u/Hot_Owl1803

Hello everyone! Hope you're all doing ok, just wanted to add an update to some of my earlier posts:

https://www.reddit.com/r/LongHaulersRecovery/s/ALzlH6t7fG

https://www.reddit.com/r/LongHaulersRecovery/s/FlWhskh0Gt

TLDR; 28m, caught covid in April 2025 (3rd or 4th time), took me out with wild dysautonomia symptoms, mainly blood pressure and neurocardiac stuff, followed by all the usual nervous system dysregulation issues. Didn't experience me/cfs or pem, but basically everything else. I believe I am now essentially fully recovered physically, but to caveat, have some lingering dysfunction and emotional difficulties.

I haven't posted in a while because I didn't want to clog the sub up with incomplete recovery, but just to update from my previous posts, here's a brief timeline of my presentation:

April '25 - Acute covid infection, was quite a nasty fever but recovered in a couple of days. Lost smell and taste for a few days, had kidney pain, cough lingered for a few weeks. Also had some normal post viral fatigue for at least 6 weeks after (felt like every day was the day after an all nighter, but generally tolerable enough to go to work, etc).

May-July - Onset of bradycardic heart palpitations (chronotropic intolerance, skipped beats, weak stroke volume, orthostatic intolerance, etc). Also started having massive adrenaline dumps out of nowhere plus all the other usual symptoms like boat-bounce vertigo, tinnitus and ice pick headaches. First major crash with my girlfriend whilst on holiday, I feel terrible for traumatising her, but it slowly improved after about a week. Blood pressure was weirdly high, staying rigidly above 130/90.

July - Massive disabling crash, couldn't breathe, blood pressure dropped through the floor (lowest was only 90/60, but for me that's flipping low), boss called an ambulance to my workplace, blood tests pretty much all normal. Couldn't physically stand up without heart giving up for about a week. Unrelenting internal tremoring, ice cold extremities, in utter despair and mortal fear. Spent all of August retraining my orthostatic tolerance and made it back to work after about 5-6 weeks of slowly regaining my ability to stay upright.

August - September - Mercifully quiet, even managed to go on a light kayaking trip with my bros. Still had plenty of issues ongoing, but nothing too disabling, was able to commute to and from work (at least 3-4 hours on my feet total throughout the day, I worked as a maintenance electrician in central London).

October - Out of nowhere again, started having blood pressure spikes instead. For about 3 weeks, it kept randomly shooting up to like 200/100. Nothing was effective at lowering it, my parents ended up calling a paramedic one night out of concern, he accused me of anxiety despite my HR being like 55 lol. Had to take another 3-4 weeks off work throughout.

November - December - Spikes had quietened down, GP gave me an ABP that averaged 120/80 ish, but had some weird recordings like 150/68, 110/99, etc. Work stress started making me generally unhappy, also realised that I was noticing some apparent hypocapnia that was worsening a bit, but still tolerable.

January - Made the mistake of bargaining with myself, "if I can just get through Christmas, I'll be alright". Had to work through all the holiday season with the exception of Christmas and Boxing Day. January 2nd-3rd, what started as a slight cold turned into a massive (what I later realised to be) anaphylaxis-type crash, thought I was going to die (yet again, lmao). Managed to take an antihistamine that helped significantly for about 4 hours, enough for me to get home. Took one each day for the next few days, but by day 3 it caused a rebound, so I stopped and just tried to ride it out for the next few weeks, successfully. It gradually receded, and I spent time trying to dose probiotics, minimise high histamine foods. Quercetin made it worse for some reason, I believe because I have genetically high ferritin. Started taking high doses of Krill Oil, which I believe have been incredibly successful. Was too traumatised to get back on the train after a month recovering, so I just called my boss and told him I had to quit.

February - Present

The GOOD news is that, physically, everything has stabilised. My blood pressure is consistently normal (110/70-120/80), my heart has stopped palpitating, I am not reacting to anything like fragrances or high histamine foods any more (can drink alcohol and caffeine routinely without any side effects). I am tentative, but clearly quitting my job was absolutely necessary for me. Perhaps too much exposure to pathogens/pollutants and too much stress. I have even managed things like going to the golf range with my mates, spent all night out with my girlfriend drinking and dancing for her birthday (with many sit-down breaks), have been to the pub a few times, so the proof is all there that I am physically capable. I even had a short lung infection and cough for a week in April, I thought I would be done for, but thank the Lord, no anaphylactoid symptoms. Nonetheless, I have deconditioned a bit, and I definitely have some lingering vestibular and breathing dysfunction issues to sort out (the vertigo is still there, keeps catching me when I'm walking around or driving). My indomitable but terrible sense of humour also remains intact.

The less good news - I'm struggling a bit to overcome the trauma of the past year. Whereas 6 months ago I was more successful at compounding gradual exposure, the January flare just completely took the legs out from under me. Now it doesn't matter how many times I leave the house, it doesn't "stick" as proof of safety, struggling to switch off the interoceptive hypervigilance. My birthday was in February and although I was feeling quite depressed and hopeless, my God, am I lucky to have supportive loved ones, because I would have been utterly f***** without their support, as imperfect as they can be. My financial situation is also a bit dire since quitting work, have nearly burned through my savings and I don't think I qualify for disability benefits here in the UK. Very fortunate that my parents let me stay with them since this all started, but naturally this brings up its own nervous system dysregulation issues lol. Have yet to sort out universal credit due to **clerical issues**. Basically a medical imperative that I work out how to make money from my laptop at this point.

Have been re-exploring mind-body stuff, as well as doing EMDR sessions with a trauma therapist, and even found a budget friendly SSP offering, but they have not yielded any fruit yet. I suspect that this will just go away with enough time of nothing bad happening, but I will stick with these approaches for a while longer.

(Side note; feel free to input advice regarding recovering from this kind of medical trauma, I would be very appreciative of any tips ❤️)

For reference, ekg, echo and blood tests all pretty normal, apart from one isolated instance of borderline low phosphate last June and slightly elevated LDL, which baffled my cardiologist. All my other lipids and ratios are good, so not worried.

WOT I HAVE TRIED

I won't go into too much detail here, because the long and short of it is that the most effective things I've found are patience, rest and positive distractions. This isn't an exhaustive list.

Notably effective to some degree

Thiamine - I didn't have symptoms of acute deficiency, but it definitely restored some autonomic and mitchondrial function. First dose made me unbelievably sleepy. I'm fairly certain it helped me restore my orthostatic tolerance very slowly. Took it for 4 weeks in July, nothing through August to March, started taking it again a bit in March, roughly 150mg a day. Currently taking about 50mg every 2-3 days.

Antarctic Krill Oil - Convinced that taking this in therapeutic doses for 3-4 months has stabilised my mast cells significantly, gonna maintain it at a regular dose for at least 9-12 months.

Notably reactive but mixed results

Acupuncture - Made me sleepy for a day, rebounded with worsening emotions and internal tremors + swallow reflex paralysis, etc. Possibly too soon and too much.

Homeopathy - surprisingly had effects that were both positive and negative. Not gonna recommend, but personally I found certain remedies to have a notable effect. If it's placebo, I suppose it's in the same camp as mind-body.

Magnesium - made my heart symptoms way worse, but nowadays I can take moderate doses without issue. I try to regularly drink raw cocoa instead.

RRP - Oddball, but it seeeems to help me feel less anxious just a little bit whilst listening to it. Have found it useful for acute

Probiotics (HistaminX et al) - I definitely noticed some GI differences when taking them, but I couldn't confirm nor deny that they had helped. I have a pet theory that gut dysbiosis is in large part due to pH disruption, as most beneficial flora prefer slightly acidic conditions. DAO enzyme weirdly didn't have a huge effect, but I think was still worth taking.

Unremarkable (for me)

Vitamin D, C, Zinc, NAC (including Augmented NAC), various supplements like ginseng, hawthorne, lion's mane, etc etc. - Didn't find anything that noticeably helped. Naturally, still taking C, D and Zinc in moderate doses, but I even suspect that some high doses I took right before my January flare could even have been partly responsible for immune overactivation.

Graded exercise with an NHS-sponsored physio - has had absolutely no effect on symptoms, but I kinda knew that would be the case going into it, I just wanted to try to force myself to leave the house in a "safe" way. He's a chill guy about my age, so I get to hangout at the gym once a week doing arm circles and shooting the breeze, it's aiight.

Chiropractor - Did nothing for me, but she was very nice.

Massage - Did nothing for me, but she was very nice.

Hypnotherapy/QHHT/Reiki - Did nothing for me, but she was very nice.

EMDR - Isn't really working as yet, but will stick with it a while longer. She is also very nice.

Anyway, I've made this sound too depressing, the upside is that I have every reason to remain optimistic. I miss being a physically capable and robust young man who can work construction and enjoy sports and whatnot, but I do believe the nightmare will be over soon, rather than hope as I did previously. I have an appointment booked with a respiratory physio and a neuro physio to see if they can help me resolve the last of the lingering issues (it basically looks like OCHOS rather than POTS). Nonetheless, I am absolutely convinced that I am *this* close to full remission. Worth noting, I feel like a lot of my symptoms are similar to chronic alkalosis, including effects on the gut and endothelium. Turns out mast cells appear to be more stable in high CO2 environments; https://pubmed.ncbi.nlm.nih.gov/21284650/ food for fort innit.

I had tonnes of other problems as well, but this post has gone on long enough already, and it's all stuff you're all familiar with anyway. If you're curious, it's likely listed in more detail in one of my previous posts. Basically, I **think** my body is better and my mind just needs to catch up, I think. I am also going to try Yoga Nidra and some gentle posture realignment techniques, my physical prowess and vitality has massively degraded this year, to say the least.

I just recall how lonely and desperate I felt getting tortured by my own body, so I want to make this post to reassure people who are only 3-6 months into it that it does get better and you will recover, just takes f****** ages. Feel free to question me at your discretion, will update again when I am back to doing backflips and solo flying across the atlantic.

✌️WAGMI

UPDATE: Just got back from the breathing physio, in my case it appears that I am breathing to slowly and deeply, so she's given me some exercises to raise my rate to 9-12 breaths per minute. She seemed quite anti-buteyko but didn't elaborate, so anecdotally take that as you will. I'm a little skeptical, but I'm desperate enough that I'll give it a shot for the next two weeks and see if it moves the needle.

EDIT: Spelling and addendum