Good Afternoon,
Let me tell you a little about myself. I'm an office manager, softball coach, volunteer EMT/FF, college student to finish my RN, and a full time single mother. A lot, right? I know.... Don't be thrown off though, I've always been a busy bee.
Anyways, I fell ill in May 2015, it started with random bouts of heart palpitations (footnote: I was a smoker at this time). I was still functioning normally though, I just had the scares when my heart would do that funky beat, I'd get a little symptomatic and I'd lay down and force myself to go to sleep if it was severe enough. (After 6 trips to the ER in the first 2 months of this issue, and being sent away with a diagnosis of tachycardia and referral to follow up with PCP, I decided if I was going to die then I'd do it at home rather than go back). Anyways, I wore a 24 hr halter followed by a 30 day halter. I also did a stress test. My cardiologist didn't feel like there was anything significant going on and that the random palpitations followed by tachycardia were just that.... random. I still maintained my normal routines, I functioned fine, and I handled my symptoms as they came. It was never completely debilitating or life-altering. I cut out most stimulants(caffeine) and I no longer socially drank. (I was still smoking but I cut down on that drastically).
Fast forward to last fall. September 5, 2016, I quit smoking. (insert standing ovation).
I noticed within that first two weeks that life slowed down, a lot. I started to get into a slight fog mentally, I couldn't concentrate very long, I was fatigued and I just felt gross in general. I chalked it up to low BP(I normally run 90/60), and my body just trying to balance itself out from finally quitting the russian roulette with cancer.
However, as the time went on, symptoms became worse. Fast forward to November.... guess who started experiencing what felt like panic attacks? Very SHORT but random and with no warning, they'd occur. I could be at the store, I could be at work, I could be driving my daughter to basketball practice, I could be laying on the couch... it did not matter. I'd get the "oh ****" feeling and the head rush followed by tachycardia and EXTREME fatigue shortly there after. I called my PCP. She was initially curious if it was in fact anxiety. (Again, if you look back to my introduction, I've always been a busy girl.) I assured her that it wasn't but I amused her anyways and started on a very low dose anti-depressant. I finished my semester with school, and thank God that I did because my symptoms continued to get worse. I started relying on rides if I had to leave town for anything just because I was scared of something happening while driving. I stopped the anti-depressant because it was making my fatigue A LOT worse.
Fast forward to January - I'm nearly depleted entirely. Spring semester is starting up soon, I have to snap out of this soon, right? Wrong. I ended up taking a leave from campus the second week of the Spring semester and I stuck to only online classes. That's all I could handle. I could no longer drive myself the half hour to school, nor could I handle sitting in the classrooms because the random bouts of near-syncope were becoming a constant feeling with a relentless fatigue that just wouldn't quit. I ALWAYS felt like I was in a haze and I can only describe by saying it feel like taking a handful of sleeping pills and forcing yourself to function for that day.
My PCP sent me to a neurologist, she was baffled and couldn't figure it out so it was on to the next. My neurologist ran an MRI - clean. Ct scans - clean. The only thing that would pop occasionally is my D-dimer levels. One day it was 1330. But, the ct they ran immediately following came back negative again.
It wasn't until the end of February that she finally suspected Pots Syndrome. We did the orthostatic readings... the whole lay down, sit up, stand up BP readings. My BP was low and stayed low. I always float between 90-110 systolic. No more, no less (usually). However, my heart rate would go from the low 60's laying down and shoot up to about 120-130's after standing for a couple of minutes. She ordered a tilt table test and that's where the fun began. I went to Hamot in Erie for this test... the RN didn't notice anything "too indicative" but sure enough, my heart rate increased and stayed elevated for as long as I was.
My neurologist felt comfortable enough with that to start me on .1 mg of Florinef every morning.
I will say that after a few days, I noticed that I was feeling a LITTLE different. I was more tolerant of daily activities, I was able to get through my work day without panicking too much about being left alone in the office for any extended period of time. I didn't have to be babysat at home anymore. Things were starting to look up. However, I've plateaued. And, I have to say, not much has changed besides the fact that I don't always feel like I'm going to pass out. I feel drunk 24/7, I'm still intolerant of being on my feet for more than a few minutes at a time and I still do not feel okay. I've been researching Florinef and even though it's most common for Pots, I'm not sure if it's the right fit for me because my BP doesn't bottom out. Well, at least it didn't.
I've gone from a completely normal life full of activity and functioning normally.... to having to be driven anywhere I go, always feeling drunk and nothing ever feels real.
Help.... Does anyone else relate? What did you do to feel better?
I'm desperate.
-Holly