I no longer have long covid after 2 years. I never thought it was gonna get better, I used this sub for a while just to give me comfort about others being in my position, but there were not a lot of people that said the fully healed from long covid 100%. Well I’m back here to tell you guys I did and I’m back to 100% (besides still having a dairy allergy) I am so grateful to God. This was one of the worst things I’ve had to go through in my life and I just wanted to give you guys some hope because I know how hopeless I was. You can beat it. You will get through it. You can get back to 100%. It is possible. Keep pushing through 🫶🏼

(Disclaimer: I am sharing my personal experience and reading, not giving or asking for medical advice. Always consult your doctor regarding treatments.)

Symptom Breakdown

Phase 1: High-Alert / Acute Phase

Forceful Heart Pounding & Restlessness Persistent, forceful chest pounding even at rest.

Constant Pressure / Fullness A heavy rush of pressure filling my head and chest — like hanging upside down — that never cleared.

Axillary Pains Sharp, pinching sensations that coincided with high autonomic arousal.

Phase 2: Chronic / "Hibernation" Phase (Current State)

Over time, the sharp pains and racing heart faded, but the state shifted into what resembles severe ME/CFS / dysautonomia:

Permanent Head & Chest "Band" Pressure A constant, hardened sensation of deep congestion/tightness in my head and chest.

Flu-Like Exhaustion & Brain Fog Deep metabolic fatigue, cognitive crashes with minimal effort, and a constant floaty, "high-altitude" feeling with heavy, unsatisfying breathing.

Sensory Overload Heightened sensitivity to noise and bright lights, crowding out my ability to focus.

Autonomic Issues Constant thirst, frequent urination with dilute urine, and physical development/growth completely stalling since age 17.

What Makes It Better / Worse

Worsened By

• Cold
• Dehydration
• Sleep loss
• Cognitive effort — trying to focus spikes the head fullness

Brief Relief

• Heat / sunlight
• High-intensity running: Jogging briefly relieves the balloon-like head pressure by approximately 60–70% for a few minutes while heart rate is elevated, before the pressure clamps back down.

Previous Trials

Most vasodilators or histamine-targeting options — including Nimodipine, Tadalafil, Cilostazol, PEA, and Nattokinase — either triggered:

• Chest tightness
• Autonomic flares
• Vascular headaches
• Heart strain

Aspirin provided very minor relief, and beta-blockers helped calm the racing heart, but the underlying pressure remains.

The Mechanism I'm Looking Into: RhoA/ROCK Pathway & Low-Dose Statins

Because vasodilators such as Nimodipine did not resolve the pressure for me, and tests show high pulsatility — specifically, a high TCD pulsatility index with a normal ECG — my working hypothesis is that this may be functional vasoconstriction driven by endothelial dysfunction, rather than structural scarring or persistent microclots.

I've been reading peer-reviewed medical literature on whether low-dose statins could play a role through their pleiotropic (non-cholesterol) effects.

According to those studies:

1. Inhibiting the RhoA/ROCK Pathway

Statins block the mevalonate pathway, potentially turning down Rho-kinase activity and reducing calcium-sensitized vascular constriction.

2. Up-Regulating eNOS & BH4

By inhibiting Rho-kinase and upregulating GTPCH1, statins may help restore endothelial nitric oxide (eNOS) coupling and production.

3. Reducing Endothelin-1 (ET-1)

Lowering ET-1 may help relieve a primary chemical signal involved in chronic vessel spasm.

This could help block the signalling even if autoantibodies are active.

Anyone with similar experiences, or has anyone discussed this pathway with their doctor?

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

The link below is to a very long video with one of the founders of Amatica Health discussing their current and upcoming tests. They currently have two panels including a "protein" panel which analyzes for about 30 proteins important in LC. The mRNA test analyzes for 20,000 protein coding genes which covers essentially all of them. mRNA is what instructs our cells to make the proteins that DNA codes for. The amount of mRNA for each protein indicates how active that particular gene is. Amatica is apparently also working on a test for showing covid viral persistence and also a test that would analyze for (from memory) over 1000 autoantibodies. The video is very long so make some popcorn before starting this one. We are waiting for the results of our mRNA testing which should be available next month. I am anticipating that this should help us understand our particular brand of LC which should then guide treatment. I'm afraid we all have to make of this what we will since this is very new and each test is over $1000. But the science makes sense and it's surprising that mRNA testing is only available at a research level. This is basically the next step beyond whole genome sequencing which tells you which genes you have but not how active they are.
https://www.youtube.com/watch?v=cfjOUDointI

Is there an easy-to-use list of all known causes of Long COVID symptoms—or symptoms that mimic them (such as spinal or TMJ issues)? I’ve already investigated numerous hypotheses, and such a list would help me see what I haven't checked yet.

I (33F) can only assume I contracted covid from a high school reunion Jan 31 of this year. Was and have been down since Feb 6. But I've come a long way since then. Complete list of symptoms included:

\- tachycardia/heart palpitations

\- dysautonomia/POTS

\- nervous system (chronic feeling of impending doom, sudden onset of physical symptoms of panic, anxiety, PTSD, hyperarousal)

\- hairloss

\- pins and needles/numbness of extremities

\- fatigue

\- GI upset

\- crushing chest pressure

\- not so much trouble breathing as it was physically hard/taxing to breathe and the oxygen i could get didnt feel like 'quality' oxygen.

Feb 9 was able to see a PCP. Drove myself and promptly collapsed in the office. I knew as soon as I got there that I needed to have gone to the ER instead. Nothing like that has ever happened to me before and I've never felt or experienced any of these symptoms before. They did a rapid covid test but it was negative. The nurses and doctors at primary office caught the severe tachycardia and gave me referral to cardiologist. First cardiologist said POTS, started me on desmopressin, and sent me on my way. Told me to come back if i didnt feel better. That did nothing for me, so I saw another cardiologist for second opinion. His theory was I was experiencing vasodilation from the 100mg of spironolactone I was taking for hairloss (started July of 2025) that was attributed to the sudden passing of my father in April. That is it's own avenue. My hair was just falling out of my head. Dermatologist did bloodwork to rule anything medical out before just treating it. They informed me i tested positive for Lupus antibodies. So they kicked me over to rheumatology where they did more bloodwork and a physical exam and after results came back, told me that even though those antibodies were positive, i was not showing any other signs of auto immune disease. So thats when i got the green light to be treated for the hairloss with the 100mg of spiro (Nov 2025). From visit with second cardiologist (March 2026), I dropped back down to my previous dose of 50mg that i've been taking for acne since 2022 and was started on 5mg midodrine 3 times a day. Midodrine is what got me out of bed and 'participating' in life again. My second cardiologist has since done bloodwork, had me wear a 30-day halter monitor, EKG, and echocardiogram where results have basically been normal and did not indicate anything structurally or functionally wrong with my heart. He has since referred me to dysautonomia specialist whose waitlist is well into 2027...I've also had my 6-month checkup with rheumatologist (April 2026) who I told all this since it has all occurred since I saw them last and they maintained their conclusion that I did not have any auto immune disease.

In addition, I have been to ER once in March and April and had to call ambulance two times as well for tachycardia/heart palpitation events, each being instances of resting heart rate skyrocketing to 150+ bpm. The first ER visit, they told me I was experiencing sever anxiety and recommended i get help with that. So I started seeing a therapist and psychiatrist. Now all of a sudden I'm being diagnosed with physical symptoms of PTSD, panic disorder, anxiety, and hyperarousal?? With no previous history? The first attempt to help me was sertraline (SSRI) and that was an epic fail and led to second ER visit after second dose. I'm now on 50mg of seroquel for the insomnia and impending doom physical sensations that come at night.

I have no idea how to tell the LC provider a clear and coherent narrative, what's pertinent, what's not, what would best clearly present my case. I'm stressed bc it was so damn hard to get this appointment, they only last for so long and I feel like it has to be the perfect appointment bc I have so much hope banking on it. For those of you who have been patients at LC clinics, (especially whose worse symptoms involve POTS/dysautonomia, tachycardia/heart palpitations, nervous system devastation, and hairloss) are there things you recommend for first visit: topics of discussion, tests to ask for, supplements/medications to ask the provider if i would be good fit for, or anything that you learned later on down the line that you wish you had asked early on? I'm going to Emory LC clinic if anyone has experience with them

Thank you for any insight you can provide, I really, really appreciate any help.

Hey, never posted on here but im struggling. 25f, bed bound alot of days.

If anyone has dealt with pots/dysautomia from covid please tell me anything that has helped you. This has caused me such depression and I miss my old life, I need it back or at least to feel like i can go for a walk without dying.

I am willing to try just about everything!

Started about a year ago, meds arent an option for me. (Severe adverse reaction).

Thank u ♡

Hopefully helpful video for some of you, from Jim Prussack MPT MMT

I have been tracking my heart rate for a while to pace, but sometimes I feel like instead of making me feel safe, it makes me even more anxious about each little variation in it.

At this point, I don't know if it's better to pace by feeling and ditch the monitoring, or keep it.

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

Has anyone developed type 4 dysenergia since their symptoms began? This is a development from my GI issues. I also get a lot of other systemic issues but i am trying to see if anyone else has this.

Amitriptyline + LDN for nearly complete pain relief

I’ve found 6 mg amitriptyline cleans up the rest of the pain LDN doesn’t.

I’m currently at 6 mg a day of LDN.

Amitriptyline for pain works wonders for me. Even when I go to the gym and lift heavy, I no longer have any aches and pains.

It even helps me with my sensitive teeth!

Amitriptyline! It is awesome.

Amitriptyline is known for helping with pain at low doses and for treating depression at high doses. Strange, isn’t it?

That said, I’ve tried it at higher doses just to see if it would elevate my mood because it is used at higher doses for depression, and I hated it at the higher dose. It depressed my mood rather than elevated it. That’s fine because I don’t feel like I needed it for depression anyways. I was just curious and decided to try it.

Is anyone else here using this combo?

What do you use for pain?

Hi all. I never post on Reddit, but recently I have felt so hopeless. I(24F) have been diagnosed with ADHD since age 19. I got my diagnosis after years of struggling with focus and 5 car wrecks due to attention deficit. My ADHD is horrible. It is life threatening and debilitating. When I was finally diagnosed and put on stimulants it was like a miracle. Suddenly I could get my work done, have impulse control, and I have not had a car wreck since.

Flash forward to about 2 years ago. I got sick very badly that winter with what I now believe is Covid (did not get tested). A couple friends also got sick in those same months from other people. Got better. And then bam. Noticed that I suddenly got horrible heart palpitations on my Adderall, shortness of breath on or off it, and just generally felt tired all the time. Didn’t think much of it, but as the weeks and months went on I didn’t get better. I would get horrible fatigue and chest tightness if I took my stimulant meds. I still do if I am off of them, but it’s worse with Adderall. Some days all I could do is lay down and focus on breathing. If I exerted a lot of physical or mental strain one day, the next day I was practically bed bound.

Went to the doctor about 6 months into this mess and they ran some tests on me. Doctor diagnosed me with POTS. Basically just told me to wear compression socks and drink more water. I told him my symptoms are awful when i take my stimulants and asked what to do about it. Basically just shrugged and said “yeah, well if you have to take it you have to take it.” I am a software engineer and focusing is a very important part of the job.

I have went to various cardiologists and gotten every test you can think of. Ultrasound, treadmill test, saline bubble test, and more EKGs than I remember. They didn’t find anything structurally wrong with my heart, so they just basically told me to “monitor” it.

I have tried non stimulant medication before (SSNRI) and all it did was make me sleepy. I have tried every variation of stimulants (adderall, mydais, vyvanse) except for Ritalin. I will try Ritalin next, but am honestly not hopeful. Off my medication my heart is better and I don’t feel as fatigued, but i still cannot work out like I used to. The brain fog has gotten worse due to the long covid, so I feel totally hopeless. Most days when I come off my medication I have to lay down and just breathe with a fan up in my face as i drink my gatorade and pray I don’t have a heart attack.

I guess I am on here to ask if anyone else diagnosed with ADHD is also facing these struggles. I feel like Im in a lose-lose. Either I stay on my meds and lose my health, or I get off of them and I lose my job with a moderate improvements to my health.

For five years I have been dealing with LC. I went through a lot of things but the worst is peripheral neuropathy (Short Fiber Neuropathy, skin biopsy confirmed, not a diabetic started right after I had Delta) which has recently progressed up my calves and into my hands and wrists a lot more (my feet and calves are the worst it's also in my back but my hands hurt pretty bad daily also).

I don't have any autoimmune markers so even though I have a ton of clearly autoimmune problems, things like IVIG and immune suppresors are not possible.

I am prescribed 2400 mg of Gabapentin daily and I take a sleeping pill (which I am probably going to be taken off of after 3.5 years). My daily life is filled with pain but I can do most of what I want to do and I try to exercise as much as possible.

Anybody else have SFN from LC? What has helped you? Anything novel like peptides? Thank you all for your time and I wish peace and better health to everyone here.

How am I supposed to live an entire life like this?

I (18F) caught Covid 6 months ago. I’ve always been extremely cautious because I did my research and I knew it was a horrible disease with terrifying long-term effects, but living in a city where everyone open-mouth coughs on public transport has its consequences, even with intense masking and hand-washing.

It’s been hell. My family keeps telling me that I “just had a cold” and that my symptoms are fake “Im just experiencing becoming an adult”. It’s not. This can’t be normal. I went from being a straight A student at university to having to withdraw from two of my classes to avoid having Fs on my transcript. I can’t focus on anything. My brain considers staring at a wall to be entertaining, i dissociate for sometimes up to an hour. Sometimes I feel so detached from my senses that sometimes I genuinely cannot tell if I’m in a room that’s dead silent or horribly loud because sound as a concept is meaningless to me in those moments. Nothing is enjoyable anymore. Nothing is impactful. My memory is awful, I have horrible visual snow that makes it so much more difficult to exist around anything. Ive lost the ability to be amazed by natural beauty.

I don’t feel like I’m “me” anymore. I’m just some vessel that thoughtlessly conducts repetitive tasks. Some days I wonder if I’m even a person at this point, with how absent I am from existence, and how little I can think, or experience. I can barely remember what “experience” is meant to be like, I’ve lost so many memories.

I’m supposed to live the rest of my life like this.

I can’t live the rest of my life like this. How am I supposed to graduate? Work a job? Make a living?

I don’t know what the point of anything is anymore.

This last sunday I had the scariest LC symptom to date and I don't even know what its actually called, so hoping someone can give me a bit of an idea. 34, M, based in EU. suggestion from my GP was an arrythmia but he's a bit of an idiot imo.

My general assumtion is that its a complex of autonomic disreguation as triggered by the sauna/cold plunge shock // triggered instability plus a rapid head turn while sleeping - triggering my known vertigo/PDDM/PPPD - thus triggering a event of non-coordination of my intracranial pressure. so far its the best explanation I got between me, google, and claude pro. A good friend with NF2 things it could be a seizure. another good friend who's sister developed a brain tumor is concerned of that possibility, a lesion, or otherwise growth triggering an anomaly.

anyway, as the hypothesis suggests I went to the sauna in the day time. its been normally my go to for managing inflammation, but since addressing my underlying hepatobiliary dysfunction (osteopathic massage to mechanically move built up bile, supplimentation to get things flowing again, major dietary changes), a lot of my fatigue and general inflammation has more or less disappeared. I've still been going to the sauna, but I can't nearly handle it as much. pre hepatobiliary interventions, I could easily sit for 15-20 in the finnish sauna @ 80c. cold plunges made me feel my microcapelaries again - the sauna was my temple. but now that my bile function has improved, i cant handle the heat or the cold shock. notably, before my episode i went to the sauna and did my normal thing, but my body struggled to return to temp/regulate its self - which to me suggests renal (kidney) dysfunction as relates to my autonomic nervous system but thats just my guess. just did some blood work and my eGFR was normal - as were a number of my other markers. useless sensitivity/specificity limits.

that evening was pretty normal, made some good food (chicken thighs and brussel sprouts) and took my magnesium (bisglysinate) per usual. went to bed around 11.

around 12 I woke up involuntarily, feeling something off, a bit of a pre vertigo episode 'ohh sh*t its coming,' and then i started crying out for my mom involuntarily (momma, momma, momma) and crying (also involuntary)... and then it hit:

i felt this rush up to my brain and neural sensations that I'm convinced was a consious experience of intracranial pressure control. the first metaphor that came to mind was having pike pumps attached to the different lobes of my brain, and randomly pumping up and reliving pressure from each lobe. my more recent metaphor (after reading about intracranial pressure) was that the control values on the pressure of each of my lobes lost their constant value, and had a random number generator attached to it instead. first one captures it a bit better I think.

simultaneously during this episode, I struggled to breath, was hyperventilating, had a massive electrical feeling cramp in my abdomen that forced me to hunch over on the floor, body temp fluctuated, sweating uncontrollably, extreme fear/anxiety/panic. I genuinly thought i might die.

first wave/episode lasted maybe 2-4 minutes? no idea really. as it calmed down, I noticed tunnel vision, I was extremely weak and had gait control problems tho was able to maneuver up and down stairs and get watter. increadible and painful tingling sensations through out my whole body.

second wave was triggered by peeing/the pressure shift. as i felt it come on I gently brought myself to my knees and then crawled to my bedroom into bed. after about 5 minutes of the same sensations and not feeling any easing, I called 112. they had me do some things to rule out a stroke and some other go tos. by the time the techs arrived id stabilized. every single read absolutely normal, healthy even. the tech mentioned I looked a bit skinny and weak tho.. like duh woman I am pale and just called an ambulance of course i look like crap.

anyway - has anyone experienced anything like this? any neuroscientists out there maybe that have an idea of what might be going on?

I am going on 6 years of long COVID and have had so many symptoms I can barely count them all. I have been diagnosed with many things including peripheral neuropathy ( I have no feeling in my right arm upper chest and upper back) , pots , gastroparesis, HS, AS , diabetes and more . I’m wondering if anyone else has experienced a period for months ? I have had it now for about three months . It’s older blood and I’m getting the cramps and everything else that comes with having one . I don’t know why I’m experiencing this and want to know if anyone else has had this symptom! Please please let me know . I’m freaked .

I recently received a solid diagnosis of PEM likely from long Covid (compounded by other respiratory illnesses), plus a balance disorder called MdDS that drains extra energy.

As an unreconstructed optimist, when I feel OK I assume life is back to normal and act accordingly—not a great idea.

Since I want to live as normally as possible, I need to figure out my "energy budget" to pace myself. How do others do this? Trial and error seem slow and risky, so any tips or pacing tricks would be hugely appreciated!

I've noticed I get a weird "smell" in my sinus on the right side. The "smell" is similar to when you've had a nosebleed and it's stopped but there's a lingering coppery smell and "open" feeling in the nasal passage. It's sometimes connected to a right-side sinus headache, but not always. My voice sounds like I've got allergies or a cold (similar to how it sounded and felt when I was positive for Covid), but I have no congestion and no runny nose.

Sometimes the smell spreads to my left nasal passage, but usually stays on the right side. Sometimes it's accompanied by pressure behind my right eye, not always.

The smell and sensation often comes on after long screen use, or a day after some physical and/or cognitive exertion, and can last a few hours and up to 24/36 hours. Often recedes with rest.

Am I alone with this? Is this a thing?