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I've never had my feet turn red like that, but like Sarah, my feet have had that pins and needles sensation non stop since my hyper pots kicked in. A little bit in my hands too. Kal, your condition sounds brutal. Im curious if your doctors have checked you for MCAS?

Dang Kat, I'm so sorry. This condition sure can be a life destroyer. Have you gotten the results back from the adrenaline and auto immune yet, or are you still waiting on it? And I'm curious, did they do the adrenaline tests while you were standing?

Welcome to the forum BuffRock! So sorry you are dealing with this. I hope your doctors can find some answers. In my opinion, in addition to tracking your heart rate, blood pressure can be a helpful data point too.

Hey Kat, I'm curious how you have responded to the propranolol so far.

I was getting that in my ears for a while. They would turn bright red, felt hot to the touch, and felt like they were on fire from the inside.

Do you have hyper pots by chance?

I'm sorry, I hope things get better. I wish I could think of something to help. Keep us posted.

@kalamazoo keep us posted on this. I am extremely curious to see if you end up concluding that propranolol is in fact making things worse for you and if something else works better.

@IAMERROR94 have you been doing any better?

I take a low dose of zoloft and I think that has been helpful, although it really messed me up the first few days I was on it. I tried Bupropion, but I didn't respond well to it since I am hyperadrenergic and SNRIs increase norepinephrine levels.

@kalamazoo There are multiple subtypes of hyper pots. One of them has low blood volume and needs additional salt. The other subtypes should be avoiding additional salt. @songcanary I'm so sorry that things have been rough for you. Your blood pressure doubled??? How high did it get and how high is it normally?

I am nearly positive that the underlying cause of my hyper POTS is from an ACE2 deficiency. For some background, the system that regulates blood volume is called the renin-angiotensin-aldosterone system (RAAS). When the kidneys detect low blood flow or low sodium levels (for example, when you are dehydrated), the kidneys release renin into the bloodstream. Renin causes the release of a hormone called angiotensin I. Angiotensin I then gets converted to angiotensin II through an enzyme called the Angiotensin Converting Enzyme (ACE). Angiotensin II then triggers a variety of activity in the body. It is a very potent vasoconstrictor that causes your blood pressure to rise. It also triggers the release of aldosterone from the adrenal glands, and the aldosterone is responsible for making you feel thirsty and it also causes the kidneys to retain sodium, thereby increasing blood volume. Most of the angiotensin II in your system gets catabolized to lesser forms of angiotensin (angiotensin 1-7) through another enzyme called the ACE2. The other interesting thing about this system is that when the kidneys detect a certain level of angiotensin II in the blood stream, it will stop producing any more renin even if the blood flow is low. It does this of course because if it didn't, your body could kill itself by overproducing angiotensin II thereby raising your blood pressure too high. Wikipedia's article on RAAS is very informative if you want to learn more. Julian Stewart has published some articles on a version of hyper pots that he calls "low flow pots". He found a defect in the ACE2 that results in chronically elevated levels of angiotensin II. The chronically high levels of angiotensin II cause havoc on your system. One symptom is chronically low blood volume since your kidneys aren't releasing enough renin due to the inhibitory feedback loop of the high angiotensin II levels. Low blood volume of course makes it so that you aren't getting enough blood flow to your brain when you are upright - which could certainly explain brain fog. Julian Stewart states that angiotensin II can increase the release of norepinephrine, which is the key elevated hormone in those that are hyperadrenergic. High levels of norepinephrine also causes havoc on your body. High levels of anxiety, high blood pressure, pale skin, vision issues, tachycardia, etc are all side effects of high levels of norepinephrine. My experience is that there are multiple things that can trigger norepinephrine attacks - anxiety being one, standing when my blood volume is low is another. I came across this article that relates high levels of angiotensin II to low testosterone levels in males. Basically, the leydig cells in the testes have angiotensin II receptors that when activated stops the production of testosterone. http://www.sciencedirect.com/science/article/pii/S0018506X12001377 Another problem that high levels of angiotensin II can cause is oxidative stress, which can also lead to fatigue, brain fog, vision problems, etc. Here are some good links to Julian Stewart’s research: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511479/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3810291/ http://www.prohealth.com/library/showarticle.cfm?libid=17890 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511483/ So, there are a few things that I do to manage this. First, I take clonidine to suppress the release of norepinephrine. It took a while to figure out the correct dosage and it had some weird side effects at first. You can read more about that if you want in my post in the recent clonidine thread. Clonidine is also used to lower blood pressure. Second, I take Losartan. Losartan is an angiotensin receptor blocker (ARB) which lessens the effects of angiotensin II, and is also typically used to lower blood pressure. Third, I take a low dosage of Zoloft (SSRI) to keep my anxiety in line since anxiety has the potential to trigger norepinephrine attacks that exceed what my dosage of clonidine suppresses. I actually tried Bupropion (SNRI) for a week or two before switching to an Zoloft, but that made things much worse for me since SNRIs increase norepinephrine. Fourth, I have found that I have to regulate my blood volume myself since my system can’t. Increased fluids and sodium is they key here, but I have to be extremely careful not to take too much because too much sodium can lead to extremely high blood pressure spikes during a norepinephrine attack. I have found that Propel, Gatorade, nuun tablets, and/or sodium chloride tablets are a good option. Also, I don’t need to take nearly as much as those with the regular form of POTS do. 1 or 2 additional grams of sodium per day in addition to my regular diet seems to be enough to keep my blood volume high enough to clear out my brain fog for me to function. Fifth, I take daily vitamin C supplements for their antioxidant effect to combat the oxidative stress caused by the Angiotensin II. Sixth, I am on a daily topical testosterone replacement. There are different underlying causes of hyper pots, and there could be other reasons for your low T and your other symptoms, so please see doctors before trying anything that I mentioned in here. I mention all of this because the ACE2 deficiency is one possibility that could explain your symptoms, and I know how hard and frustrating it is to find answers. If you haven’t done so already, I recommend asking your doc to take your lying down and standing catecholamines to see if your norepinephrine levels are excessively high when upright to confirm whether or not you are hyperadrenergic. Also, it would probably be valuable to see an endocrinologist to see if there is another possible explanation for the low T. I have been extremely curious if other males with this condition had low T, so I am very glad that you posted this question. I empathize with what you are going through. I was bedridden for a couple of months just late last year, but I’m quite stable and functional now. Hang in there and please keep us posted.

Hey Kdub, I'm a male and my testosterone is very, very low as well. I visited an endocrinologist about it, but the endo couldnt figure it out. Through a lot of research of my own though, I think I have discovered how it is linked to my hyper pots. I would guess that there is a good chance that you have the hyper pots subtype that i do based on what you just described and from your other thread. I'll type it up a bit later today in this thread and describe exactly what I did to get myself back on my feet again.

Blood pressure and your concern regarding not being able to feel your pulse should be very closely related. Blood pressure is the measurement of the force against your arteries. The top number is the force during beats where the bottom number is the force between beats. Most blood pressure cuffs measure blood pressure at the pulse point along the brachial artery near your inner elbow. When your blood pressure is 160 - 190 (which is really high by the way) I'll bet that your pulse is easier to find when your blood pressure is running lower. The point I am making is that measuring your blood pressure should be a better gauge. And you should really work with a doctor about getting that blood pressure down into a healthy range.

Yeah, activity is a trigger of mine too. I don't recall heat ever being a trigger though.

Well, they have a protocol that they go through which identifies the common emergency situations, but you should trust your instincts. For what it's worth, I know exactly how you feel. To know that your body is behaving differently and not knowing the reason is absolutely terrifying. I thought I might have been dying too. ER trips were a regularly occurrence for me until my doc and I figured it out - which took time. An at home blood pressure machine or a trip to your grocery store to check your blood pressure could be a nice way to calm the nerves down if it shows that your blood pressure and heart rate is normal when you feel your pulse is too weak. Please hang in there.

My cousin is an ER nurse, and she once told me that patients are either horses or unicorns. A horse is a patient where the symptoms are easy to identify and a unicorn is a patient where the symptoms seemingly don't make sense. Dysautonomia unfortunately often falls into the unicorn category where there aren't many doctors that are experienced with it and that understand it. If you feel as though something is wrong, I would suggest that keep looking until you find a doc that you trust and can explain to you what is happening. I went to 10 different doctors, and only 1 understood what was happening to me.

Hang in there. I'm so sorry you are going through this.

My report was 10 pages or so. Mostly EKG charts of the button presses with their time stamps. Then there was a summary page that was the cardiologist's conclussions.

Hi Fall, My experience with clonidine has been an interesting learning experience. I initially started on .1mg, but it wasn't enough, and like Sarah mentioned, I definitely noticed how short acting it was. After I had a few hyperadrenergic attacks where my blood pressure got up to 180/120, my doc bumped the dosage up to .4mg where .2mg was from pills and .2mg was from the patch. That ended up being too much for me though as it gave me bradycardia. I ended up slowly cutting back to where I was only on the .2mg patch, which was a relatively stable place for me for a while, although the patch really irritated my skin and I felt cold all time. The day I lost my job though, I had another hyperadrenergic attack that shot my blood pressure back up to 180/120. I immediately took one of my .2mg pills to get my blood pressure back down, which worked within 30 minutes or so. What I learned is that with me, my anxiety has the potential to trigger sympathetic activity that exceeds what a lower dosage of clonidine suppresses, but taking a higher dosage on days where my sympathetic activity is low makes me feel lathargic and cold. Even though I still have the .4mg prescription, most days I only take .1mg split over 2 dosages during the day, one of which is right before I go to bed because it helps me sleep. On days though where my anxiety is high, I will take a little bit more. If sleep is your biggest issue, I do think that clonidine can be your friend. As I understand it, clonidine will make you sleepy regardless of whether or not you are hyperadrenergic. If I understood my doc correctly, adderal can help because it binds to the same receptors that the norepinephrine does, thereby reducing the effects. Clonidine though helps because it suppresses your body from releasing norepinephrine in the first place, as long as the origination of your excessive norepinephrine is triggered from the brain and not from something like a pheocromocytoma. I hope this helps and I hope you get feeling better.

I think that is always a good idea to get multiple doctors opinions when dealing with health issues, especially if you are uncomfortable with what one doctor told you. Now I could be wrong, but it makes sense to me that a weak pulse would be concerning if your blood pressure was low. I would suggest checking your blood pressure when worried about pulse strength since pulse strength is subjective and not measurable. But of course you should verify that with a doctor as that is just my untrained opinion.

Like I've mentioned in other threads, I have been lucky to have been able to get to stable enough where my hyper pots doesn't negatively affect my life very much any more, but one thing that still hasn't gone away is the persistent tingling sensation in the bottom of my feet and the palms of my hands that never goes away. It started the day that my hyper pots kicked in 7 months ago. I have had an MRI that came back clean, and I have done a fasting glucose test that came back within normal ranges - although I do show insulin resistance. I'm curious if those with hyper pots also experience this.

A lot of us get them. I was told that infrequent ones aren't worrisome, but like the others mentioned, a Holter monitor would be a good way to rule out any problems.

I can definitely relate Kat. That does sound like what I deal with. There are probably other explanations, but the vision issues could be related to hypovolemia, and the anxiety driven tachycardia and blood pressure spikes could indicate an overproduction of norepinephrine and/or norepinephrine not clearing properly. If so, one explanation could be what Julian Stewart describes as low flow pots. I would suggest asking your doctor to check your renin to aldosterone ratios, Angiotensin II levels, and your supine vs standing catecholomines.

I did the 2 week monitor. The doctor didn't get the results until it was over. I think it may have automatically sent things when it detected symptoms because my results showed some heart rate increases during times when I was exercising and I was pretty sure that I didn't push the button. But I think that it is helpful for them to see the button presses so that they can tie charts to when you are experiencing symptoms. When he reviewed my results with me, he was mostly focused on my chart during the button presses.