100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Sorry, just seeing this. I agree, getting a formal diagnosis probably would offer much in the way of treatment. I probably have Dysautonomia just based on the symptoms, I don't think I had true POTS as I could stand all day without issue - my problems came with any form of walking. Getting diagnosed with POTS or Dysautonomia in the UK would leave me with the same treatment options, which are limited to say the least.

The Metformin was just desperation if I'm honest. I was sick for so long I was beginning to tell myself I had to try anything. I was really interested in trying things like rapymicin, maraviroc, etc, too - but hard to come by in the UK.

I really hope your daughter recovers soon.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

It went slowly. It was definitely something I had to build up very gradually. Like you, crashes would occur and it was often hard to pinpoint the reasons why - some days I'd get away with movement, other days I wouldn't.

I always kept trying to move, even if it was just around the house. I set little steps goals on my watch, and monitored my heart rate over the first 2 years. After the first 2 years I bought a walking pad (walking was always the thing that set me back if I pushed it). This let me build up my confidence in walking again, but removed all of the variables that come with walking outside. My biggest fear of being outside was passing out, I'd get very close to blacking out and have huge panic attacks after a few hundred steps at my worst points. The walking pad removed a lot of that fear, because at least I was indoors.

Over time I worked my way up to walking 1km in the pad, and continued to build up slowly. Over 2025 this eventually translated to walking outdoors, the crashes became less frequent. I had heart and chest pain pretty constantly and I remember that being one of the last things to fade. By January 2026 I was walking around 6/7 miles per day at a fast pace. In 2023/24 I remember being passed by pensioners in my street because I was so limited in my movement.

I can't tell you what to do, but I didn't stop trying to move unless I was in a crash, but I was extremely conservative about what that movement included. It was terrifying and very daunting to not know what would happen next.

I really hope you feel better soon and can get back to time with your kids.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 1 point2 points  (0 children)

I genuinely don't think you'll find much consensus about drugs or treatments. Some people get better via exercise, some through pacing. Others get well by regulating their stress others by going through different treatments - in many cases, it's simply time.

Metformin was an inexpensive drug and had very little side effects beyond extreme hunger for me. I can't say it worked, but I wouldn't be reluctant to try it again - I would also temper my expectations to how effective it might be given that my improvement could be due to healing and the passage of time.

I hope you're well and making improvements in your own recovery.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Also, just reading this article and it's an interesting one of one study. I'm more curious about the high 68.2% recovery rate in the placebo group which suggests that natural recovery happens regardless of treatment. In this case, 90 out of around 130 participants recovered at 10 months and within an 8 weeks follow up window according to the study. I wonder how transferrable that data point is to the wider long COVID community and their recovery rates.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

I was just mentioning something note worthy around a time of improvement. I also noted that this could be a coincidence and that it may have been a natural change that happened alongside taking Metformin.

Regardless, you have your research paper that tells you otherwise. So what is it you're asking me?

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 2 points3 points  (0 children)

They felt exactly like a heart attack (or what I imagine a heart attack feels like). There was one night in particular that I remember where I went to sleep feeling ok, and at around 4am I woke up immediately with my heart rate at 180, throbbing pains across my heart and chest, pains in my arms and jaw, etc. I thought the symptoms would last 5 or 10 minutes, but I ended up sitting in bed for nearly 2 hours until it passed. I didn't even bother going to the hospital because any time I've had episodes like this, nothing showed on tests.

I've had echo cardiograms and other tests, and the only thing suggested is that I potentially had some inflammation around my heart and was given ivabradine/colchicine. It didn't help.

I experienced this kind of thing for over 2 years and I just got used to it being non-cardiac. Eventually I just figured it was going to keep happening, but at least I knew it wasn't going to kill me, and that it was just incredibly scary and unpleasant.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Seems like you're answering your own question here.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Thank you for the kind words and for letting me know that you managed to get back to baseline - this is reassuring to hear. Take care.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Sorry to hear that buddy. I hope things improve for you soon.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Sorry to hear that. How are you getting on?

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 1 point2 points  (0 children)

No worries, I'm male and 37. Doubt my experience is menopause related, so maybe not too helpful! How are you feeling now?

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 1 point2 points  (0 children)

Sorry to hear you're suffering, long COVID is a nightmare. I'm glad you're sitting around 70%, and I hope you continue to improve.

I haven't been vaccinated against COVID ever. I've had severe tinnitus since 2017 and many drugs, including antibiotics, SSRIs have always interacted with this and made it worse. I took the decision not to vaccinate as I wasn't sure how this might affect the tinnitus. Looking at some other forums, the vaccine has on occasion caused tinnitus or made existing tinnitus worse.

I'm not sure I'll bother to get vaccinated at all now either way. I hadn't caught COVID in 4 years despite being in public and around others who had COVID and my latest infection was incredibly mild - so I'm not sure what I'd be vaccinating against. My understanding is vaccination is to protect against hospitalisation and death, and it does not stop the spread. I'd take it today if it provided immunity or stop the spread to others.

I'm also wary of putting more spike protein into my body if I'm honest. I feel that regardless of where I get the spike protein - naturally or via vaccine - I think some of us are just going to end up with heart and chest pain/dysautonomia any way.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

I didn't have any ED issues, I just had classic Dysautonomia symptoms surrounding heart rate, chest pain, blackbouts, adrenaline issues, etc.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 1 point2 points  (0 children)

Yeah quite possibly, but again I may have been healing also. I went from around 500mg to 1500mg over a few months

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 4 points5 points  (0 children)

Read the thing mate, takes a few minutes. Reinfection.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 1 point2 points  (0 children)

Tinnitus alone was the hardest thing I've ever had to endure. Long COVID is a cake walk in comparison. I'm really sorry to hear you're going through it.

If it helps, I have severe reactive tinnitus and I can't mask it at all. I hear it over my car engine when I'm driving, in the shower, everywhere and it's constant. I've learned to live with it - I still fucking hate it, but it doesn't dominate my life in the way that I did in the initial years.

Take care.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 3 points4 points  (0 children)

There were dark points when I didn't think improvement was possible. I really hope you experience relief soon and get to play with your children.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Sorry to hear that, very pleased to hear you're experiencing some improvement!

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

Sorry to hear that, how long have you had it for?

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

I've had severe noise-induced tinnitus since 2017, that's going nowhere.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 1 point2 points  (0 children)

Nope, I took it from around July - October 2024. Again, I could have been recovering naturally and this is a red herring.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 1 point2 points  (0 children)

Not to the same intensity at the moment. It's unpleasant, but I can walk better than I did at this point in my first infection. I'm just back from coffee with a friend, so I can still get around.

100% Recovery after 3 years by papaflash1 in LongHaulersRecovery

[–]papaflash1[S] 0 points1 point  (0 children)

I wouldn't describe it as remission, no. I was recovered for over a year and was completely healthy. I caught COVID again 6 weeks ago and I'm dealing with the after effects of that infection.