25M with possible POTS/dysautonomia - scared, exhausted, and honestly losing hope
I’m a 25-year-old male who has been diagnosed with dysautonomia, including Postural Orthostatic Tachycardia Syndrome (POTS), but at this point I honestly don’t even know what to believe anymore.
I currently take Flecainide 100mg twice daily and Metoprolol 100mg twice daily.
Over the last 4–5 years I’ve had:
- Multiple Holter monitors (daily + weekly)
- Echocardiograms
- Stress tests
- CT scans
- Blood tests
- Thyroid testing
- Kidney testing
- 24-hour urine tests
- Ongoing cardiac investigations
I’m now seeing my fourth cardiologist, who is finally a POTS specialist.
I’ve also ended up in hospital multiple times because of chest pain, heart rate spikes, dizziness, and fainting, only to basically be told:
«“You aren’t dying right now, so go home.”»
I understand they may not have known how to help further, but hearing that over and over while living like this has destroyed me mentally.
What makes this harder is that I genuinely cannot seem to find other people online experiencing all of these symptoms together, every single day, at the severity I’m dealing with. It makes me question whether this is actually just POTS/dysautonomia or if something else is seriously wrong.
On top of the cardiovascular issues, I also have:
- A surgically reattached ligament in my right wrist that still hasn’t healed after 14 months
- Acute ligament damage in my left wrist that also requires surgery
- Nerve-related problems
- Several benign growths removed from my eyelid, neck, and back
And now my recent brain MRI has confirmed that I also have:
«“Extensive paranasal sinus disease in the sphenoid sinus.”»
I don’t fully understand how much this could be contributing to my symptoms yet, but it’s another diagnosis added to an already overwhelming list.
My symptoms happen daily, but I get severe flare-ups multiple times a week.
During flare-ups I experience:
- Huge heart rate spikes and drops
- Chest pain
- Dizziness
- Fainting
- Severe fatigue
- Brain fog
- Migraines/headaches
- Instability
- Panic attacks
- Tics/involuntary movements (eyebrow movements, throat sounds, etc.)
I can barely do basic tasks anymore:
- Cleaning
- Cooking
- Standing for long periods
- Exercise
- Even using devices for too long
The fatigue is unbelievable. Before this I exercised heavily and handled physical activity easily. Now even basic tasks can wipe me out for days if I push too hard.
The chest pain is daily and genuinely frightening. My headaches and migraines regularly stop me from driving, walking properly, working, or functioning normally.
The cognitive issues are also severe. The brain fog makes it hard to think, remember things, or do my job properly anymore.
The hardest part is the unpredictability. Every day feels random. I never know whether I’ll wake up functional or completely wrecked.
Financially, physically, and mentally this has affected both me and my family heavily.
I also barely sleep anymore. When I do sleep, I often wake up with palpitations, chest pain, or massive heart rate fluctuations.
Last week something happened that honestly broke me.
I had a nightmare where I was having breakfast in bed with my partner in the home we bought together, a home we still can’t live in because financially we can only rent it out right now.
Right before waking up, I had this overwhelming feeling like a booming voice telling me:
«“You will never experience this because you will die.”»
I woke up with crushing chest pain. My heart rate jumped from around 90 bpm to 180 bpm almost instantly.
I genuinely believed I was dying.
I couldn’t move because of sleep paralysis, and all I could think about was my mum and my girlfriend. I thought about never getting to actually live my life with the person I love. Never helping people again. Never having a future.
When I finally could move, I grabbed my phone to call my mum.
After about an hour I managed to calm my heart rate down and went to hug her. The look on her face terrified me because I could see how scared she was too.
One of the things that hurts me most is thinking about my mum having to watch me suffer or potentially die from this.
I’m exhausted. I’m scared. And so far no medical professional has really been able to help me.
I’m hoping this new cardiologist can finally point me in the right direction, even if it’s only a small improvement.
I guess I’m posting this because I feel incredibly alone in all of this.
Has anyone here experienced symptoms this severe with POTS/dysautonomia, or found out it was something else entirely?