u/Cute-Huckleberry9392

I’ve been on a long, exhausting journey trying to get diagnosed with Hyperadrenergic POTS (HyperPOTS). My symptoms match, but my test results have been a confusing mix of borderline and "negative."

I had a Tilt Table Test (TTT) that was negative for standard POTS, though I suspect the Xanax I was taking at the time may have suppressed my nervous system. During the tilt, my heart rate spiked by 57 bpm, and my blood pressure surged to 181/99. While these numbers didn’t stay that high for the entire duration, they were significantly elevated until the test ended.

I’ve also had two TM Flow tests. The first, taken a year ago while I had the flu, showed sympathetic failure. The second, which I just completed, showed borderline autonomic neuropathy. It feels like I’m constantly hovering on the edge of a diagnosis without getting a clear answer.

Since 1998, I’ve suffered from "adrenaline dumps" at night. I wake up gasping for air (not sleep apnea) and literally jump out of bed struggling to breathe. My heart pounds, my body shakes, and it feels like "poison" has been dumped into my bloodstream. It’s a feeling of total, impending doom.

For decades, doctors dismissed this as sleep apnea, but it feels like my body is sounding a life-or-death alarm to get me breathing again. It has left me terrified to go to sleep, feeling like I’m eventually going to die from an episode that no one understands.

I’ve recently realized I cannot regulate my body temperature. If I drink anything cold, I become ice-cold as if I’m standing in the snow, shivering under heating pads while my husband feels perfectly fine.

I have already been diagnosed with Sjögren’s syndrome and Small Fiber Polyneuropathy. Additionally, I’ve dealt with debilitating spinal pain for five years, which has led to me being on disability.

Has anyone else had "negative" or "borderline" tests despite having such clear autonomic symptoms? Does this sound like the Dysautonomia/HyperPOTS experience you’ve lived through? I’ve felt alone in this for so long—I would love to hear your stories or any advice you have on how to talk to specialists.

I was given propranolol for my dysautonomia symptoms a month ago but I’m afraid to take it, even at the lowest dose. It’s because I have bradycardia on top of everything else. I told my neurologist this but he told me that that’s why he gave me the lowest dose and to just give it a try. My mom tried this years ago and she said she felt worse because she was already lightheaded all the time and she has bradycardia also and she told me that she felt so much worse taking beta blockers. I’m always lightheaded too and when I’m laying down in bed calm, my hr gets really low so I’m worried even with a low dose that my heart will just stop in my sleep. Plus I have high blood pressure a lot but not everyday, some days it’s normal or on the low side so what if it gets so low one day that I pass out. I’m just having so much anxiety about trying this even tho my neurologist said this could help with my adrenaline dumps in my sleep. Idk what to do

I’ve had burning pain down both my legs for five straight years. It started exactly one day after my third bladder surgery for Interstitial Cystitis in July 2021. Since then, I’ve had pain in my thoracic, my lumbar spine and my legs that just won’t go away no matter what I do.

I had a spine surgery in January 2023 (artificial disc replacement L4-5) that didn’t help. I’ve done physical therapy with six different therapists, and I've had at least five injections. Nothing has worked.
In five years, I’ve seen two neurologists, three rheumatologists, and two pain doctors.

I get mixed messages constantly. I’ve been told it’s everything from fibromyalgia and radiculopathy to "segmental dysfunction"—and some have even tried to tell me it’s all in my head. I’ve even seen five mental health therapists and a neuropsych, but that didn't help either because the pain is real. Acupuncture didn’t last because of insurance, and right now I’m on hydrocodone, which only takes the edge off. My quality of life really sucks.

Even though doctors seem confused, my tests show something is wrong:

• EMG: It keeps coming back abnormal. One showed small fiber neuropathy and another showed sensory polyneuropathy.

• Muscle Biopsy: This showed "reinnervation with muscle fiber grouping" in both thighs. My understanding is that some nerves died and others tried to grow back to fix it.

• TM Flow: I’ve had this twice and it shows inflammation in both feet and blood flow issues, like my heart is working too hard to pump blood to my organs.

• Skin Biopsy: I’m going to California in June to finally get a skin biopsy from a specialist to try to get to the bottom of this.

It’s not just my back and legs. I feel sick all the time and I’m dealing with:

• Heart & Air: I gasp for air in my sleep (not sleep apnea), I get adrenaline surges, and my heart pounds and races plus palpitation/irregular beat. High blood pressure also. I get freezing cold every time a drink a cold drink and I can’t seem to regulate my temperature ever
.
• Fainting: I get so lightheaded and nauseated that I can’t even donate blood anymore because I’ve almost fainted three times—the last time I ended up in the hospital by ambulance.

• The Dryness & Throat: I have severe dryness everywhere, and I have dysphagia (trouble swallowing) that affects me every single night. I’m severely dry in my eyes, nose, mouth and down below. Plus my skin and hair.

• Daily Life: I have brain fog and headaches. I don’t sleep well at all because the severe leg pain and the gasping for air keep me up all night.

I’m tired of the mixed messages from different Drs and specialists and I dread explaining this to anyone new because it’s so much to say.

I get my results back but these Drs don’t even understand them and they just can’t seem to explain it to me, especially the muscle biopsy. Why order it for me if you can’t understand or explain what’s happening😡

I just want someone to explain how all these tests and these symptoms connect to the pain that is keeping me from functioning like a normal person.

Thank you all who read this til the end, I know it’s long💕