(It's a long one, sorry. There's a TL;DR at the end.)

Trigger warning: suicidal thoughts.

I got mild covid 10 weeks ago, recovered 8 weeks ago, and 6 weeks ago the shit hit the fan and I ended up so debilitated that I was planning to take my own life. I'm starting to see some recovery now though, so I wanted to leave my story here in case it helps anyone understand what could be happening to them, because for me it was an incredibly scary and confusing experience that no one should have to go through.

I didn't have the typical symptoms most people associate with long covid - or at least I didn't to my knowledge when all this got really bad. Technically since I haven't them for more than 12 weeks yet, I have something called post acute covid syndrome. I don't know if that's significant.

Anyway.

It all started with urological issues.

I woke up one Monday morning feeling pretty weird, and by mid-morning I was taking the longest piss of my entire life. Fluid would just not stop coming out of me. It was like the Niagara Falls had opened a portal inside my urethra. I must have urinated for 5 straight minutes and by the end of it I was shaking, exhausted and shocked. And then ten minutes later it happened again. Over the course of the next hour and a half I would urinate 9 times, each one with less volume than the last. And at the same time, I developed an unquenchable thirst - I could not stop drinking water. Problem was, any water I drank would spend max 15 minutes in my body before coming right out again, virtually as clear as it went in.

I was seen same-day by a GP (a rarity in the UK) who tested me for diabetes (negative), then explained my kidneys were in overdrive, and sometimes it just happens, and to keep an eye on it if it happens again. In other words, the GP didn't know why it was happening and was opting for the "hope it goes away on its own" strategy favoured by many overworked GPs.

Over the course of the next week the problem flipped on its head, and by Friday I could hardly piss at all. Fluid was going in, it was not coming out. Another appointment with the GP, who became concerned I was going into retention (a life-threatening condition if not treated) and sent me to the hospital. I arrived at the hospital, they did an ultrasound to confirm my bladder was emptying, and popped a finger up my bum to check my prostrate. Satisfied I was not in retention, they kicked me out, theorising I must have had some phantom kidney stone despite not being in any pain.

The following week the urological symptoms eased a bit; not normal but tolerable - I was still urinating frequently and had a really weak flow, but other than that, it wasn't going too haywire.

While this was improving, however, one of the worst symptoms I've had was just getting warmed up: gastro. I think the issue is called gastroparesis (gastro - stomach, paresis - paralysis) but I don't have a medical diagnosis, so it's just my opinion. Basically my digestive system had slowed to a crawl, and food wasn't being digested or emptying from my stomach, or passing through my intestines at its normal speed. And when it did come out the other end it was partially undigested. So the day after my trip to the hospital for urology it was taking me five hours to eat a sandwich. The GP decided to put me on famotidine, an acid inhibitor, which likely only made the problem worse. Fortunately I had the sense to discontinue those meds after 5 days of seeing no improvement.

Over the course of the next three weeks I would struggle to eat more than 500cals at day, my weight went into freefall, I couldn't shit, I felt constantly bloated (which at times made it feel like it was difficult to breathe), developed a 'choking sensation' in my throat despite nothing being stuck there, and this all led to anxiety, panic attacks and exhaustion. I also started developing peripheral neuropathy, and had constant, maddening pins and needles in my arm, face and top of my head on the right side. The urological issues came back with a vengeance, and instead of an episode lasting a few hours it would be several days at a time of constant thirst and constant urination. I started having episodes where I felt brain damaged for ~3 hours at a time, couldn't think straight and couldn't get my words out.

Three weeks with no breaks from all of these symptoms puts a real strain on your mental health, I can tell you. But what really pushed me to the edge was when it started robbing me of my sleep as well. It was the one getaway I had left, and suddenly I was struggling to get more than a few hours of incredibly broken sleep a night.

By the end of this period, which was about a month in from when it all started, I was making plans to kill myself. If I couldn't sleep I knew seizures were going to become a possibility. If I couldn't eat I knew muscle wastage and starvation was a certainty. I had gone from healthy with no underlying health conditions to a dysfunctional wreck trapped in a body that had stopped working and was instead torturing me every minute of every day. I didn't want to become a vegetable. I bought rope, I learned how to tie a noose, and I made a promise to myself that I wasn't going to live what was left of my life connected to tubes in a hospital somewhere. A timer started ticking in my head. I didn't know when I was going to do it, I just knew that if things continued down this path that it was inevitable, and I wanted to prepare for it while my brain and my muscles still worked.

I didn't think any of this was long covid at this point. I'd never heard of these kinds of symptoms in the media, it was all 'brain fog' (a very cute term for what feels like a severe concussion) and fatigue. So I thought I had some sort of rapid degenerative neurological disease. All of my own research was pointing to damage to the vagus nerve - it controls all of these functions and more, including some things I hadn't experienced like heart issues.

I'd been seeing GPs constantly throughout the month and they were all mystified. Blood tests, normal. Blood pressure, normal. Urine tests, normal. Stool sample tests, normal. I was admitted to A&E over the episodes of confusion out of precautionary concern that it could be something called a TIA - a mini stroke. A&E did some cursory tests to determine that I wasn't in immediate danger of dying and then kicked me out saying they "don't do investigative work".

The biggest issue I had with doctors is that they would only look at the acute symptoms and didn't seem capable of taking a step back to try and see the bigger picture. Oh you've got urological issues? Here's a referral to a urology clinic. Oh you've got gastroenterological issues? Here's some laxatives, go see a gastroenterologist, the earliest appointment we have is in six months. Oh you can't sleep? Here's a pill for that. Oh you've got peripheral neuropathy? Is your job stressful?

I knew that all of these things going wrong at once meant there had to be an underlying cause, but the doctors didn't seem capable of looking for it. I always thought doctors were like detectives, figuring out problems no matter how complex, compelled to solve the puzzle. But they aren't. They're more like sweat shop workers with a conveyor belt of people complaining about confusing things to deal with and zero time to think about them. Some doctors were even starting to suggest to me that it was psychosomatic. I felt alone, helpless, ignored and hopeless.

I thought I had experienced depression in my life before, but this was a place much darker than I've ever been before. I hid the fact I was suicidal from everyone. Even doctors doing their due diligence by probing about my mental health got told flatly "I'm surviving". In the UK, they can section you if they think you're a danger to yourself. I didn't reach out for support, which I realise now was wrong. But I didn't want them to stop me if I decided to pull the trigger, so to speak. I needed a way out of this, and if medical professionals couldn't give me an explanation - because to me, without any understanding there can be no hope - then I couldn't see any other alternative.

The vagus nerve also regulates your mood, by the way. Because of course it does. Who put this one nerve in charge of so many vital bodily functions? I have no idea how much of my thinking was down to whatever was happening to my vagus nerve, or the misery and hopelessness of the situation, or both. It was probably both.

Then came the lifeline. I found an article, published just a few weeks ago, that connected the dots I knew had to be there, but until now hadn't found any evidence for. It genuinely saved my life, because it took suicide off the table for me: https://www.forbes.com/sites/williamhaseltine/2023/07/07/new-insights-into-long-covid-point-to-damage-to-the-vagus-nerve/

This one article gave me the understanding I needed of what was happening to me. And it also gave me that thread of hope I so desperately needed. Most covid long haulers have a recovery within two years, or so I've read. The extent of that recovery varies, and I know there can be setbacks, but to me it signalled that things most likely would get better, and not worse. It showed me a way out that didn't involve a rope.

And I'm happy to report that a few weeks on I am starting to see signs of a recovery. My calorie intake has slowly begun to creep up, though it's still weight loss territory. My sleep has improved, though it's still broken. My urology issues have stabilised, though they aren't yet normal. Almost all of the symptoms are trending towards 'better' and not 'worse'. I have bad days, and I have days where I almost feel normal. I can see a time where that balance will shift to having more normal days than bad ones. Two weeks ago that didn't seem possible to me.

I still don't have a medical diagnosis for any of this, and I suspect I never will have one. But I think I've arrived at the correct conclusion. I need to see a neurologist with expertise on the vagus nerve to be sure, but the earliest one available is some time in 2024, so I won't hold my breath.

I'm not out of the woods and I suspect I have a long road ahead of me. But I do think I'll make it to the end of that road now.

If anyone else finds this post and is experiencing any scary symptoms like mine after having covid, I hope this helps give you a lifeline too.

Fuck this virus.

And to everyone still suffering in its aftershocks, you have my sincerest empathy. I wish you all the best.

TL;DR

I got covid. Then a few weeks later I got tons of symptoms related to the vagus nerve including:

Appetite loss

Choking sensation, worsened by eating or anxiety

Hoarseness of voice / loss of voice

'Fullness' feeling in stomach, bloating, difficulty breathing

Muscles twitching in throat / neck stiffness

Loss of saliva / mucus production

'Blockage' sensation when urinating

Urinating abnormally high or low volumes

Excessive thirst

Weak urine flow

Pins and needles in arms, face and head (predominantly right side)

Nausea, usually after eating

Stomach gurgling and growling constantly

Chest / neck 'tightness'

Aching muscles

Hot flushes, especially after light activity

Diarrhea or constipation

Dizziness

Tinnitus

Blurred vision

Difficulty sleeping / broken sleep

Anxiety

Depression

Suicidal ideation

If you have these symptoms too and have recently had covid, check this link out: https://www.forbes.com/sites/williamhaseltine/2023/07/07/new-insights-into-long-covid-point-to-damage-to-the-vagus-nerve/

Some other useful info I found on the vagus nerve: https://my.clevelandclinic.org/health/body/22279-vagus-nerve

Good luck.

Quick edit 8 months later: I get a lot of questions on how I'm doing now, and it's a complicated answer (as you might expect) but the short version is - much better. I still have some issues (mainly gastro) but pretty much everything besides that has slowly returned to normal, or 90% of the way there anyway. It took about six months to recover from this dirty bomb of a virus, and I never ever want to experience this shit again. 0/10, would not recommend.

If you want to ask me any questions in real time I'm happy to answer. You can find me in the covid longhaulers discord (a support and information group for longhaulers) - https://discord.gg/a8zTBk9amu - my nickname is Rush.