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Anonymous42119
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Default Oct 09, 2019 at 09:27 PM
 
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Originally Posted by HowDoYouFeelMeow? View Post
POTS stands for postural orthostatic tachycardia syndrome. It’s a type of dysautonomia, which basically means dysfunction of your autonomic nervous system (ANS). Your ANS controls things like heart rate, blood pressure, digestion, fight/flight/freeze response, etc. When I stand up, my heart rate and diastolic BP go super high. Then they crash and I pass out due to lack of blood/oxygen in my brain. If I’m standing, I have to be moving or I get sick and pass out. I’m always pacing and wiggling. Or sitting or laying down. I can only sit for about an hour. There are two types of POTS. I have the hyperadrenergic kind. When I stand up, my norepinephrine/noradrenaline blood levels go really high. My body is in a constant physiological state of fight or flight. It makes me shaky and extra jumpy. It looks like anxiety to an observer, but it’s not anxiety at all. It’s dysautonomia. On average it takes 7 years to get a diagnosis, usually because doctors are close-minded and say it’s all in your head. But it’s not. It’s in your autonomic nervous system. It took me 13 years to get a diagnosis.
The VA diagnosed me with CFS. I haven't had a dx of POTS yet. I tried the graded exercise thing, and it nearly crippled me. It made my condition worse.

I don't know if I have POTS. All I know is that I cannot stand for too long, that if I even do dishes I am exhausted. There are some days where I have energy to shower, go out, run an errand, or attend a meeting (like tomorrow), but then I'm out for the next two days. I try to only schedule two to three outings a week, and never back-to-back, because I need the break in between to rest.

I have heart palpitations at night when I try to lay down, but it's not from anxiety. It's every night nearly. I also hear my heartbeat in my ear. Sometimes I have to sit up and move around a little until I am sleepy enough to sleep. Sometimes I have heart palpitations in the day, or whenever I am about to go to sleep. One time I had to be rushed to the ER in an ambulance, and they gave me nitroglycerine, but it was just some strange heart palpitation, and the doctors there didn't believe me at the civilian ER when I said that I was diagnosed with CFS. They believed my PTSD though, but they suggested I see a cardiologist who can give me a stress test. This was just a few months ago, so I have yet to find the energy after the big move out of state to see a cardio. I will meet with my new primary care next week at the VA, since I barely had my papers transferred. I'm hoping they will see all the notes, but I'll hand them the copies I got from the ER.

Who knows what I have. I just don't want to die. I don't want to have a heart attack. I need to quit smoking, so that is first on my list when I get to meet my doctor and hopefully ask if they can prescribe the patches to me again. That would be a start. And maybe groups for smoking cessation, to help me stay motivated to quit.

But the heart palpitations thing I've had since my mid-20s, after I was discharged from the military. I always thought of them as panic attacks, but the VA stated that no, those aren't panic attacks, even though I do have PTSD. Okay, welp, then I will have to just deal with them every day, and I do. I calmly listen as the heart palpitations beat erratically. I calmly hope and pray that I'm okay every day. I do what I can every day to get through. Some days are better than others. My moods don't change much, but I'm not depressed; I try to stay occupied and really try to make a concerted effort to stay positive.

I'm doing all that I can.

If this is a neurological thing, they have yet to do a brain scan.
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