Hyperadgenergic POTS

What is hyperadgenergic POTS?

So, in order to explain hyperadgeneric POTS, I’m going to start by defining POTS. By no means am I an expert, I recently became diagnosed and I’m going to document my life with this type of POTS as well as try to inform about this dysautonomia as much as I can.

POTS stands for Postural Orthostatic Tachycardia Syndrome and is a form of dysautonomia – disorder of the autonomic nervous system – this affects the circulation (blood flow). This part of the nervous system regulates functions we don’t consciously control like blood pressure, sweating, heart rate and body temperature.

Now, hyperadrenergic POTS is a type of POTS that’s associated with elevated levels of norepinephrine – the stress hormone. Basically, what that means is you have high amounts of adrenaline and your fight or flight response is pretty active.

My Story

You may be asking, how do you get diagnosed with this? Well, it wasn’t easy and took a long time, in my case anyway. So, let’s dive into it.

I started having seizures when I was 2 years old when I would get hurt (keep in mind, I’m now 24 years old). They weren’t very frequent and when my mom took me to the doctor for them, the doctor wasn’t too worried about it. Fast forward a few years and my seizures stopped, but I was having issues with syncopes (passing out spells). These would happen when I would get hurt, overheat, have a fever, etc. and they pretty much stopped around 13 years old for a few years – besides the occasional one maybe every couple years.

Around 18, I started noticing my heart rate would increase pretty high – I could feel it happening and I would get overheated, had trouble breathing, trouble focusing, and I would sometimes pass out from these episodes. So, thinking it was anxiety, I went to the psychiatrist where I was diagnosed with generalized anxiety. This seemed like the logical thing. I recently started college, was struggling being away from home, the extra workload and some pretty tough college classes. So, the psychiatrist prescribed Lexapro. At first, there was no change. Symptoms were just as bad, if not worse, so he upped the prescription. Which I did not react well to. I was constantly sick, had horrible cramps, symptoms were way worse and I started to become depressed. I was desperate to get off the Lexapro. I eventually went off that medication and I decided that I was not going back to that doctor. For the rest of that year, I decided to not try any other medications and tried to deal with the symptoms.

The following year, however, I started to think that I should maybe go see someone else. So, I found a new psychiatrist and started the journey again. I tried so many different anxiety medications, anti-depressants, you name it. I was taking Xanax to control the episodes as they all thought it was anxiety and panic attack disorder. Since I had to take Xanax so much, I was constantly sleeping and I started to have memory problems.

My junior year of college. This year I was at my lowest. I recently became the VP of Marketing for the sorority I was apart of – which you would think would be an amazing opportunity. Well, in my experience it wasn’t. I had some really great people apart of my marketing committee, but this one girl really made things difficult (see next blog post for more on this year of my life). I ended up in the emergency room on a couple of occasions from panic attacks (so we thought). I wouldn’t remember anything that happened during these episodes. I would completely black out and finally would come to once I started to calm down a bit. Very scary time for those close to me as well. I also was seeing a therapist who, at my last appointment, screamed at me for missing one appointment. She said I needed to be more responsible and take accountability for my actions. In the place I was in, this broke me. I was struggling and someone who was supposed to be helping me, spent 30 minutes yelling at me and telling me how horrible I was for missing an appointment. I had to also pay a fee for missing that appointment and I decided after that visit I was done with therapy.

After the last time I was in the emergency room (I was taking Zoloft and Xanax at this time and maybe one other medication, I can’t fully remember). I decided again to stop the medication and stop going to that psychiatrist. Nothing was working and I already tried around 15 different medications. I felt lost and didn’t know what to do. So, I decided to do nothing.

Again, I waited a few years and my syncope episodes were becoming more and more frequent. It was at that time that I decided once again to go to the doctor, however with my experience with my last psychiatrist and therapist (will talk about in a later blog) I made the decision to see my primary doctor’s nurse practitioner and just talk about everything wrong – anxiety, syncope episodes, everything. I told her my previous experience with psychiatrists, the therapist and medications. She told me that she would try her best to figure out the best plan of action and believe me, she was amazing and very thorough and always made sure I was okay with the medications, checked in every couple weeks to see if I was having bad reactions, etc. However, the medications only made a dent in my anxiety symptoms. We also worked on getting workups in neurology, cardiology, had numerous blood tests, MRIs, EKGs, etc. I had so many tests done to see why I was passing out and why my heart rate would go so high. Everything looked normal though.

As for the anxiety symptoms we got to a point where I needed to see another psychiatrist and therapist. I decided to try therapy first. My sister recently started going to one place and she really liked it, so I decided to go there as well. My new therapist was AMAZING! She would help me work through a lot of stuff and gave tools to help me get through panic attacks (because at this time that’s what we thought they were). She informed me that there was a nurse practitioner there that could prescribe medication. I went to her and again, she was super helpful. Constantly would check in with me and we would work through medication plans together so I would be comfortable with what I was taking.

Fast forward again to 2020. I went to my actual primary doctor because I was trying so many different medications and nothing was working so I started to think, maybe it’s not anxiety. And he believed me. My mom, me and him talked for over an hour and we came up with a new plan. I went to see an endocrinologist to run a workup with him and everything was normal and finally, my primary doctor referred me to a neurologist that specializes in dysautonomia.

I went to my appointment with that neurologist thinking it was my last hope for an answer. I did another tilt table test and a few other tests with him, his nurse practitioner and a nurse. After about 45 minutes, I finally had my answer. He knew exactly what was wrong. I had hyperadreneregic POTS. Now, we haven’t gotten a lot further than that, but I took a test to see how my body reacts to medications since I have had bad side effects from some and I go see an allergist this month to see about my flushing. I will post more about my specific side effects and my appointment with that neurologist at a later date as this is a pretty long blog post.

So, stay tuned!

XOXO,

Abby

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