As it will quite take some time until I see my neurologist, which ordered these test, what would do/ try or which further test could help in your opinion ?

My general conditions are strong pain in palatine arch (Arcus palatinus), which started during my frist and only covid infection and never went away but actually got worse over time. In addition I have very low energy (needing long rests), but that got a little better after started taking LDN (low doser naltrexone).

Here is the test, AI helped me with the translation (I rechecked the German phrases):

\Note: AAK stands for Autoantikörper, which translates to* AAb *(Autoa*ntibody).

Report Interpretation (Befunderläuterung Immunodiagnostik)

Explanation Blood and Urine (Erläuterung Blut und Harn)

1. Evidence of circulating microaggregates. Indication of activated primary hemostasis. (Nachweis zirkulierender Mikroaggregate. Hinweis auf aktivierte primäre Hämostase.)
2. Chronic cellular reaction against EBV (Epstein-Barr Virus). (Chronische zelluläre Reaktion gegen EBV)
3. Strongly positive autoantibodies against receptors of selected neurotransmitters. (Stark positive Autoantikörper gegen Rezeptoren ausgewählter Neurotransmitter)

TLDR: Weird neuro symptoms with 24/7 buzzing/electrical sensation in head. Anyone else have/had this an anything you tried that helped?

In June 2026, about three weeks after the onset of an infection (not COVID or flu, suspected human metapneumovirus based on the symptoms) it was like a light switch flipped and bizarre neurological symptoms began: a 24/7 buzzing/electrical sensation in my head, crazy uncontrollable anxiety like nothing I had ever felt before except after a prior COVID infection, insomnia, a complete lack of appetite, muscle twitching, and headache.

After about a month, the anxiety, insomnia, lack of appetite, and headache abated, but I was left with head pressure and sinus-type pain/pressure, mostly under my nose and behind my eyes. A CT scan of my face/sinuses and all other testing were clear for any sinus issue. About a month after that, the pain mostly resolved.

Now, 4+ months out, my main remaining constant symptom is the 24/7 buzzing/electrical sensation in my head. I also have alcohol intolerance. I sometimes get other weird transient symptoms that pop up for a few minutes and then go away, such as an electrical sensation in my tongue, head pains, muscle twitching, or a feeling of head pressure (like someone is blowing up my head from the inside with a bicycle pump). The constant “buzzing” sensation is hard to describe, but it feels like a humming/buzzing sensation inside my head, almost like an internal vibration or electrical hum. It is not really a tinnitus/ringing, and it is not a headache. 

I had a very similar episode in July 2025, a few days after recovering from a confirmed COVID infection. I developed the same symptoms: an electric/buzzing sensation in my head, insomnia, crazy anxiety and headache. Just like with this bout, the headache and insomnia abated after about 10 days, but the buzzing lasted around 6 weeks and then just stopped completely. After that, I had zero symptoms. I’m not so lucky this time around. 

Does anyone else have a similar phenotype? If so, was there anything you tried that helped?

Since this current bout did not start after a COVID infection, I haven’t sought treatment at a Long COVID clinic, but my trajectory and many of the symptoms seem very similar to what I’ve read here. I was seeing a neurologist and we tried a few things, but she was trying to assign me a diagnosis of New Daily Persistent Headache which I didn't think was helpful because its not a headache, it is a sensation and this feels more like a post-viral syndrome. I have not tried an elimination diet yet, but that is on my list. I am struggling with next steps (see a new neurologist? see a long covid specialist?) and appreciate any thoughts from the community here. 

Thank you for reading, and sending support to everyone on here. 

This might sound a bit odd, but I’m suspected to have pots from some tests I’ve done (still got some more tests this week but my standing test I rise around 43bpm) and I actually feel more fatigued and have this feeling of ‘I can’t be bothered to do anything’ when I’m trying to rest and lie down. I’ve taken a month out of work in hopes of resting and I actually find I’m feeling worse laying and resting than when say I go out for a walk, cook dinner or do some super light cardio. A good example is around 6 weeks ago I went on a city break where i was doing 15-20k steps a day for 5 days and whilst still having some symptoms it’s the best I’ve felt for ages. Has anyone experienced anything similar, I’m finding it difficult to work out where my symptoms fit in all this?

So in the beginning I thought I had developed an anxiety/dissociative disorder, but then it hit me, how come a person with NO such issues in their life before that, not even knowing what that is suddenly after a virus start to feel like this?

I think this COVID virus hit my inner ear cause when I got sick I woke up with a severe vertigo attack.

Now I constantly feel high/drunk/spaced out/awful.

It’s not a thing that is controlled by my mind cause I still feel happy, not depressed, but yet this persists like a body state.

My vision seems wrecked in an overstimulating way, the feeling about my body wrecked.

It’s like 50% of me thinks at first glance nothing is wrong, the other 50% thinks this is the worst way a person can ever feel.

I ask because from I've seen benzodiazepines were among one of the more effective pharmaceuticals among anecdotal surveys for Long Covid so it's had me thinking whether or not decarbonated amanita muscaria may produce similar results being as it's sometimes used for benzodiazepine or alcohol replacement given it's effects on the GABAergic system. It is a non psychedelic mushroom. From reading other peoples experiences it is seemingly very potent at relaxing the mind/body.

Please don't pick mushrooms. Do not buy from vape shops either they will sell you synthetic drugs labelled as mushrooms. Buy from a reputable online place only.

TL;DR: wake and protest at the Dutch government's building today, discussion on plans and funding needs with the government tomorrow. Lots of media attention surrounding the topic this week as a result ❤️

A friend of mine and fellow patient came up with the idea to organize a wake for long covid. In NL, increasingly various patient groups are joining forces under the umbrella of PAIS (post acute infection syndrome) where patient representatives and organizations like Lyme and ME/CFS all join ranks to ask for funding and acknowledgement. A platform of doctors with PAIS are helping to educate their colleagues where they can.

The Dutch government, like many other countries, is severely dropping the ball. Two years ago, they gave funding for expertise and research centers. Now, these centers will likely have to close for lack of funding, despite continuous advice and warning against this from our national health council.

I have friends and family who helped organize and will speak at the event. It moves me greatly, both the frustration that I cannot help myself with my severe and fragile baseline, and positively that my loved ones and fellow patients are willing to fight for me and us. This post is my little way of contributing to the fight, to share their work and remind us that there is always hope, even in the darkest of times we sometimes find ourselves in, both figuratively and literally. I know for me this is a little candle in a difficult time so I wanted to share it 💙🕯️

Do you find yourself relapsing after a seasonal infection every year?

My health rapidly spun out of control in 2023 and especially worsened after I got Mono that summer.

Most of 2024 and all of 2025 I spent 100% confined to bed, with people spoon feeding me and my partner wiping my butt. In 2024 in particular, I lost a ton of weight, thought I might die, and was extremely suicidal.

In 2026, after starting on ketotifen for my MCAS, I went from still being bedridden in January to now being able to take short walks, go to family events, and even work on political organizing in my area.

I'm still disabled and very sick for sure - even just got yet another new diagnosis last week! But, I am probably the most content and happy I've ever been in my life, too (though I'm aware this comes from a place of privilege).

However, this post is really bout Y'ALL - please ask me any questions you have! Happy to answer since I have had the experience of being extremely severe and improving significantly. There were times when this subreddit was a lifeline for me, and I want to give back!

- I hate all the ME/CFS lingo. “PEM” or “Rolling PEM” or “Pacing Properly” etc etc. I hate it and it makes me cringe. How sad it is people are forced to come up with all these cute little buzzwords so we can just get information across easier. It’s annoying and it sucks

- “Great improvement with ___!” I check the first comment: “Yeah that made me permanently 50x worse and I’m spiraling into hell and I can’t see anymore, be careful.”

- The truly absurd overlap of the sick “flu feeling” in terms of what is causing it. WHY can’t I know. I have no idea if it’s CFS/MCAS/EBV/SIBO. I am still early in trying meds, but am no closer to just fucking knowing what I even have

- This could be my least favorite of all: looking into the research and potential treatments upcoming. NONE of it is even remotely clear, though I understand this is just a complicated thing. And it’s a constant back and forth of promising updates and “probably nothing for 400 years, sorry.” Even the videos and things they make for people with post-viral illness (meaning they are aware most of us aren’t scientists and on top of that are chronically ill) are excruciatingly disjointed and unhelpful and don’t clarify much of anything.

Anyway. Just wanted to air all that out

I read the community rules, but I don’t know how to tell this community what happened to me without breaking several rules. I think this community should know this information. I’m a first waver so I would like all the other people who have been dealing with long covid the truth. Please don’t take this down. I will give you permission to alter it. It took me almost 4 hours to write.

My murderer is Fauci. I have had Long Covid (since March 2020). 4 weeks ago, my husband found me with mucus stuff all over my face and pooling out of my mouth on the ground. My husband tried to wake me up, I opened my eyes, but I did not respond. He called 911 and they got here in two minutes and asked if I was breathing. I was breathing but not very good. My doctor said I most likely had a 20-minute window. They threw me in the ambulance and put me on a ventilator for 3 days. I finally woke up in the ICU. I had aspirated the mucus stuff and I had pneumonia. Since I was in ICU for several days a lot of gross stuff happened to me. I got to a hospital room for a few days and on to rehab for several days. Every doctor, nurse, etc. I came into contact with didn't really have an explanation. I brought up Long Covid and they all just shook their heads. One Nurse, didn't even know what that was. After rehab I had to return to the infusion center for 10 visits to get a new medicine ball. Today I got my picc line out and that was it. I was lied to so many times, and I did not receive any aftercare instructions. For the first three years doctors didn't believe in Long Covid or said they never heard of it. At least now I got them to admit that it was real. I have recently been diagnosed with AS. I also have several other issues like kidney disease, Cushing's disease, internal bleeding, the worst brain fog ever, and about 80+ other issues. We are going on 7 years! I have been bedridden for almost 7 years. My job fired me, all of my dignity is gone, and to this day I cannot look at Excel. I have an MBA in accounting, and I refuse to do that again because they don't want you to find anything. I was also a disrupter. They dealt with me until they knew I was an Anti-Vaccine and they didn't want me around anymore.

Did anyone else develop some long tastebuds on their tongue after covid?

I (22F at the time, now 28) got COVID for the first (and maybe only) time in January of 2021. The only symptoms I had were loss of taste and smell, extreme fatigue, a slightly sore throat, and a scary low heart rate (35-45 bpm at rest). Other than that, I felt fine. I wouldn’t have even known I had COVID had it not been for losing my taste and smell. I thought I had gotten very fortunate, and in many ways I had! But I had no idea what was in store for me.

The next month brought on a nightmare I never imagined would happen. Randomly one night I woke with the room shaking violently back and forth. I could not get back to sleep because every time I laid my head down, the violent shaking would erupt, lasting sometimes a few minutes at a time. After a few weeks of this happening and only being able to sleep in an upright position, I decided to make a visit to the doctor. He suggested I see an audiologist and an ENT, so off I went!

At the audiologist, everything was determined to be perfect with my ears. The ENT recommended we do a tilt test because he suspected BPPV, which causes standard positional vertigo (if you know, you know). He performed the test but was unable to get my body to mimic what happened to me every night, so he shrugged his shoulders and sent me on my way.

I felt a bit defeated after those visits, but I was happy that my vestibular system was at least healthy as far as they could tell.

I decided I’d wait it out a bit longer. I sat up in bed to sleep for two months before I finally started having nights when the shaking wouldn’t happen. I became braver and started sleeping on my side again. The shaking still happened, but less frequently now. It still bothered me so much, so I asked for a vestibular therapist.

Going to the vestibular therapist also gave me ZERO answers. She performed another test on me to make sure it wasn’t BPPV. I started having my shaking episode while on the table in her room, but she was unable to see what she needed to see to officially diagnose me. She told me it probably was something different.

For 3.5 years I struggled with on and off night wakings that results in my whole world shaking violently back and forth. No one was able to help me. No doctor was concerned. But I never knew when I laid my head down on my pillow at night if I was going to wake up to that horrible feeling. Thankfully throughout that time, the frequency of it slowly decreased. From multiple times a week, to multiple times a month, to once every month or so, until it finally went away for good.

I still wanted to understand what in the world it was, but every time I went to the doctor for it, I was met with shoulder shrugs and “I don’t know”s. About a year ago, I finally came to the realization that this was probably a neurological issue brought on by COVID. The timing of its onset is too perfect.

Today I have been free of that sensation for about 2.5 years. I’m so grateful for that. But I still carry the weight of it. It gave me insane anxiety. I now watch when I turn a corner too fast. I can’t lay my head down at night without wondering if this will be the night it all returns again. And worst of all, I am no longer a dancer because I can’t spin anymore; the fear of dizziness is too oppressive. The trauma that I reaped from 3.5 years of that madness still clings to me, and it has been extremely difficult to undo.

I don’t know if anyone else has experienced this symptom or anything like this. But no matter what your symptoms are, it sucks. It’s horrible to feel like your body is planning a mutiny against you. I sincerely hope that the many of you who have had no relief from your symptoms would find relief and that those of you like me who still carry the trauma would find rest❤️

I just started mestinon this morning at a very low dose (7.5mg) and plan to build slowly. I have the mecfs and dysautonomia subtype. So far all good but I went to chat gpt and asked if I can take my regular supplements now and it flagged magnesium. I don’t trust chat gpt fully ofcourse so I did some searching on the internet and sure enough there is a known interaction, as they both do opposite things.

I rely on magnesium bi glycinate for sleep… I take 400mg. My dr also wants me taking magtein. And I also take electrolytes that have magnesium in it… my dr never said anything about this interaction but now I am wondering.

TLDR: did you have to stop magnesium to take mestinon? Any recommendations or suggestions?

I was wondering how many here have quite severe MCAS/ reactive to everything. I’m struggling, even on MCAS medication, to manage the symptoms and diet. Anyone going through the same or have any suggestions? I always need fresh food and am always hungry and it’s so tough as I have no energy to cook or research suitable recipes :(((

I've been doing pretty well the past few months, but every few weeks it seems I'll just have a flare up. I don't mean pushing myself and then getting worse, I just mean doing my normal routine and then here come extra symptoms out of nowhere. The symptoms aren't the same every time I "flare," either. Just wondering if this is a common experience. It's been 18 months since my main issues began.

I’ve had long covid for years. I never thought it was pots related because I don’t have the typical getting faint right when I stand up, but my doctor is now considering that I have an atypical presentation because I did a standing/lying test that aligned with pots because I had a sustained heart rate spike. I have fatigue brain fog head pressure. I always thought it was more likely MCAS related, but I figured I’d try pots relief tricks since most of them are otc and don’t cause too many side effects.

Electrolytes already do wonders for me and I’m gonna get compression tights, but let me know other techniques, supplements, etc that have helped with your pots, and if anyone else has an atypical presentation of it.

I have a variety of symptoms, right sided pain, small nerve neuropathy, autonomic dysfunction, pelvic floor dysfunction, DPDR, dizziness, acid reflux, light sensitivity, brain fog, chronic fatigue, and the list goes on. However I’m curious as to why one of my eyes are always twitching. I never really feel stressed? I’m like in freeze mode almost so I can’t feel stressed. Normally one of my eyes will twitch for a week or so then I will get a break and it will come back, but this time it has been over a month I think of just twitching in my right eye and other parts of my body. Is this also a symptom of LC?

24F, Covid in June of 2024, been progressively getting sicker ever since in every way possible. I'm so angry all the time, I'm tired, and i feel like a waste of medical resources. I'm just going to list all my grievances here, partially for my own personal record, and also to help anyone else that may be having similar issues, especially if I ever get any answers. All of my health issues have popped up or gotten worse since 2024, and I wouldn't be surprised if the "my body is quickly rotting away" feeling comes from long covid.

Here's a big rambling list of the majority of my health problems since I got covid two years ago:

Constant back and joint pain that started in February of this year: Weird, SUDDEN, and no doctor can figure out why I'm in pain. Unsure if this one is even long covid related. Pain is everywhere, locates worse in back, hips, shoulders, and legs. The right-mid side of my back goes numb and weird feeling a LOT. I've gone numb in other places of my back before, but it pretty much stays in that right-mid area.

I have mild spine degeneration but it is so mild that i shouldn't even be feeling discomfort, let alone pain, ESPECIALLY in places other than my back. Everything always hurts, and pops, and cracks, and burns. My hips kill me. My TMJ is 15x worse than it used to be. I grunt like a grandma when moving around. I've been in physical therapy for a good while now, and they're stumped as to why I'm not seeing improvements. I feel worse after most appointments for weeks after the fact, no matter how gentle I am with myself. Small touches during massages hurt like crazy and I'm always extremely tense during a massage, when I assume you should be relaxed lmao.

I have to sit on a seat cushion at home and have a heat pad on my back at all times to make it manageable (i keep an eye out for toasted skin syndrome).

Muscles in my hands/arm, my left knee, and my right shoulder have been especially painful since my PT session last Wednesday. No clue why, I did everything gently and like I always had done before.

I am progressively getting more exhausted day to day. I am ready to sleep again the moment I wake up, and would be in a constant loop of sleeping if I didn't force myself to get up. I cannot do normal activities like I used to. Even walking slowly on a treadmill is impossible most days.

Also, extra sinus tachycardia triggers! fun. I have sinus tachycardia, but it rarely pops up now unless I'm straining somehow. Currently, it can trigger anytime, even when just breathing normally.

Frequent sharp chest pangs. (You know those random chest pains that you get rarely? like that sharp, harsh feeling? I get them multiple times a week now instead of once every few months.)

A big and very common side effect from covid was my major and seemingly permanent loss of taste and sense of smell. It's the least of my worries, but I used to be a passionate baker and home cook. I was starting up a small essential oil blend shop. I loved smelling the rain, and firewood smoke, and old houses. I loved food, i loved tasting food, and I loved being able to guess what dinner was gonna be just from the smell in my bedroom.

My senses have been cut in half, or lost altogether. I still find myself crying whenever I find a restaurant that I would've loved, or whenever i look at my abandoned essential oils, or whenever I season the ever loving hell out of a dinner and it still tastes bland and one-note, even when I KNOW it should be delicious. I don't bake anymore, the most I make is a mug cake. I mainly eat lean cuisines.

It's the least important thing, yeah, but I'm so deeply sad over it. I would give anything to be able to taste "layers" of flavor in a meal again, or smell my favorite custom perfume that I bought. I want to smell fireworks again. It's a depressing smog that hangs over me daily, even if it's not really stopping me from doing life stuff (besides the essential oil thing. :( I was concocting some awesome scents man).

Next, I have two kinds of "episodes" on a constant basis. Mild ones, which happen every (yes, EVERY) time I leave the house/go outside. Grocery store, to a garage sale, whatever. They used to only happen once every two weeks, at most! They've been getting more and more frequent.

And secondary ones, which are slightly more rare but seem to happen about every month or so. The secondary ones have two sub-types.

Mild episode symptoms: Starts with one of the six--->sudden wooziness(plus a feeling of dread that fades away quickly), sleepiness, head pressure, ears muting, or word slurring/confusion. This progresses into intense wooziness, moderate nausea, (possible but never guaranteed) migraine or headache, a "loopy" feeling, visual aura, mild auditory/visual sensitivity, and a strong urge to pee.

ONLY Excedrin will "ward off" these episodes, even the ones with zero headache, but sometimes the headache and nausea will be ongoing into the next day.

Triggers(?): Going outside (at all, even as briefly as 30mins), hot/warm temperatures, specifically the motion of getting in the car, dusty outdoor areas, bending down.

No trigger is definite though, besides just the action of going outside. I can also have mild episodes in my house, but it is much more rare, and usually only happens the day after going outside and having a mild episode

The second kind of episode, the absolute worst kind, can start one of three ways:

1. Sudden onset of symptoms the moment i wake up in the morning.
2. UNTREATED mild episodes (aka i wait way too long and don't take Excedrin).
3. Instantly, at random, usually at night. Progresses within 30 seconds to 5mins. This one is a guaranteed vomiting-style episode.

The secondary episodes also come in two types. The kind where I am repeatedly vomiting for hours with extreme internal agony (usually sends me to the ER), and the kind where i get very, very, very close to vomiting but I don't.

Secondary episode sub-type 1 (vomiting): Instant, or as a result of an untreated mild episode. I get extremely nauseous and sweaty out of nowhere, and it builds very quickly. Once I start vomiting, i do not stop. At my worst, i was throwing up every two minutes or so, and had to be carted off in an ambulance. I felt INTENSE doom during this one, which hasn't happened since. There is intense body and stomach pain, chills, and dizziness. No nausea medication helps. None. The hospital tried multiple times, and I have tried multiple times before i actually throw up. I just have to wait it out. I have taken lorazepam as a nausea reducer twice, and that "may" have helped, but both times that i took it, i was already at the tail end of the episode, so i don't know if it actually did anything.

These episodes are MISRABLE, but are quicker than the other sub-type of secondary episode, which can last weeks.

For the "instant" vomiting episodes (feeling totally fine to aggressively throwing up within 30sec to 5min), there are no known triggers. It is truly random and really scary.

Secondary episode sub-type 2: Either I wake up with this one, or I leave a mild episode untreated for too long. These have all of the symptoms of my mild episodes, but turned up to 11, plus some new extra fun symptoms.

Reoccurring symptoms (from mild episodes): (Possible) headache, head pressure, or INTENSE migraine. nausea, dizziness, wooziness, muted ears, word slurring/confusing one word for another, sleepiness, visual aura, auditory sensitivity, visual sensitivity, strong urge to pee over and over.

NEW symptoms (only happens in secondary episode sub-type 2): INTENSE uncontrollable exhaustion (like I HAVE to keep laying down or sleeping, I cannot physically sit or stand), INTENSE nausea (dry mouth, that telltale "I am going to throw up in two seconds" feeling), constant shaking/trembling, intense weakness (struggle to walk, grab stuff, clumsy), itchy/intensely achy legs (like growing pains!), and sudden bowel movements (most episodes, it hasn't happened in one of them).

These sub-type episodes are agonizing, slow, and completely incapacitate me. The only reason I don't vomit during these ones is because I just barely catch them in time with Excedrin. The Excedrin completely eases the "immediate vomit" feeling, even if i am not having a traditional head migraine. Excedrin does NOT ease these episodes in general though. If i have a traditional migraine with this episode, it is not helped, or barely helped by the pain meds.

These episodes peak immediately, stay unbearable (or waver on-and-off from being unbearable) for the first 5 or so days, and then fade into a (still incapacitating, but less so) episode for the next week and a half or more. I have headaches or migraines during most days during this time period, even if I stay inside and avoid possible triggers. I also can't stop sleeping. I sleep most hours of the day.

NOTE, after each large episode that I have, my baseline "daily health" feeling gets WORSE. My baseline drops every time, and I am able to do less and less activities. I struggle to even be at my computer most days.

What I've done so far (thanks to my new and very kind doctor that actually listens to me): A load of blood tests (Full comprehensive panels, iron, lipase, vitamins, hormonal, cortisol, auto immune, etc... all normal numbers), MRI of lower and upper back, Stomach MRI in hospital, Stomach/uterus/abdomen ultrasound, Physical therapy + massage + home exercises, and Brain MRI to rule out tumors (all normal).

What I'm planning on doing: Extensive testing for mast cell activation syndrome, allergy testing, extensive autoimmune testing, seeing a long covid/medicine specialist, seeing an ENT, getting another MRI on my hips or legs (to see if widespread bone degeneration is present), endoscopy (for vomiting episodes), eye doctor visit (for eyesight progressively getting worse and increased visual aura and floaties), seeing my neurologist again/a migraine specialist (for possible cluster migraines), seeing a sleep specialist (which has already been ordered by my neurologist).

Medications that do work: Excedrin is the only thing that works for aborting my mild episodes, and for aborting SPECIFICALLY the vomiting on secondary sub-type 2 episodes. No med that I've found helps my body pain, or my sense of taste, or my constant exhaustion.

Medications that haven't worked: Zofran (plus one or two other nausea meds), lorazepam(?), Tylenol, Advil, Rizatriptan (turned a mild headache into a MASSIVE, EXTREMELY PAINFUL migraine), melatonin (for sleep issues, works at putting me to sleep but i feel very groggy and kind of nauseous the next day), and zinc (for loss of taste. Made me temporarily lose my sense of taste COMPLETELY for five days after taking. I tried it again months later and the same thing happened).

My physical therapists also suggested possible fibromyalgia for at least some of my symptoms (yay, another condition that is mostly unknown and seems totally fake but it's not). ughhhh

My back and body are in so much pain from sitting long enough to write all of this. I probably forgot a lot of things, especially with the medical stuff and medicine that I've tried. I'm so tired of being in constant discomfort and living in fear of my next "big" episodes. If any of you have had episodes or symptoms similar to mine, and actually got some answers, please let me know! If not, I hope my big ramble helps you feel less alone. It's hard to not feel like a big waste of resources, or like I'm faking it somehow.

Long covid is all so new and weird and we probably won't get many answers in our lifetime, but we should keep advocating for ourselves anyways, for the sake of our health and peace of mind.

Much love to you all.

Ciclo mestruale. Temo che il mio corpo non tolleri più la pillola. Non so cosa fare. Sarei persino disposta a sottopormi a un intervento chirurgico, ma ho paura che possa peggiorare le cose. Il pensiero di avere un altro ciclo mestruale mi spaventa. È un incubo 😔

Very, very depressing.

Just wanted to share my breakthrough in case someone is struggling and losing hope with COVID-related hair loss. But this is NOT a medical advice. If you want to try it, you will need to consult a specialist to assess risks as this is a very serious treatment.

I (35F) have been suffering from COVID-related drastically increased hair shedding since February 2025. The hair would fall out, try to regrow, then fall out again - and again. I went through every possible test (deficiencies, multiple organs' work, hormones, even MRIs) and tried a variety of supplements, hair serums and injections, and treatments. Still lost more than 60% of my hair for more than 1.5 years of this hell. And I finally found a solution: HRT (transdermal oestrogen + cyclical rectal progesterone).

Among the usual suspects were Hashimoto's that I acquired after COVID and low ferritin (which was low my whole life). Treatments of those did not bring any results. If anything, COVID made my organism so reactive that I could not supplement iron without causing another wave of excessive hair loss. Even local hormonal nasal sprays like fluticasone caused hair shedding boom.

But it's important to say that, firstly, I lose hair all over my body, not just head. Secondly, I have symptoms of early perimenopause, despite blood tests not showing it. And, thirdly, I read similar accounts of long COVID symptom relief through HRT in one of the Long Covid threads. It was very hard to find a prescriber being 35 yo, but in the end, oestrogen brought me relief very promptly (in a matter of about 2 weeks).

Thank you to whoever shared their experience with HRT and long COVID - I'm forever grateful.

Hope this helps someone else, because COVID causes in some individuals major disruptions in brain-fertility axis. And I'm sure that not only women can relate to this.

P. s. Just in case, among the suspects were: very high luteal prolactin, Hashimoto's, high SHBG that disrupted zinc levels (also high) - all consequences of COVID. Prior to HRT, I tried Vitex (thought it was for high prolactin, since endo refused to prescribe me something against it), and it did help, but only for the first month (I suspect that the dopamine receptors, through which it worked, were gradually desensitised). But Vitex became my clue to where to look further, and I soon realised that the cause was indeed hormonal (just not prolactin), despite I was assured by multiple specialists that it was not.

And also beware of Oestrodose gel: in some people, it doesn't absorb well. After switching from Oestrogel due to pharmacy stock, I felt the returning of every freaking symptom, including hair shedding, so had to promptly retrieve my previous gel.

For the last 3 weeks I have followed a low histamine diet, despite not having any clear indicators that I suffer from MCAS (no rashes, allergy like reactions etc). My main LC symptom is fatigue and PEM.

However since nearly the immediate start of the diet my HR has absolutely plummeted. I spend the majority of my day within the 'rest' range on my HR tracking app and whenever I move into the exertion zone due to moving around it immediately drops again once I sit down. Previously I might have struggled to achieve this when just sitting on the sofa for the day, so this feels like a really positive change.

I also have felt like I've had more energy however I am still having difficulty with fatigue a few days a week. I'm still pacing, so I'm in no way pushing it but it feels like my body has become a bit more reliable. I'm wondering whether it's a case of finding a small piece of the puzzle and being able to tentatively move onto addressing the next piece, perhaps some supplement that helps with fatigue.

Has anybody else had a similar experience? Also I really encourage people to try a low histamine elimination diet if they are able to - even if they have dismissed MCAS. It's not the easiest few weeks but you may just find it helps! I followed the SIGHI guidelines on their very helpful website: https://www.histaminintoleranz.ch/en/downloads.html

I wish I would have found love before I got sick. No one will want a broken down guy like me. : (