Sam4877

Hi All,

I have POTs symptoms and what happens sometimes is when I stand up or sit down my heart rate decreases suddenly then starts racing again and when it decreases I get a really bad feeling in my chest where my heart is.

Is this normal with POTs? Because I thought in POTs the heart rate only increases, but in my case it decreases and I get a pounding sensation then it increases again.

TIA

I have been having constant feeling of fullness in my stomach since the past 8 years, whenever I eat a meal it feels like the food sits in the stomach the whole day and I don't ever feel hungry for Breakfast, lunch or dinner. I get constant burping after every meal even from just drinking water. Does anyone else have the same symptoms as me and know what can help? My Gastroenterologist has referred me for a Upper GI Endoscopy, however he believes this is not Gastroparesis but Gastritis. I don't have any symptoms compatible with Gastritis, I assume he is not very experienced with Gastroparesis.

Does anyone know if Cholinergic Urticaria linked with POTS/Dysautonomia? I get hives on my arms after I excerice and sweat or take a hot shower.

I have read alot about Coenzyme Q10 reducing Systolic Blood Pressure by 17mmhg and Diastolic Blood Pressure by 10mmhg on average. Has anyone tried this instead of going on Blood Pressure Medication?

Sources:

http://pennstatehershey.adam.com/content.aspx?productid=107&pid=33&gid=000295#:~:text=In one analysis%2C after reviewing,numbers of people is needed.

https://www.verywellhealth.com/improve-blood-pressure-with-coq10-supplements-4129265

Hi All,

I have been measuring my blood pressure in supine, sitting and standing positions and I have noticed that my sitting blood pressure is significantly higher than my supine and standing blood pressure.

Standing BP is lowest followed by Supine and Sitting is highest.

Another thing I have noticed is that transitioning from a standing to supine position my blood pressure increases by 15-20 points systolic and 8-12 points diastolic, is this normal?

This does not make sense to me, has anyone else expirienced anything like this?

Thanks in advance!

20 minutes ago, Pistol said:

@Sam4877 - I believe that heart rate recovery is different when you have POTS. I know that for me my rate is definitely longer after exercise ( however - I stop and rest if an activity causes my HR to go up, to prevent a flare ). In POTS the  ANS malfunctions - so you probably can't compare your reactions to the norm. Personally I see no concern to worry about a long HRR being a mortality indicator. Don't worry - and be well!!!!

Thanks for easing my anxiety @Pistol 

Hi All,

I read on several different websites where it said that after doing strenuous excercise if the heart rate doesn't fall more than 12bpm after 1 minute it is a predictor of all cause mortality. This really concerns me because after exercise my heart rate doesn't fall very quickly, sometimes around 8-10bpm after 1 minute and then takes hours for it to come back into normal range under 100bpm. Is this a cause of concern or does this not apply to us because we have POTs?

References:

https://www.ahajournals.org/doi/full/10.1161/JAHA.117.008341

https://www.nejm.org/doi/full/10.1056/nejm199910283411804#:~:text=Heart-Rate Recovery and Mortality&text=An abnormal value for heart,5.2%3B P<0.001).

I am a 25 year old male 5ft 10inch and 75kg.

I had an echocardiogram done recently due to my High Blood Pressure from HPOTs. When I went to see my Doctor for the results he said everything was normal, however when he gave me the report I found a few concerning details.

Ejection Fraction was 80%
Fraction Shortening was 48%
IVSd was 1cm
LVPWd was 0.9cm

Should I be concerned about such a high Ejection Fraction and Fraction Shortening?

Do my IVSd and LVPWd values indicate borderline Left Ventricular Hypertrophy?

Thanks in advance!

Does anyone with Dysautonomia/POTS have visual disturbances when they strain on the toilet? I am seeing phosphenes very often now which is like squiggly lines/shooting stars in my peripheral vision which disappears after a few seconds.

Does anyone here have a difference of 10mmhg or greater blood pressure between both left and right arms? I consistently have a difference of 10mmhg or greater between the 2, my right arm is consistently lower than my left arm for both systolic and diastolic.

I am freaking out because everywhere on the internet it says that it is a sign of a blocked artery and increases chance of mortality. 

Thanks in Advance!

32 minutes ago, RobinB said:

I don’t know if it’s normal with POTS but I have it too.

Do you have EDS by any chance?

Hi All, my hands and legs go numb very often when I am laying down or sitting in a position where there is a little bit of pressure on them is this normal with POTS? When I am sleeping most of the times my arms are numb.

Hi guys, I have been consistently getting a resting BP of 122/77 (sitting BP) since a very long time and since the past few weeks it has changed to 135/91 (sitting BP) and standing BP which use to be 135/92 to 111/77. I was suspected to have hyperadrenergic POTs and always had a high standing bp and normal sitting bp. Has anyone else experienced something similar where the BP's flip sides? My HR still goes up which is consistent with POTS.

47 minutes ago, Sam4877 said:

@Pistol have you also noticed a difference in blood pressure for the right and left arm? I have a bp of 137/90 in left arm and 121/79 in right arm. I read online that this could be due to peripheral artery disease, however I'm only 25. Do I need to be concerned or is this normal with dysautonomia?

Is yours under 10 mmHg or more? Mine seems to be more than that.

@Pistol have you also noticed a difference in blood pressure for the right and left arm? I have a bp of 137/90 in left arm and 121/79 in right arm. I read online that this could be due to peripheral artery disease, however I'm only 25. Do I need to be concerned or is this normal with dysautonomia?

45 minutes ago, Goldfinch said:

This is really interesting. I'm about to have 24 hr BP testing. BP has suddenly gone high but shoots up when I stand, I've been testing it at home with an omron too and sometimes I let my arm hang down on standing, other times bent but still relaxed. Sam, when you say your tests are clear for hyperpots do you mean your heart rate doesn't shoot up enough? I have quite disabling symptoms (also have hEDS) but on standing my BP shoots up, especially diastolic, but my heart rate doesn't always. However if I walk a few steps, then it does. I'm about to have tests to rule out other stuff but from researching I'm suspecting hyper pots or a mild version, from a comment from an ooh Dr who suspected dysautonomia when my diastolic went up to 150 and then lowered again when I sat down. 

Hi @Goldfinch Standing BP should always be measured with your arm resting at your heart level relaxed.  I learnt this because I did alot of experimenting and whenever I would let the arm hang it would be extremely high eg 150/100 and next minute I took it arm resting at heart level and the BP was 125/85.

I suspect I also have a mild version of HyperPots, when I stand up from a sitting position both my HR and BP increase, however its not as extreme as some other people on this forum.

I haven't been tested for HyperPots yet because it is very difficult to find a Dysautonomia specialist where I live in Melbourne, Australia.

I have been tested for the following below.

- Echocardiogram (Normal)

- ECG/EKG (Normal)

- Full Blood Evaluation and Blood Tests for Vitamin D, Iron, B12, Folate, LFT, Cholestrol and FE (Normal)

- 24 Hour Catecholamines Urine Test (Results Pending)

- 24 Hour Holter Monitor (Normal)

- Brain MRI (Normal)

I currently use an Omron digital one for the arm. That's interesting to know because if the position is wrong then you can be hypertensive.

@Pistol Would it be normal to get such a big difference?

I have undiagnosed HyperPots since about 9-10 years and I have not been taking any medication.

I have had all the tests done several times to check my heart and everything has been clear. (ECG, ECHO, 24  hr Holter etc)

When I walk a little my BP shoots up to 150 - 160's Systolic and 100+ Diastolic.

But here is where it gets complicated, when I take the BP with my arm down the BP is 160/108 and if I rest my arm at heart level standing it is 130/90.

Which of these measurements are more accurate? If the one pointing arm down is correct then does that mean I can have a stroke by just walking a little?

I have been booked for a 24hr BP Monitor, does that mean if the arm down method is incorrect the measurements for everyone on 24hr BP Monitor is incorrect as well?

Thanks in advance!

1 hour ago, Pistol said:

@Sam4877 - yes, this is typical for me. I have hyperadrenergic POTS and commonly my BP would have those numbers. When supine my BP is normal(ish) but as soon as I move, and especially when standing up, it used to jump up to 150's/90's with high HR, exactly as it does for you. The diastolic hypertension along with tachycardia and symptoms of fight-or-flight are text-book for HPOTS and are caused by the blood vessels suddenly and severely constricting due to norepinephrine dumping. What has stabilized these symptoms for me are the following medications: Carvelidol ( beta blocker ), Diltiazem ( calcium channel blocker ), Guanfacine ( BP med ) and Lexapro ( SSRI - balances neurotransmitter levels in the brain ). In addition to that the MOST effective treatment are regular IV fluids, they prevent vasoconstriction and normalize my BP. Today my readings are completely normal regardless of position or activity, unless I am in a flare. 

Thanks for the reply @Pistol

Do you take all this medication together? And have you also been checked for Pheochromocytoma?

Does anyone elses Blood Pressure fluctuate wildly between readings?

My BP can increase from the slightest of activity for example switching sides in bed or walking a little etc. These activities can increase my bp from 124/82 to 150/95.

I currently have POTs with a increase in HR and diastolic BP upon standing.

I am concerned about the regular spikes in my bp while doing regular activities.

@PistolHi thanks for the reply 😀 I have had several ecgs, echocardiograms, holter monitors and when I had my TTT the bp fell instead of rising. The weird thing is that my bp spike when standing only lasts a few seconds then returns to normal. But when I walk or run the diastolic rises with systolic so if my systolic is 140 the diastolic will be 100. If I work out sitting only the systolic rises and disstolic falls slightly. I have never taken any meds. I suspect this is from vasoconstriction/hypovolemia when I am standing. What meds do you take?

Hi I have POTs but when I stand up from a sitting position the hr goes up 30+ and bp rises slightly, if my sitting bp is 125/82 then standing rises to 128/90 then it drops down to 118/82. I expiremented after running a bit that my bp rose to 145/100. Is this normal? My main concern is that the diastolic is rising too much but then it falls quickly too with the next measurement. Most people on the internet say that only systolic rises during excercise but no one talks about diastolic. There is very little information about diastolic rises. Does this temporary spike during excercise harm me? I am suspecting I have hyper-pots because I have never fainted but hr rises above 100.