My POTS kicked in August of 2016. At the time, I was trying to be a bit healthier that I had been by cutting out soda and eating better. I think that the first symptom was that I had to pee a lot more often. I remember that my wife kept making fun of my tiny bladder during that phase. Then the light headedness and tachycardia started slowly increasing over the next couple of weeks. In September it really hit me hard. I was in my office at work and nearly passed out, which was followed shortly after by a super intense adrenaline storm. I went to the ER complaining of chest pressure and dizziness, but I was feeling a bit better by the time I got there. My blood pressure was high and I did in fact have tachycardia. They also took an ekg and some basic labs that came back normal and he told me that he thought that it could possibly be either SVT, AFib, or just acid reflux. He told also told me that I should set up an appointment with a cardiologist.
The next day I called and set up appointments with a general practitioner and a cardiologist, and literally the way I chose them was that I called the offices that were nearest to my house and asked for the doctors with the next available appointments. I got in to see the general practitioner the following day, and it turns out that he was one of the most experienced POTS doctors in Utah and actually dedicates 1 day per week to treating POTS patients. I still can't believe how lucky I got by finding him the way that I did. He said that he wanted to see the outcome of the cardiologist appointment before he did anything. After visiting him, he said that he wanted to see the results of the cardiologist before he did anything else.
During the next week before my cardiologist appointment, I started taking my blood pressure regularly and I noticed that I would get some crazy swings. One day when I was worried about a problem at work that I couldn't get there to address, I took my blood pressure and it came in at 180/125. This was before I knew much about blood pressure and I didn't realize that my blood pressure was high enough that I should have called 911. I also tried going back to work in this week, but I only lasted one day back. My co-workers were all extremely concerned about how pale I was, and the tachyardia and light headedness was more than I could handle.
Based on my description of what happened in my office the previous week, the cardiologist assumed that I had SVT, so he put me on a calcium channel blocker, a 2 week holter monitor at the same time, and scheduled me for a echocardiogram. My blood pressure was still crazy during those 2 weeks, but the calcium channel blocker helped keep my blood pressure from crisis levels. The results of the holter and echo didn't show anything useful other than bouts of tachycardia, fairly frequent skipped heart beats, and that my heart was showing signs high blood pressure. I asked the cardiologist about the rest of the symptoms and he said that it just sounded to him like anxiety and that I should take some anti-anxiety meds for it.
I then went back to the GP the next week during one of my adrenaline storms and he took my pulse while lying down and again standing up. He didn't say anything to me at this point other than he wanted to run a ton of labs. The most interesting test was the lying down vs standing catecholamines blood draw which measured my norepinephrine at about 250 while lying down and about 850 while standing up. I also had low testosterone. After getting the results a week later, had me come back into his office where he diagnosed me with hyperadrenergic pots. He told me to start the mediterranean diet, to stop taking the calcium channel blocker, to start taking .1mg of clonidine, and to start regularly exercising. Unfortunately, he didn't mention anything about salt, and he printed out some documentation on the mediterranean diet that included going salt free. About a week later, all of my symptoms were much worse. I ended up in the emergency room again after constantly being on the verge of passing out and blood pressure that kept repeatedly spiking to crisis levels. I also was having some strange tingling in my feet, legs, hands, arms, and face. The ER did an ekg, an MRI, and a bunch of lab work but again didn't find anything.
The next day I went back to my GP where he then told me that he messed up the print out and that to go up to 8Gs of salt supplements per day, about half of which coming from sports drinks and the rest coming from sodium chloride tablets. He also put me on 100mg of Losartan, .2 mg Clonidine patch, .2mg of Clonidine pills, and zoloft. This was obviously a huge jump up from where I was at and a lot of new meds to take on at a single time. Things got really confusing at this point. My brain fog went away and light headedness went away, but my blood pressure got extremely high constantly - like 150-160 / 100-110, and any activity or anxiety would put me into crisis mode. That dosage of Clonidine gave me bradycardia and chest pains too. My sleeping heart rate at this point came all the way down to about 40.
I went to a second cardiologist at this point who had me do a stress test. The first round that I did with him showed what he said were some anomalies so he told me to start taking a daily aspirin and that he wanted to do a second stress test combined with an echocardiogram. I cut back significantly on the salt after the stress test since the cardiologist indicated that I might have angina, so by the second stress test everything came back normal. My blood pressure started coming back down to reasonable levels as well.
I went back to my GP, explained everything that had happened, and he basically told me at that point that I needed to play around with the Clonidine and salt dosages until I found what worked for me. He also sent me to do a renal ultrasound to check for any abnormalities with my adrenal glands. That ultrasound didn't turn up anything and they tried to get me to get a renal cat scan, but my insurance denied it so I never had it done.
I was about 2 months into this situation by now and I started playing around with the dosages, but things really clicked for me when I came across Julian Stewart's research. Things started to make sense particularly when I realized that his classification of low flow POTS included pallor. After realizing that my hyperadrenergic pots was caused by an ACE2 deficiency, I started reading everything that I could find on the ACE2, the RAAS, the effects of Angiotensin II, and norepinephrine. Understanding how all of these work helped me realize exactly what was happening inside my body.
About a month later, I was taking .2mg of Clonidine, 100mg of Losartan, and 3-4 grams of salt, which is when I was finally healthy enough to go back to work, even though I still wasn't in a very good state. I was fired a few weeks later and when I got home that day, I took my blood pressure and it was 180/120. I popped an additional .2mg of Clondine, and my blood pressure came back to reasonable levels within 30 minutes.
I continued to play around with the dosages for the next few months
until I settled on 1-2 grams of salt all coming from sports drinks,
100mg of Losartan, 25mg of zoloft, testosterone supplements, and .1mg of Clonidine per night, and I also would take an
additional Clonidine if I felt myself surging.
What I really discovered though through trial and error is that I have to keep my blood volume high by consuming more salt and fluids than my kidneys process. Losartan is a must, and Clonidine is amazing for suppressing the adrenaline storms.
It has now been nearly 2.5 years since this started for me and this condition barely affects me now as long as I stay consistent with my treatment. I feel extremely fortunate that I was able to find a good doctor as quickly as I did that helped me understand it and learn how to treat as I did as I know that most people that become affected by this condition aren't as lucky as I have been.
