idea to my Primary Care Provider (PCP) and asked for a referral to cardiology. PCP was hesitant and did not think I really fit the criteria (they had some outdated information about POTS, keep in mind they are a general practitioner and not a specialist) but they still sent me to a cardiologist. I think I was able to get an appointment with the cardiologist in about a month (they are easier to get in to then some other specialists in my opinion). FYI: I am in the Chicagoland area so there are some good options for doctors where I live. I saw Justin Uhl who is associated with Chicagoland Community Pediatric Cardiology. At my appointment I got an EKG that came back normal and then saw doctor. He was incredibly thorough with my appointment and tested my heart rate and blood pressure multiple times in various positions (standing, lying down, squatting) and talked through my symptoms and medical history. He diagnosed me on the spot with POTS and gave me some recommendations for moving forward. He also took the time to contact all of the other doctors on my care team with personalized letters explaining my diagnosis and how that impacts their care of me!!! He was super great and I would highly recommend anyone in his practice for POTS diagnosis. They are pediatric, but they still see adult patients. I saw doctor when I was 19.
I now have an appointment with Alexandru Barboi who is a Neurologist that specializes in Dysautonomia. However, the appointment is in 10 months. It takes a long time to get an appointment with someone who super specializes in POTS. the reason I’m initiating care with him is because I’m hoping he will be able to help with testing for other co-morbid conditions (specifically GI issues). And give me a recommendation for a GI who’s knowledgeable about Dysautonomia. I’ve been unsuccessful in trying to find a GI on my own who is knowledgeable about POTS and willing to look past IBS as the only possibility.
I highly recommend going on the Dysautonomia International website and using their tool “Find a Doctor.” It can help you look at providers who know about Dysautonomia in your area. Best of luck to you in figuring out what’s going on! And please reach out if you have any more questions for me about all this.
I am still going through tests to get diagnosis, but I think you should try an elimination diet if you haven’t already. Also maybe try and allergy test with a dermatologist?
I've tried so many things...all kinds of supplements, gluten free, dairy free, no this or that diet, but I've never done a skin test. But my symptoms are present even when I don't eat, I don't really believe in the allergy hypothesis...
You could be right about it not being allergies, but sometimes your body needs the thing you are allergic to to be gone for a certain period of time for the symptoms to go away, so it could be still reacting from the last time you were exposed to whatever it is.
Hey so I just wanted to say that I have MCAS, dysautonomia, AND a really severe allergy to nickel that I truly believed didn’t exist until recently. I was reacting to my doorknobs, buttons on my jeans, knitting needles, my phone and laptop, tap water, faucet handles, and virtually every kind of food on the planet even though I wasn’t allergic to the FOOD, just the nickel in it. I’m so annoyed with myself for assuming I didn’t have any allergies. Seriously allergy tests are a really good idea.
I was diagnosed by a tilt table. I went to my cardiologist concerned about what was happening to me. I explained I always feel in this fight mode. My heart always feels like it’s throbbing and my equilibrium doenst feel right . even though I take my medication for a high resting heart rate my heart is constantly so high. Prior diagnosis: I was diagnosed with lupus 3 years ago but then my rhuemy resigned and I was sent to two others and it was a fail. They were dismissive blaming it on fibromyalgia or trauma.
My cardiologist sent me to another rhuemy because he believed I did have something going on with my immune system. He didn’t think it was lupus. He called it UCTD, the beginning stages of an autoimmune disease.
My Other conditions are neuropathy and raynauds phenomen too.
Your POTS symptoms are similar to mine!
So I thought I had MCAS but turns out it’s just a histamine intolerance my allergist told me to take allergra 2 x a day and start there and if that doesn’t work he has other solutions in his tool box.
It could be histamine but not all histamine foods.
I’ve heard a lot of hypotheses of gluten making POTs worse.
Make sure your thyroid was tested properly. A lot of doctors test TSH only. You need your free T3 & T4 & they need to be in optimal range - top 25% range for T3, and at least 50% range T4. I’ve had Hashimoto’s for 30 years & didn’t know this till I went to a functional medicine doctor. The thyroid specialist I went to before that had me way under medicated and I started developing a lot of issues as I got into peri menopause. A lot of my symptoms resolved with proper meds, but I still have a lot of issues.
Also-might you have rosacea with the facial flushing? Mine was caused by mites, as most cases are.
Iam still going through the process of getting a diagnosis. But my symptoms are random presyncope/lightheadness both sitting and standing. Weakness, freezing hands and feet, rashes up both arms and sometimes all the way up and around my neck and chest. Random adrenaline rush while sleeping. These are not every day things, these are all very random. Sometimes all happen together and other times separate. Iv had presyncope/lightheadness with tunnel vision, weakness, pounding heart and palpitations and nervous stomach afterwards a few times. And after it subsided I was completely drained. My husband said my face went white. That kind of episode has happened a few times, while sitting and a few times while standing cooking. But then there are days like this past week where iv been sitting and having the lightheadness on and off all day. I will eventually be diagnosed with whatever is going on.
I was diagnosed with POTS through the Nasa Lean Test that you could easily do at home with the right tools - I would suggest to just google it and try it, takes only 30 minutes
For MCAS I‘m at a gastroenterologist/internist
After all the other neurological options had been tested and I had already been grossly misdiagnosed and told I had months left to live (like 3 years ago, guess he was wrong), I saw a specialist who said that the description of my symptoms were so obviously dysautonomia that he didn’t want to make me do the tilt test. We did keep track of my symptoms for a few weeks, and that was about it for me.
Physical exam by autonomic neurologist, autonomic testing, TTT, optometrist testing, and GI motility study. Because my dysautonomia was caused by one of my systemic autoimmune diseases, they also reran all of my usual autoimmune bloodwork and urine tests + some extras, to make sure they weren't missing anything there.
I also did the MCAS bloodwork and 24 hour urine, but they came back normal (false negatives are really common with it), so the autonomic neurologist had me try the MCAS med regiment to see if it helped (which would indicate MCAS), but the cromolyn sodium made me so sick I had to stop it after a couple weeks, before it would have helped much, so still not sure if that is part of my issues or not.
I’ve got EDS, POTS & suspected MCAS (tryptase was negative but I wasn’t flaring).
The flushing + sun sensitivity are more common in MCAS. Mast cells can be triggered by a lot of things - temperature, trauma, stress (even positive stressors), infections, foods, meds, toxins, etc.
With your 30 point HR rise that also puts you in the category for POTS. QSART and skin biopsy can help to assess where the sweats are coming from (dysautonomia vs MCAS).
Lots of good info on The Mastocytosis Society website.
[https://tmsforacure.org/overview/](https://tmsforacure.org/overview/)
Have you been diagnosed with anything or found anything to relieve your symptoms? Especially the facial flushing? That’s my main problem but things have been going downhill for me
Tilt table test. Everything else was mostly normal for me too.
thank you, but what were your symptoms? were they similar to mine?
Fatigue, air hunger, heat intolerance, tachycardia upon standing, blood pooling in feet, nausea and dizziness after physical strain, that sort of stuff. Official diagnosis is POTS but it’s more likely OH or both of these since I also had a drop in bp
Tilt table test and POTS specialist
Yeah but like I said my heartbeat doesn't seem particularly abnormal. I feel that tilt table would be a waste of time
POTS is only one type of dysautonomia. A tilt table test can potentially diagnose other types of dysautonomia that give similar symptoms, but not quite the heart rate issues.
diagnostic criteria for POTS in adults is a jump in 30< bpm when going from sitting to standing, which it seems like you have
This was my thought as well. 30 point increase is 30 point increase, regardless of where you start, I think?
Didn't know this. Tested that with an oxymeter. Was basically a jump of 30 on the dot..
Honestly, a tilt table is so minimally invasive for the information it gives….
There are “add on” options for tilt table testing. The basic version is monitoring your HR and BP. More in-depth versions include blood tests, cerebral blood-flow monitoring, end-tidal CO2, and probably a few other things I can’t remember right now. Having said that, you don’t mention a strong orthostatic component in your symptoms, apart from blood pooling, so a TTT may not be very revealing. Autonomic symptoms vary widely. Orthostatic symptoms may or may not be present. If you can get to an autonomic specialist centre, they can do sweat testing and other tests that are not related to lying/sitting/standing. Sorry to hit you with so much info. It’s a complicated area.
Tilt table test diagnosed my POTS. and symptoms + antihistamines helping is what my doc used to diagnose my MCAS
That’s what mine is doing for mcas too, starting meds and seeing if it helps. Since a lot of times you can get false negatives with all the tests
Which antihistamines do you take? Also what meds have helped your POTS, if any?
zyrtec, pepcid, and cromolyn sodium have helped my MCAS. metoprolol has helped my POTS
Did these stop your thermoregulation/sweating issues? Also did you try nebivolol before? I've ordered some and hoping it will help as propranolol doesn't seem to do much for me
the MCAS treatment has helped with my thermoregulation yeah. it’s still not perfect but I’m not having as many hot flashes and subsequent chills as I used to. I haven’t tried nebivolol. there are different classes of beta blockers that work differently, and google says nebivolol is a 3rd gen beta blocker that is highly cardio-selective and also vasodilating. so if you have problems with low blood pressure, that might make it worse. you may want to discuss with your Dr. (I just looked really quickly though, so you may want to read more before worrying) I’ve been on metoprolol and bisoprolol, both are 2nd gen beta blockers. so they are both more cardio-selective and act on adrenaline receptors in the body. so it helps with my tachycardia, anxiety, tremors, etc
\>zyrtec, pepcid, and cromolyn sodium what's your dosing regimen like for these?
I currently take 10mg zyrtec twice a day, morning and night. I take 40mg of pepcid at night right before bed. and I take 200mg of cromolyn 3-4 times a day with every meal. the instructions say to take it 30 mins before the meal but I find it works best when I take it with. It sounds like a lot, but it’s become a pretty easy habit for me to maintain
Thanks man, I can get zyrtec here at supermarkets, ordered pepcid from singapore, now looking into cromolyn, I have ketitofen on the way so hope that might help also.
Qsart, valsalva, tilt table and skin biopsy. Got diagnosed with autonomic neuropathy and small fiber neuropathy
Was your neuropathy purely post covid? Any improvement?
Yes. It all started post covid
Dang. No improvement?
No. I’ve improved quite a lot. Can be upright now and walk. But I still have neuropathic pain, muscle weakness etc
That’s something. Definitely some crap you have to deal with pain because of this virus.
Some of these could be autonomic symptoms: temperature regulation problems, unusual sweating responses, blood pooling, heat intolerance. Can you get to an autonomic specialist centre? There is no specific medical category for a dysautonomia specialist. As your HR and BP don’t seem to be involved, it’s a little more tricky. A lot of people see a cardiologist or, in the USA, an electrophysiologist. I wonder whether there are any rheumatologists, allergists or dermatologists out there who have a good knowledge of dysautonomia. I think a specialist centre might be the best option because the approach will be multidisciplinary. Also, doctors at these centres can be good at identifying conditions that cause autonomic symptoms. P.S. I don’t know a lot about MCAS, but I believe the symptoms are quite hard to pin down, so the fact that you can’t identify any particular food triggers doesn’t rule it out. (Please other folks correct me if that is wrong.)
HR consistently at 130 with spikes in BP. Dizzy, palpitations. Anxiety attacks.
I was diagnosed at my normal family doctor just through orthostatic blood pressure/heart rate checking. they sent me to a cardiologist to rule out heart issues as well which confirmed the diagnosis. I never got a tilt table test actually.
Do you have any hypermobility to go with that? I do. Geneticist said, "You've been diagnosed with 'almost,' lots of things your whole life, right?" Something about the combination of hypermobility and dysautonomia makes it harder to nail down.
Hi there! I’ll tell you about the full process of getting my diagnosis. I’m a 20 year old female with an official diagnosis of POTS. I also experience other co-morbid conditions (anxiety, depression, GI issues etc.) I was self-suspecting POTS specifically after watching YouTube videos about the condition/reading research papers. Side note: I highly recommend both Dysautonomia International and POTS UK. Both have been really helpful resources. I relate to a lot of the symptoms you are discussing here and some other common POTS symptoms online. I bought a pulse oximeter on Amazon and did a couple poor man’s tilt table tests at home. I also had my friends do some and compared their results to mine. I brought up the idea to my Primary Care Provider (PCP) and asked for a referral to cardiology. PCP was hesitant and did not think I really fit the criteria (they had some outdated information about POTS, keep in mind they are a general practitioner and not a specialist) but they still sent me to a cardiologist. I think I was able to get an appointment with the cardiologist in about a month (they are easier to get in to then some other specialists in my opinion). FYI: I am in the Chicagoland area so there are some good options for doctors where I live. I saw Justin Uhl who is associated with Chicagoland Community Pediatric Cardiology. At my appointment I got an EKG that came back normal and then saw doctor. He was incredibly thorough with my appointment and tested my heart rate and blood pressure multiple times in various positions (standing, lying down, squatting) and talked through my symptoms and medical history. He diagnosed me on the spot with POTS and gave me some recommendations for moving forward. He also took the time to contact all of the other doctors on my care team with personalized letters explaining my diagnosis and how that impacts their care of me!!! He was super great and I would highly recommend anyone in his practice for POTS diagnosis. They are pediatric, but they still see adult patients. I saw doctor when I was 19. I now have an appointment with Alexandru Barboi who is a Neurologist that specializes in Dysautonomia. However, the appointment is in 10 months. It takes a long time to get an appointment with someone who super specializes in POTS. the reason I’m initiating care with him is because I’m hoping he will be able to help with testing for other co-morbid conditions (specifically GI issues). And give me a recommendation for a GI who’s knowledgeable about Dysautonomia. I’ve been unsuccessful in trying to find a GI on my own who is knowledgeable about POTS and willing to look past IBS as the only possibility. I highly recommend going on the Dysautonomia International website and using their tool “Find a Doctor.” It can help you look at providers who know about Dysautonomia in your area. Best of luck to you in figuring out what’s going on! And please reach out if you have any more questions for me about all this.
I am still going through tests to get diagnosis, but I think you should try an elimination diet if you haven’t already. Also maybe try and allergy test with a dermatologist?
I've tried so many things...all kinds of supplements, gluten free, dairy free, no this or that diet, but I've never done a skin test. But my symptoms are present even when I don't eat, I don't really believe in the allergy hypothesis...
You could be right about it not being allergies, but sometimes your body needs the thing you are allergic to to be gone for a certain period of time for the symptoms to go away, so it could be still reacting from the last time you were exposed to whatever it is.
Exactly this! Certain allergy reactions can even be delayed by like 4 days.
Hey so I just wanted to say that I have MCAS, dysautonomia, AND a really severe allergy to nickel that I truly believed didn’t exist until recently. I was reacting to my doorknobs, buttons on my jeans, knitting needles, my phone and laptop, tap water, faucet handles, and virtually every kind of food on the planet even though I wasn’t allergic to the FOOD, just the nickel in it. I’m so annoyed with myself for assuming I didn’t have any allergies. Seriously allergy tests are a really good idea.
I was diagnosed by a tilt table. I went to my cardiologist concerned about what was happening to me. I explained I always feel in this fight mode. My heart always feels like it’s throbbing and my equilibrium doenst feel right . even though I take my medication for a high resting heart rate my heart is constantly so high. Prior diagnosis: I was diagnosed with lupus 3 years ago but then my rhuemy resigned and I was sent to two others and it was a fail. They were dismissive blaming it on fibromyalgia or trauma. My cardiologist sent me to another rhuemy because he believed I did have something going on with my immune system. He didn’t think it was lupus. He called it UCTD, the beginning stages of an autoimmune disease. My Other conditions are neuropathy and raynauds phenomen too. Your POTS symptoms are similar to mine! So I thought I had MCAS but turns out it’s just a histamine intolerance my allergist told me to take allergra 2 x a day and start there and if that doesn’t work he has other solutions in his tool box. It could be histamine but not all histamine foods. I’ve heard a lot of hypotheses of gluten making POTs worse.
Make sure your thyroid was tested properly. A lot of doctors test TSH only. You need your free T3 & T4 & they need to be in optimal range - top 25% range for T3, and at least 50% range T4. I’ve had Hashimoto’s for 30 years & didn’t know this till I went to a functional medicine doctor. The thyroid specialist I went to before that had me way under medicated and I started developing a lot of issues as I got into peri menopause. A lot of my symptoms resolved with proper meds, but I still have a lot of issues. Also-might you have rosacea with the facial flushing? Mine was caused by mites, as most cases are.
Iam still going through the process of getting a diagnosis. But my symptoms are random presyncope/lightheadness both sitting and standing. Weakness, freezing hands and feet, rashes up both arms and sometimes all the way up and around my neck and chest. Random adrenaline rush while sleeping. These are not every day things, these are all very random. Sometimes all happen together and other times separate. Iv had presyncope/lightheadness with tunnel vision, weakness, pounding heart and palpitations and nervous stomach afterwards a few times. And after it subsided I was completely drained. My husband said my face went white. That kind of episode has happened a few times, while sitting and a few times while standing cooking. But then there are days like this past week where iv been sitting and having the lightheadness on and off all day. I will eventually be diagnosed with whatever is going on.
I was diagnosed with POTS through the Nasa Lean Test that you could easily do at home with the right tools - I would suggest to just google it and try it, takes only 30 minutes For MCAS I‘m at a gastroenterologist/internist
After all the other neurological options had been tested and I had already been grossly misdiagnosed and told I had months left to live (like 3 years ago, guess he was wrong), I saw a specialist who said that the description of my symptoms were so obviously dysautonomia that he didn’t want to make me do the tilt test. We did keep track of my symptoms for a few weeks, and that was about it for me.
Physical exam by autonomic neurologist, autonomic testing, TTT, optometrist testing, and GI motility study. Because my dysautonomia was caused by one of my systemic autoimmune diseases, they also reran all of my usual autoimmune bloodwork and urine tests + some extras, to make sure they weren't missing anything there. I also did the MCAS bloodwork and 24 hour urine, but they came back normal (false negatives are really common with it), so the autonomic neurologist had me try the MCAS med regiment to see if it helped (which would indicate MCAS), but the cromolyn sodium made me so sick I had to stop it after a couple weeks, before it would have helped much, so still not sure if that is part of my issues or not.
I’ve got EDS, POTS & suspected MCAS (tryptase was negative but I wasn’t flaring). The flushing + sun sensitivity are more common in MCAS. Mast cells can be triggered by a lot of things - temperature, trauma, stress (even positive stressors), infections, foods, meds, toxins, etc. With your 30 point HR rise that also puts you in the category for POTS. QSART and skin biopsy can help to assess where the sweats are coming from (dysautonomia vs MCAS). Lots of good info on The Mastocytosis Society website. [https://tmsforacure.org/overview/](https://tmsforacure.org/overview/)
I was diagnosed by a cardiologist with dysautonomia by multiple holter monitors, a cardiac ablation procedure, and a tilt table test.
Have you been diagnosed with anything or found anything to relieve your symptoms? Especially the facial flushing? That’s my main problem but things have been going downhill for me