haugr

The blood sugar issue, lack of pain, lack of tears, and the voice issues are not normally associated with dysautonomia - at least not in any literature that I have read. The other symptoms are consistent with dysautonomia, but could also be explained by other things too.

I'm a nuun fan.

I am sure that there are other explanations, but your symptoms sound very similar to mine and are pretty typical of someone who is hypovolemic, or what Julian Stewart refers to as "low flow" POTS. Finding the right balance of Losartan, clonidine, and sodium got me back on my feet again. I posted my detailed learnings from my battle with it here http://hyperpots.blogspot.com

Chest pains are not considered normal and should ALWAYS be followed up on with a doctor due to the seriousness nature of potential heart problems. It is not worth hoping that there isn't an issue. They have the ability to do stress tests to determine if you have exercise induced heart problems. As a general rule, your heart rate should not exceed 85% of your max target heart rate during exercise. For a 30 year old that would be about 160. I would suggest starting slower too if you havent exercised much recently and slowly work your way up. Dont push it too hard too fast. If you are above your max, you should probably slow down, or do a different type of exercise. Swimming, recumbant excersise bikes, and rowing machines are good options for us POTSies because we can exercise with limited POTS effects. As always, consult your physician before heeding any online advice from us non-medical professionals

I'm no expert on this subject, but I am under the impression that the line between POTS and anxiety can be blurry. The cause is different, but both essentially activate the sympathetic nervous system. I don't think you would be normal if your POTS symptoms didn't cause some anxiety. Even a little bit of anxiety can certainly exaccerbate your tachycardia, especially if you are already tachy from the POTS. I once witnessed someone having what I think was a panic attack and those symptoms seemed a little bit different. Hyperventilating was the most noticeable symptom, which I have never had with POTS.

Your doctors are incorrect. A rise in blood pressure while upright is a common symptom.

That's actually a pretty low amount of salt if you have a POTS diagnosis. Each person requires a diferent amount, but like Lily said, 4-8+ additional grams isn't uncommon. If you do end up increasing your salt intake more, just keep a close eye on your blood pressure. And I'll just add here the obligatory comment about consulting your physician first.

How much fluids and salt are you consuming now and how much you were consuming prior to being diagnosed? How is your blood pressure? Are there any other symptoms?

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Thats a tough one. Based on your description, I might guess a cardiac output issue. It actually sounds somewhat similar to how I have heard people with a-fib describe their condition. Have you by chance done holter monitors and stress tests?

I never had any tests done to check if I was hypovolaemic, but my doctor was pretty confident that I was from early on. Fludrocortisone never really came up, but I don't seem to need nearly as much extra sodium and fluids as some POTSies. An extra 2 grams of sodium through sports drinks and sodium chloride tablets is enough for me.

None of the doctors that I visited directly tested me for angiotensin ii, and I'm not sure if there is a common test available. My doctor said it was more of a "lets try this treatment to see how you respond" type of a thing. In my opinion though, if you are abnormally frequently urinating, and diabetes has already been ruled out, then I would say thats a pretty good indicator. In fact, the frequent urination was really my first symptom. My wife used to tease me mercilessly about my tiny bladder

I've had a lot of testing done. Echo cariogram, a stress test, another stress test with imaging, a renal ultra sound, MRI, 2 week holter monitor, tons of blood work. My renin and aldosterone were normal.

It leveled me about a year ago. I was 39 at the time and ended up being bed ridden for about 10 weeks. In hindsight I think I've always had symptoms though. I haven't had any genetic testing done, I just got very, very lucky and just by chance I happened to visit one of the few doctor's in my area that understood the condition and had experience treating it. He recognized the symptoms and sent me on the right path.

I take .1mg of Clonidine just before going to bed, and then I carry some with me at all times in case I get an attack. I was on the patch for a while and I really liked it, but it irritated my skin so bad that I ended up ditching it after I stabled a bit. As for the sodium, I have to be very, very careful with it. I keep a very close eye on my blood pressure and adjust the amount of sodium accordingly. It is very important though because low blood flow is what triggers your kidneys to release renin. Normally the kidneys start releasing renin when you get dehydrated. In my case, the high angiotensin ii levels are from a defect in an enzyme called the ACE2 which is responsible for catabolizing the angiotensin ii. I think its a genetic condition because i have several siblings that have symptoms. I would guess in your case that the abnormally high renin results in high angiotensin ii.

The body has 2 main ways to raise blood pressure. The first is from the renin-angiotensin-aldosterone system, with angiotensin ii being the active blood pressure raiser. ARBS or ACE inhibitors suppress angiotensin ii. The other is norepinephrine, which is primarily triggered by the brain as part of the sympathetic nervous system. The brain can trigger norepinephrine in times of anxiety or from a lack of blood flow to the brain. Norepinephrine also increases your heart rate. High levels of angiotensin ii have been reported to exaccerbate the release of norepinephrine. Beta blockers seem to be hit or miss for reducing the norepinephrine effects. Some POTSies report that they help, others POTSies report that they exacerbate some symptoms. Alpha2 agonists such as clonidine tend to be more helpful if you are experiencing high norepinephrine surges since it suppresses its release instead of blocking its effects. My experience was that a combination of high angiotensin ii, low blood volume, and even a minor amount of activity or anxiety led led to some vicious norepinephrine attacks. My BP would surge to as high as 180/125 when they would hit. If i were a betting man, I would guess that you are experiencing something similar. I would guess that the variance in POTS symptoms depends on how much fluids and sodium you have recently consumed, activity, and anxiety (which of course can vary throughout the day). The problem with an snri if you are hyperadrenergic is that they increase norepinephrine levels. These days, I take losartan, clonidine, a low dosage of an ssri, drink plenty of sports drinks and take a daily sodium chloride tablet to keep myself stable. It's also important to get plenty of anti oxidants because angiotensin ii leads to abnormally high amounts of oxidative stress. If you are male, I would highly suggest getting your testosterone levels checked too.

The renin / aldosterone situation that you mentioned above isnt really an issue with low renin and aldosterone, its more of an issue with an imbalance of renin / angiotensin ii / aldosterone that results in abnormally high levels of angiotensin ii compared to the renin and aldosterone. It's the high angiotensin ii levels that really messes you up. High levels of angiotensin ii can lead to being in a hypovolemic state since it causes your kidneys to stop retaining fluids like they normally would. If your renin is high with an appropriate aldosterone ratio, then it's safe to conclude that you have high angiotensin ii levels too. That would explain a lot of your symptoms.

Couple of questions... What kidney disease do you have? Is your high renin related to your kidney disease or were you dehydrated at the time? Do you happen to know if your renin / aldosterone ratio was normal?

Well, by definition, POTS is defined as an increase in heart rate when standing, but there are many underlying conditions that have POTS as a symptom. It is possible that whatever your underlying cause is could also cause you to be symptomatic after a fall.

The ice coldness is likely from peripheral vasoconstriction, which I think is somewhat common if you experience a high amount of norepinephrine. In my opinion, the bright redness and burning sounds to me like erythromelalgia. I'm not really sure how the norepinephrine swings lead to erythromelalgia, but i have the same issue, particularly in my ears. My feet have been in a varying degree of burning/tingling since my POTS started.

The official diagnosis criteria is a 30bpm increase when standing, but my doctor views that as more of a guideline than a rule. There are a variety of things that can cause a variance in that number throughout the day (anxiety, the amount of recently consumed fluids and sodium, etc) that I agree with my doctor's view of it.

I know what you mean about being in a car. For me, it felt like my brain couldn't process the visual information quickly enough.

Several of the males on here have had abnormally low testosterone (myself included) which can definitely cause extreme fatigue. It might not hurt to get your testosterone levels checked. If thats the case, testosterone supplementation could make a big difference.

I had some wild swings like that. My worst lasted about a day and a half, but usually they only lasted a few hours. In my limited understand, there are a couple of ways that your body raises it's blood pressure. The first is the kidneys activating the renen-angiotensin-aldosterone system when blood flow is low (typically when you're dehydrated). The second is from an activation of the sympathetic nervous system which happens when you are stressed, but also is activated by the brain as a way of increasing its blood supply. When my wild swings were happening that put my blood pressure dangerously high, I'm pretty sure it was from a combination of all of those. Clonidine will suppress the brain's activation of the sympathetic nervous system. It definitely helps me, but I still have had some crazy spikes when while on it. I actually got into a pretty strange cycle where I was on too much clonidine which led to some terrifying symptoms (bradycardia, chest pain, etc) and the fear from those symptoms activated my sympathetic nervous system more than what the clonidine was suppressing. I was also on too much sodium supplementing at the time. All of this caused high blood pressure spikes even while on a high dosage of clonidine. Since it was somewhat counter intuitive it really stumped my doctor. It took a while to get the dosage of everything right, but I eventually did. One thing that helped me a ton was adding losartan as a second blood pressure medicine to suppress the renin-angiotensin-aldosterone system. An anti-anxiety medication has been beneficial too. Clonidine won't help much though if the source is not from the brain - like if a person has a pheochromocytoma.

Clonidine suppresses its release, and beta blockers reduces its effects.