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According to Dr Grubb, sometimes those that are hyperadrenergic don't tolerate beta blockers well. If you find yourself not tolerating them, I would recommend asking your doctor about clonidine. And if you happen to be of the angiotensin ii hypovolemic hyperadrenergic type like I am, losartan can make a world of a difference since it is an angiotensin ii blocker. By the way, the last few hyperadrenergic males that we have discussed have had low testosterone levels (myself included). I personally think it's related to the high angiotensin ii levels shutting down the production of testosterone, but it wouldn't hurt to get that checked out too if you haven't already.

When I was going through my crash, my diastolic bp was always 105+ while standing and it hit 120+ a bunch of times even while lying down. During that time period my eyesight felt blurry and I felt strange pressure in the back of my eyes. It was bothering me so much that I went and had my eyes checked out and my eyesight went from 20/40 a few months earlier to 20/50. My eye pressure also measured really high - which if left untreated could lead to glaucoma as I understand it. After the Losartan and Clonidine got things under control, I went back, and my eye sight was back to 20/40 and my eye pressure was back in a healthy range. Interesting, right?

That's quite a jump in BP. My guess is that's the norepinephrine kicking in to try to keep blood flowing to the brain in through vasoconstriction. I think an interesting experiment would be measuring the difference with compression socks to see if it reduces your bp.

Unfortunately they didn't run my SHBG, but my prolactin was on the very low end of normal range.

In your husband's case, the extreme fatigue could be coming from the low T.

The 195 / 110 bp reading peaks my interest. Have you had bp spikes like that in the past? Do you notice any other symptoms when that happens like becoming abnormally pale, having tingly feet or hands, eye pressure, or vision problems?

Welcome to the forum Elisabeth! I'm so sorry to hear that you have been struggling. 1.5 years is a long time to be bedridden. I was pretty messed up like that too for a couple of months, but I was lucky enough to learn how to manage it. What happens to your heart rate and blood pressure when you stand?

I have thought that it was actually the other way around for those who are hyperadrenergic where the increased norepinephrine levels increased the body's metabolism.

Congrats on the pregnancy!

I have had somewhat similar episodes. With me, it seems like anything that triggers norepinephrine can end up triggering a lot more than it should. So activity is one trigger, but anxiety can trigger an attack as well. When I am feeling hyperadrenergic, I keep a close eye on my blood pressure and if it gets too high I take some clonidine to get it back down.

Interesting question. My guess is that just because there is bulging veins doesn't necessarily mean that there isn't vasoconstriction. Perhaps the bulging occurs because the arterial force in the feet caused by gravity is greater than the vasoconstrictive force?

Welcome to the forum Kristina

100 mg. I actually jumped from .1 mg of clonidine to .4 mg on the same day that I started in the losartan (which was too much for me by the way), so I'm not exactly sure what immediate benefits came from the losartan vs the additional clonidine. How is your husband responding to the treatment?

Very interesting kal, thank you for the update.

Symptoms sound like it could be what Julian Stewart calls low flow pots. Have you been tracking her blood pressure by chance?

A lack of blood to the brain is i think the most common cause of the brain fog for pots, but there are a few others as well. Oxidative stress can also impair mental state and can be associated with pots. My endo told me that low T can cause brain fog too. You probably know this already, but dysautonomia is an umbrella term that refers to a dysfunction of the autonomic nervous system, and POTS is one type of dysautonomia. The term POTS is really more of a description of the main symptom rather than explaining the underlying cause. I think that using the term POTS to describe our illnesses would be a little like if we just said that we had a cough when feeling ill since there are lots of different underlying causes why one might have a cough. You can address the cough symptom directly with some cough medication, but the cough goes away once the underlying issue is resolved. So in your autoimmunity example, I think that it is fair to assume that dysautonomia goes away if you were able to resolve the underlying autoimmunity issue. Unfortunately, the treatment of POTS is mostly focused on addressing the symptoms at this point. Beta blockers are often prescribed because they are known to reduce tachycardia and blood pressure for most people, but sometimes those with POTS dont tolerate them for the reasons that you describe. You will probably want to keep a close eye on your husband's blood pressure while he is on them. For temporarily relief of symptoms, just laying down and trying to relax is about the only thing that has worked for me.

I wish him all the best. Please keep us posted on how he responds to his treatment.

I'm so sorry that your daughter is struggling. The light sensitivy, anxiety, and the cold hands and feet could be signs of hyperadrenergic activity. Does she get pale and does her blood pressure spike when symptomatic?

My echo results showed mild lvh and mild diastolic dysfunction. I think that one cause of both is just high blood pressure, which is what my doc told me was most likely my cause. Have you had high blood pressure by chance?

Here's how my pots onset: I was just at work one day and out of nowhere I got really woozy to the point where I felt like I was going to pass out. A few minutes later my heart started pounding at a really intense rate. I went to the ER but by the time I got there things had calmed down somewhat, but my blood pressure was about 150/105 with a supine heart rate of about 110. They did an EKG and did some blood work, but didnt notice anything else wrong. Over the next 2 months or so, I was practically bed ridden. Intense brain fog, pre syncope, constant eye pressure, scary blood pressure spikes from any activity or anxiety, red ears, pale skin that people described as yellow or gray when I was symptomatic. I went to a cardiologist, an endocrimologist, a couple of different family doctors, and had a holter monitor, 2 echocardiograms, 2 stress tests, an MRI, a renal ultrasound, and lots of lab work that turned up nothing. My cardiologist thought it was just anxiety. I also went to the ER a couple of times - once because my hands and feet were so tingly and they were going numb after I attempted to mow the lawn, and another because my blood pressure got up to 180/120. I got lucky that I found a family doctor that had treated a lot of pots patients. He diagnosed me after drawing my blood after laying down for 10 minutes, then again after standing for 10 minutes. My norepinephrine levels were really high during the standing blood draw. He then sent me on the right track. It took a few months of playing around with the sodium and clonidine dosages before I got back to being stable. I'm not really sure why it started, and I am still have some issues like tingly hands and feet and the occasional wooziness and norepinephrine attacks, but when these things happen, but now that I understand what is happening and why, I know how to handle them. Studying Julian Stewart's publications and studying the renin-angiotensin-aldosterone system made a huge difference. My pots doesn't prevent me from doing anything that I want to do anymore. I am back to work, I do yardwork, go to the kids soccer games, etc. I haven't noticed benefits to my pots symptoms from the testosterone replacememt, but I sure have noticed that I have a lot more energy and just generally feel better. My recommendation would be to ask the doc that you are visiting next week to do the lay down / standing up norepinephrine blood draws. Please let me know if you have any other questions. Good luck with that appointment next week and please keep us posted.

Hi Finnmin, welcome to the forum! Your husband's experience sounds exactly like mine. I am a male and I had the same symptoms including the low testosterone. Increased heart rate and blood pressure while standing was a problem for me, but stress has been even worse. My hands and feet are even still chronically tingly / burning, and they are often discolored with bulging veins. My face would get extremely pale skin when I would get symptomatic. I am nearly positive that I have what Julian Stewart calls "low flow pots". It is basically a dysfunction of the renin-angiotensin-aldosterone system that results in hypovolemia and chronically high levels of angiotensin ii. Ang ii causes a lot of different problems. It is a very potent vasoconstrictor, which causes high blood pressure and is probably what causes the issues with my hands and feet due to peripheral vasoconstriction. Stewart notes that ang ii leads to oxidative stress and increased levels of norepinephrine. Angiotensin ii could explain the low testosterone since the leydig cells in the testes have ang ii receptors that can stop the production of testosterone. I came across some research (Karin Viena Weisshemmer et al) where they tested this this theory in male rats (http://www.sciencedirect.com/science/article/pii/S0018506X12001377). I detailed out what I did to get back on my feet again in this post here: http://www.dinet.org/forums/topic/28157-hormones-and-pots/#comment-260166

Hmmm... Maybe try cooking with PANS instead? (I know, I know, that was a lame joke)

Welcome to the forum sgreen54. There are a ton of different underlying causes that present themselves with similar pathologies, so my opinion is that the 30 bpm number is more of a guideline than a hard rule. Both myself and my sister's hr fluctuates like that too upon standing.

Same with me. I didn't notice any sleep benefits from it. Melatonin has helped me fall asleep.

Interesting. When my doc checked my adrenaline levels he had me lie down for 10 minutes before drawing my blood, then he had me stand for 10 minutes before drawing my blood again. My lying down results were relatively uninteresting, but my standing results showed my norepinephrine levels to be really, really high.