u/areuuuforreal

I wanted to post this because I spent months feeling confused about why some of my symptoms did not fully fit “just POTS.”

After a major infection in 2024, I developed POTS/dysautonomia symptoms: heart rate spikes, lightheadedness, dizziness, adrenaline surges, near syncope, feeling awful standing too long, etc.

But there was another layer to what I was experiencing that felt completely different and honestly scared me way more.
I was dealing with:

-derealization/disconnection even while lying down

-visual overstimulation

-malls/grocery stores suddenly feeling unbearable

-fluorescent lighting feeling “wrong”

-random drop

-weird sinking/falling sensations walking on ramps or sloped surfaces

-feeling mentally foggy or unreal after busy environments

And that part did NOT feel purely orthostatic to me because sometimes I could literally be resting in bed and still feel disconnected/derealized.

Eventually I came across PPPD (Persistent Postural-Perceptual Dizziness) and it explained so much.

From what I understand, PPPD is more about the brain/vestibular/nervous system getting stuck in a hyper-alert state after an infection, vestibular issue, panic spiral, dysautonomia, chronic stress on the body, etc. So your brain starts over-processing balance, motion, visual stimulation, surroundings, all the time.

For me personally, POTS explained the cardiovascular/autonomic side of things, but PPPD explained the “why does the world suddenly feel visually overwhelming, heavy and unreal?” side of things.

Posting this because if anyone else developed POTS after an infection and is also dealing with derealization/visual overstimulation even while resting, please look into PPPD/vestibular dysfunction too because realizing there was an actual explanation behind this made me feel way less alone 😭

Not even trying to glaze Northeastern for no reason but sometimes I genuinely forget how insane the co-op advantage is until I talk to friends at other schools.

Especially as an international student in the US job market right now… getting work experience is HARD. Like really hard. Most students at other colleges are fighting for random internships with barely any structure, while at Northeastern co-op is so normalized that companies literally expect to hire us.

I have friends at other universities who are struggling just to get interviews meanwhile Northeastern students are out here doing co-ops at places like BCG, Apple, Tesla, Puma, the Big 4, biotech companies, luxury brands, startups, literally everywhere 😭

And the craziest part is how “normal” it feels to us because everyone around us is doing it.

Obviously recruiting is still stressful and nothing is handed to you, but compared to most international students in the US, we are genuinely in a very privileged position career-wise. The amount of actual corporate experience people graduate with here is wild.

Sometimes I complain about Northeastern and then I remember most colleges do not have an entire system built around students getting 6 months of full-time work experience before graduating 💀

I've been part of this community for a while. Posted here before about my initial experience and then about developing dysautonomia after clearance. I hope this helps even one person feel less alone.

• Who I am and what happened:

I cleared H. pylori in December 2024. Before that I had months of vomiting, significant weight loss, anxiety, panic attack, all that horrible stuff that makes you feel like a different person. I was 20.

I compare my life before and after constantly. I think most of you do too. There's a version of yourself you remember someone who lived in their body without thinking about it, who woke up and just got on with the day, who didn't know what a heart rate monitor was and then there's whoever you became after this infection. The gap between those two versions is one of the loneliest things I've ever experienced. Because it's invisible. Because you often look completely fine. Because doctors look at your tests and say normal and you're sitting there knowing that normal is not how you feel.

I'm not going to tell you I understand exactly what you're going through because everyone's experience is different. But I'm going to tell you what happened to me. And if any of it sounds familiar you're not imagining it and you're not alone.

• What developed after clearance and how I didn't even realise at first:

After H. pylori cleared I expected to get better. Instead I got worse in ways that seemed completely unrelated to my stomach.

Dizziness every time I stood up. Heart rate spiking. Constantly lightheaded. sleeping. Brain fog. A strange not-present feeling like I was watching my life from slightly outside it rather than living it from inside.

I didn't connect any of this to H. pylori. How would I? The infection was gone. My doctors weren't connecting it either. My GI literally said you are fine now, didn't give any probiotics or say anything at all. He thought it was ridiculous and I was making a big deal.

What was actually happening is that H. pylori had triggered a cascade. And I didn't even realise until months later.

• The iron infusion and what came after:

Eventually my ferritin got low enough that I needed an IV iron infusion.What nobody told me was that my iron kept struggling not just because of gut damage from H. pylori but possibly because I had developed celiac disease silently, my intestinal lining continuing to be damaged every time I ate gluten, unable to absorb iron properly regardless of how much I took or how it was delivered.

• The fear that came next and how my body became something I was afraid of:

I want to be honest about this part because I don't see people talk about it enough and it was one of the hardest things I went through.

After my iron infusion I started getting lightheaded. It kept happening. My body was producing sensations that genuinely scared me. And when something scares you enough times, something changes in how you relate to your own body.

I don't know exactly when it happened. It was gradual. But at some point I realised I was checking my heart rate constantly. Like, constantly. Before I stood up. After I ate. When I was sitting doing nothing. I was running this continuous background check am I okay, does this feel normal, is something about to happen that I couldn't turn off.

And here's the thing the lightheadedness was real. I want to be clear about that because I spent a long time doubting myself and I don't want anyone else to do the same. This wasn't me being anxious for no reason. H. pylori had left my body genuinely depleted and my nervous system genuinely disrupted. I had lost significant weight during the illness weight my body couldn't afford to lose and that weight loss had taken blood volume with it. My autonomic nervous system, which regulates how your heart rate and blood pressure respond when you move and change positions, had been directly affected by months of being sick. H. pylori doesn't just damage your stomach. It damages the network of neurons in your gut wall that talks to your autonomic nervous system constantly. My body had become so weakened and so dysregulated by everything H. pylori put it through that it simply couldn't manage blood flow the way it used to. That's POTS. That's what was causing the lightheadedness that started everything.

And then I was monitoring the sensations generated by the fear of the original sensations. A loop with no obvious exit. The more I focused on how I felt the more I felt. And the more I felt, the more I monitored.

• Derealization

But then things got worse before I had any understanding of what was happening to me.

The derealization started. And if you've never experienced it I don't know how to fully explain it except to say that it feels like the world stopped being real. It was one of the most frightening things I have ever felt because there's nothing to point to. You can't explain it to someone who hasn't felt it. You just feel wrong in a way that has no name and no obvious cause.

And then the visual overstimulation started. Malls became almost impossible too much movement, too much visual information, lights and people and motion all hitting at once and my brain unable to filter any of it. Busy environments felt genuinely threatening in a way I couldn't explain. I started avoiding things without fully understanding why. The world had become visually loud in a way it never had been before.

All of this every single bit of it started after H. pylori. I want to say that clearly because it took me a long time to connect it and I don't want it to take you as long.

I eventually came across the term PPPD literally this year persistent postural perceptual dizziness. And for the first time something made sense. PPPD is what happens when your vestibular system the system that processes balance and spatial orientation gets destabilised by a period of genuine physical threat. Mine was destabilised by POTS, by iron deficiency, by the disruption from H. pylori itself. And then my brain, trying to protect me, went into permanent high alert. Processing every sensation. Monitoring every movement. Amplifying everything visual and physical and spatial because it had learned that my body was a place where frightening things happened.

The attention became the amplifier. The more I focused on how I felt the more I felt. The more I avoided the more my world shrank. The fear of the sensations generated more sensations to be afraid of.

My brain doing exactly what brains are designed to do after prolonged threat had learned something incorrect. And unlearning it while also managing the real physical conditions underneath has been the hardest thing I've ever done.

What I want to say to anyone who recognises this is it didn't feel like anxiety. It felt completely physical. Because it was rooted in something completely physical. That's what makes it so confusing and so isolating. You go to doctors and they say you're anxious and you want to say no you don't understand my body is actually doing something and you're also right that you're scared and both things are true simultaneously and it's exhausting to hold both of those things at once when nobody around you seems to understand either of them.

I am still working through this.

But having a name for it and understanding how it developed starting from real lightheadedness after a real illness has helped more than I can explain.

• Silent celiac the thing I want you to know:

I feel nothing after eating bread. no obvious reaction.

And yet my Endomysial IgG antibody is positive. My Anti-TTG IgA has nearly quadrupled in eleven months.

Celiac disease is silent in a significant proportion of people. The damage happens deep in the small intestinal lining where you have no pain receptors. Your immune system quietly destroys the villi the tiny projections that absorb nutrients every time gluten is present. No immediate symptoms.

Which means iron that doesn’t respond to treatment because the machinery absorbing it is being progressively destroyed. Which means ongoing gut sensitivity and immune activation feeding the whole cascade.

I am not yet on the other side of the celiac diagnosis. I’m in the process of confirming it. But understanding that it might exist that there might be a dietary change that could heal my gut, normalise my iron absorption and quiet the immune activation that has been running since H. pylori feels good.

If your iron won’t respond to treatment. If your thyroid is hard to control. If your gut sensitivity persisted after clearance. If you feel nothing obvious after eating gluten but something still feels wrong. Please ask for the full celiac panel. Please keep eating gluten until you’re tested or the results won’t be reliable.

• What I want to say to you directly:

I’m not recovered fully from the after effects. I want to be honest about that. I’m 22 and I’m still in the middle of this and some days it’s really hard and some days I compare who I am now to who I was before this infection and the gap feels enormous.

But I understand what happened now. And understanding it having names for things, having a map of how one thing caused another caused another has made it less frightening.

You are not imagining your symptoms. You are not weak. You are not someone who just can’t handle things.

You had a serious infection that attacked multiple systems simultaneously and left consequences that the medical system is often not equipped to connect or explain. You deserve better answers than you’ve probably been getting. You deserve a doctor who looks at the whole picture not just the test that comes back abnormal.

Keep pushing. Keep asking. Keep connecting the dots.

You are not alone in this. I mean that from inside it, not from the other side of it. We are in it together.

Happy to answer questions in the comments. Not a medical professional. just someone still working through it who has done a lot of research along the way.

Sending everyone here so much strength 🤍​​​​​​​​​​​​​​​​