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haugr

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Everything posted by haugr

  1. @WearyTo elaborate on my above statement, the beta receptors do indirectly increase blood pressure by having the heart pump faster and stronger while the alpha receptors also increase blood pressure by constricting arteries. I think that alpha receptors are generally less efficient than the beta receptors, which is why a beta blocker for a normal person decreases blood pressure instead of raising it. My understanding of the reason why someone with POTS can experience the paradoxical effect on beta blockers is because being on beta blockers ends up increasing the amount of adrenaline that your brain triggers as your brain tries to keep a sufficient supply of blood flowing to it. So, if you needed X adrenaline to keep a sufficient supply of blood flowing to the brain from a combination of heart rate increase and artery constriction, on beta blockers you might need X+Y to accomplish the same goal from the blood pressure increase from artery constriction. Non potsies dont have the X+Y problem since the reason for the adrenaline isn't from a lack of blood to the brain. Their adrenaline stays roughly at X. That's my understanding of it anyways.
  2. It gave me bradycardia when I took too much - which came with chest tightness and what felt like trouble breathing, but I never experienced any throat tightness.
  3. It's hard to describe, but it kind of feels like a cross between a dull burning sensation and that feeling that you get when a limb falls asleep. The burning and the tingling have swings in intensity too.
  4. It seems as if my POTS attacks from nearly 2 years ago have left me with permanent neuropathy in my feet and a bit in my hands. I never had neuropathy prior to POTS, but it has not gone away ever since my first major attack even though my other symptoms have been under control for over a year now. I'm curious if anyone has experienced anything similar.
  5. You probably know this already, but your body has main 2 ways to raise blood pressure. The first is through the RAAS system, which usually triggers when the kidneys detect low blood flow, like when you get dehydrated. When the RAAS triggers, it causes your blood pressure to rise and it causes your kidneys to retain fluids. The second way that your body raises blood pressure is by activating the sympathetic nervous system, which can be triggered cognitively through anxiety or it can be triggered by your brain when it isnt getting enough blood flow. When the sympathetic nervous system activates, it also increases heart rate as opposed to the RAAS. If you are peeing an abnormal amount combined with really high blood pressure, that's a pretty good sign that your RAAS could be dysfunctional. I have read though that frequent urination also comes along with diabetes, although I dont know the underlying cause for that. Lisonopril targets the RAAS by the way. If clonidine also helps, then that's a pretty solid sign that you also have an issue of your brain activating your sympathetic nervous system. If your blood pressure rises and your heart rate increases when you stand, I think that's even more confirmation that you aren't getting enough blood to your brain. So, in my internet non-medical arm chair opinion (that you should never listen to), I think that you have the right meds to deal with your attacks. Now it's just a matter of figuring how how to keep your blood volume high enough to prevent your kidneys from activating the RAAS and your brain from activating your sympathetic nervous sytem so that your attacks can be minimized. Are you doing any salt supplementing or have you been increasing your fluid intake?
  6. Yeah, my BP was all over the place. I honestly thought I was about to die at any moment pretty much every day. I am mostly better now though.
  7. That pretty much sums up what my symptoms and experience was like too, except maybe the pain that went up all the way to the neck. I would get tingly up my arm though. POTS sucks. I dont know if this will help, but i posted my experience and learnings here: http://hyperpots.blogspot.com/
  8. 1. My consistent physical symptoms when I was symptomatic were an abnormally pale face, cold hands and feet, dialated pupils, tachycardia, and I felt super amped up. Sometimes i would get a tingling sensation in my hands, feet, arms, and in my face near my temples. Sometimes i would get sweaty too. 2. I never took an alpha blocker. Clonidine was my life saver. My diastolic would always hit a crisis state before my systolic, so I would take clonidine when my diastolic got to about 110.
  9. My old fitbit that i had to monitor my hr never was very accurate. I ended up getting a pulse oximeter and a chest hr monitor strap that worked a lot better.
  10. I think that happens with a lot of POTSies. What happens is that adrenaline can react with beta receptors in the heart to increase heart rate, or they can react to alpha receptors to increase blood pressure. If your beta receptors are blocked by a beta blocker, then the adrenaline will bind to the alpha receptors to raise your blood pressure. An alpha/beta blocker like labetalol might be more helpful. Or clonidine might help since it suppresses the release of adrenaline.
  11. You REALLY need a way quickly to deal with those 220/110 spikes. Those could be doing real damage. My doc had me pop clonidine when I went into hypertensive crisises. It was a total life saver for me. Clonidine is a quick acting and a relatively short lived med that works by suppressing the release of norepinephrine, but it only helps if your blood pressure spikes are caused by your brain activating the sympathetic nervous system. The RAAS is the system in your body that regulates blood volume. Basically, there is a known condition that can cause hypovolemia from having a dysfunctional raas, leading to hyper pots. POTS is specifically referring to being symptomatic while upright, but remember that POTS is essentially just a symptom of an underlying problem. It is completely within the realm of possibility that your underlying condition could also be causing you to have attacks while suppine. I can confirm from experience that this is true of a raas dysfunction. The smallest amount of anxiety, even while suppine, would cause me to enter hypertensive crisis states when combined with the high levels of angiotensin ii from the raas dysfunction. I am under the impression that mcas can be diagnosed by a urine test while symptomatic. At least my doc had me collect urine while I was symptomatic when he was trying to diagnose me.
  12. I think that a tilt table test can be used to diagnose POTS, but not whether you are hyperadrenergic. I believe that the standard for diagnosing hyper pots these days is by comparing catecholomines in the blood stream between suppine and standing positions.
  13. No, that doesn't rule out dysautonomia. Dysautonomia is just an umbrella term to describe a dysfunction of the autonomic nervous system, which is a system that is responsible for a LOT of what happens with your body. My opinion is that you are barking up the right tree. Your symptoms seem to be consistent with what i know about MCAS.
  14. I used to get it too. I never did get an answer from the doctors, but my assumption now is that it was happening from extremely high vasoconstriction.
  15. My understanding of pupil dilation is that it happens in low light, activation of the sympathetic nervous system, or from a neurological or eye disorder. My assumption was that your eye issues are from an activation of the sympathetic nervous system considering your other symptoms. That's interesting that it didn't show up in your labs.
  16. Interesting. Were you in your wired state when you had the catecholomines done?
  17. I'm curious what you mean by bladder shrinkage. Does that mean you urinate frequently? And can you describe your fatigue?
  18. The eye symptoms are consistent with high norepinephrine levels. Beta blockers will mask tachycardia if you have POTS. You should take your blood pressure when you are in one of your wired states and compare that to when you are in a crashed state. A couple of other symptoms to look for to identify a norepinephrine surge while wired would be abnormally pale skin and cold extremities.
  19. Blood pressure isn't exactly a constant, even for healthy people. Your body has 2 main mechanisms to raise blood pressure - either through the activation of the sympathetic nervous system, or from an activation of the raas. The raas gets activated when the kidneys detect low blood flow (like when someone typically gets a bit dehydrated), which causes your blood pressure to rise, your kidneys to retain fluids, and it makes you thirsty. With a raas dysfunction, that process doesnt work properly, which can cause blood pressure to rise, but not properly retain fluids. The brain can compensate for the low blood volume by activating the sympathetic nervous system in order to keep enough blood flowing to the brain. The activation of the sympathetic nervous system (specifically norepinephrine) is usually what people with hyper pots describe as the surges. So, to answer your question, it is completely normal for someone with a raas dysfunction to experience some large blood pressure swings throughout the day depending upon that person's hydration/ blood volume level. Anxiety can also play a big factor too since the combination of the sympathetic nervous system and the raas can lead to some scary intense blood pressure spikes. It is definitely worth getting your renin-aldosterone ratios checked, but it is worth noting that an ace2 deficiency won't show up as abnormal in those test results. An ace2 deficiency has normal renin and aldosterone, but high angiotensin ii. As far as I know, there isn't a common test thats labs have availabke to them to test angiotensin ii levels. The most important thing to do if you have a raas dysfunction is to make sure that you are ALWAYS extremely well hydrated and that you are consuming plenty of electrolytes. Keeping your body in a state where is doesnt need to activate the raas is key. For what it's worth, the ace2 deficiency is what I have. Losartan and increased fluids and salt got me back on my feet again. Clonidine was a life saver too, especially when hitting hypertensive crisis levels.
  20. Your symptoms sound just like mine. The frequent urination is probably a sign of a dysfunctional raas, which basically means that you aren't retaining fluids like you should. I posted my learnings about it on my blog http://hyperpots.blogspot.com
  21. I was extremely messed up for a while there too. Mine started with a similar episode while I was at work. I got extremely light headed, felt like I was going to pass out, then the tachycardia kicked in to an extreme degree as the panic hit. I ended up at the hospital that day and then spent the next 2 and a half months bedridden thinking that I could die at any moment. I was lucky and found a great doctor that pointed me in the right direction. I am doing great now though, I just had to learn how to manage it. When I was symptomatic, I noticed that some of my worst cases were caused by anxiety. In addition to blood pressure and heart rate spikes when standing, I noticed that even what normally would have been minor anxiety would cause my blood pressure to hit dangerous levels. After doing some research, i discovered that my symptoms fit with what Julien Stewart classifies as low flow pots. Losartan, clonidine, and increased salt and fluids got me back on my feet again. Hang in there. It sucks, but you'll figure it out. It just takes time to find the right combination.
  22. There can be. One of the known causes of hyper pots is a genetic abnormality with the norepinephrine transporter, although I think it has only been officially diagnosed in a couple of people. While there isnt much evidence that I am aware of to support that other known causes are genetic, I happen to think that there could be a genetic component at play because my siblings show symptoms of having the same raas dysfunction that I have been diagnosed with that causes my hyper pots.
  23. An overactive bladder can be a sign of having a dysfunctional RAAS, which is known to be one of the causes of POTS.
  24. 2.5 hours is a very long time, I would definitely get that checked out right away. The American Heart Association recommends calling 911 when your systolic bp is 180 or higher, or when your diastolic is 120 or higher.
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