Tough Times
I'm currently undiagnosed. Have been misdiagnosed. Have spent money and lots of time to find out what's wrong. I've been told it's panic disorder and, to be frank, it did fit a couple criteria.
I'm one to know much about many things, and what I don't know I research until I do. And something about panic disorder didn't fit. My panic symptoms started in my body first, always, and only then transferred to my brain. So I figured, it's gotta be something else. I'm on escitalopram, for the record, it did do a great job managing my mind's spirals. But it didn't solve the problem. So I started researching and, basically, trial and error my way through. I was switched to venlafaxine and got real bad real fast and I figured it was something to do with norepinephrine.
My symptoms, as a baseline, are fast, really fast heartbeat in different circumstances, and not much else. Some palpitations every now and then. If I try walking for 15 minutes, I reach up to 160-170bpm. That's far from normal. I went to all the doc's. They all said everything is fine, anatomically. Heart is good, thyroid is good, bloodwork is good, oxygenation is good. Anxiety is the side effect, not the cause. Panic attacks, the same.
Eventually I understood it's something about adrenaline. I've been taking propranolol 20mg in the morning, when it's the most active time in the day for my symptoms. At one point, I saw my pulse going 160 while I was putting on deodorant, every morning.
Everything started looking like I had hyperPOTS. It's hard and really expensive to correctly diagnose where I live. I did a stress test and it showed up there in a certain manner, but doc said we should make more tests. So I did. On my own.
I'm now taking multiple supplements, because my plan now is, if my heart wanna run a marathon while I'm buying groceries, at least it should have fuel to do so. But what helped me the most, hold on to your chairs, was drinking water. I would have NEVER thought about it. I had to run prompts through multiple "helpful assistants" and sessions to reach this answer. And I started drinkimg over 3 liters a day. I can now walk. I have regained some of my confidence. From not being able to get out of the house alone, or even sleep alone, I've managed two and a half hours of cycling (supervised) and sleeping alone my fourth night tonight. I'm still in a very bad shape, and still under a shade of doubt if it's really POTS, but whatever works is not stupid.
If y'all suspect yourselves of POTS, or have it, drink water! It might help! And if not, still, DRINK WATER!
@SteveDyp That sounds like such a long and exhausting road, and I can hear how much effort you’ve put into trying to understand your body. Being told one thing over and over when it doesn’t fully fit your lived experience can feel incredibly isolating and frustrating.
It also makes sense that finding something as simple as water helping would feel both surprising and validating. After struggling so much, even a small thing that gives you some relief can mean a lot. I’m really glad you’ve had at least some improvement and that you’ve been able to regain a bit of confidence and independence.
It sounds like you know your body really well, and you’ve been paying close attention to patterns and what helps. At the same time, living with that much uncertainty can be really draining.
What has this whole experience been like for you emotionally — especially the part of not feeling fully understood?
The part with not being understood wasn't such a big deal. I never felt that I was completely understood many times in my life. I'm a rather complex, and quite odd one at times, and I've accepted that many people can only meet you at their own level of understanding. The big emotional hit for me was a bit more abstract than that.
I relied on my body for so very long. It has never failed me where you'd typically expect a body to fail. I've done many things to betray this body, again and again, but *** it was a shock when it did it back.
Long story short, I was down a very deep hole mentally, but struggling to recover. And then, very scary symptoms emerged and forced me to make haste with my recovery (substance abuse to be exact) in order to counter the feeling that I might die the next minute. It was a very efficient boost in that direction, this kind of fear. I got clean in no time. I started looking after myself, eating healthy, munching on adaptogens, keeping active.
But it didn't stop, it just got worse and worse. And there was the absolute shock. I was finally doing the right thing, and it felt like I was being punished for it. Little did I know initially, I had all this coming for me since before even thinking of getting clean. Past mistakes caught up. I mistook them for my body failing me, when in fact, I have failed it over and over.
Quite the journey, not gonna lie. Now I'm trying to respect it more. Understand the fundamentals, the functionality, the chemistry and anatomy as well as I can, in order to make things right with my only bridge with this realm.