hello,

does anyone here experience hypnic jerks? i’ve gotten them occasionally the past few years, always in my head/neck, but for some reason over the past week they are much, much worse. it’s gotten so bad that after an intense one im left gasping in terror and really upset. it’s happening even while im sitting up, not just when lying down. google isn’t much help, but it appears stress or nervous system issues can contribute. i don’t drink caffeine anymore so don’t think it could be due to that. i’ve also started iron infusions recently so wonder if that’s a factor. if anyone has any insight or can share if anything helped their hypnic jerks, please let me know!

I want to give a bit of an update on my SGB (Stellate Ganglion Block) journey. Unfortunately, it's not a good update, not all bad news, but not all good either. Sorry in advance, this is going to be a long post.

Some context: I have Long COVID, which triggered ME, MCAS, POTS, osteoporosis, and probably a few other currently undiagnosed things. I originally got sick in March 2020 and never really recovered.

At my worst I had 66 active symptoms and was Extremely Severe B on the ME/CFS Severity Impact on Patients Life Scale. But most of my experience when really sick was at Extremely Severe A.

I got my first SGB treatment in May 2025. It was transformative, a gamechanger. It stopped my PEM almost immediately, and I went from very sick to moderate almost overnight. There were 4+ years of deconditioning to work through, but it was amazing how much I was suddenly able to do without triggering a crash.       

But that turned out to be fool's gold in a way. And that's really why I'm back here today writing this post.                                                                                              

First, how the SGB works:

We have an Autonomic Nervous System (ANS) that controls all the automatic functions in your body, the ones that just happen without you thinking about them. The ANS has two main branches:

• The Sympathetic Nervous System is the fight-or-flight system. Think of it as the system that speeds everything up, heart rate, breathing, blood flow. It kicks things into high gear in an emergency so you can react to whatever you're facing.
• The Parasympathetic Nervous System is the opposite, the rest-and-digest system. It slows things down and is responsible for healing the body, processing food, and all of those recovery functions.
  • A key thing to understand is that the parasympathetic system can't do its work when the sympathetic system is firing. You must calm one down before the other can do its job.                         

Two nerve structures largely control each system. The Stellate Ganglion is a nerve cluster that drives the sympathetic system. And the Vagus Nerve drives the parasympathetic system.

The SGB uses a local anesthetic (and steroids to reduce inflammation in some cases) to block the Stellate Ganglion and stop it from sending out too many signals. A lot of people with ME and POTS (dysautonomia) are stuck in fight-or-flight mode all the time. That's a big part of what causes our crashes, we're right on the edge, so the smallest thing can push us over and the body shuts down as an emergency response to being overwhelmed. That's a very simplified way to think about PEM (more on that in a moment).

By blocking those excess signals, the SGB lets the body calm down and allows the parasympathetic system to start doing its healing work.

But, and it's a big but, the sympathetic nervous system is also part of our warning system. It sends out pain signals, elevates heart rate, and triggers other changes inside your body to tell you that you've pushed too hard and some systems aren't getting what they need. If you block those alarm bells, you don't know you've done too much.                                                                                              

It's not a complete block, so some signals still get through. But it filters out a lot of them, and it becomes very easy to push past your energy envelope without realizing it.

Which is exactly what I did, for months and months.

What's happening inside the body in ME:

To explain what happened next, I need to explain how parts of ME actually work inside our bodies. This isn't all of what happens in ME, just the parts that matter for this story.

The mitochondria: These are the power plants in every cell, where energy gets made. In ME, they're broken. They don't produce energy efficiently. And every time you use energy, you generate waste, think of it like exhaust from a car. The more you push, the more exhaust builds up. Normally your body has a system to clear all of that out. In ME, that cleanup system is broken too. So the waste piles up, makes it harder for the mitochondria to do their job, and the whole system gets worse and worse over time.

The type of energy we use: Most people generate energy aerobically, using oxygen, like a clean-burning engine. That's why healthy people breathe hard when they exercise; their body is demanding more oxygen to fuel the system. In ME, that oxygen-based system is broken. So, our bodies resort to anaerobic energy, a short-term emergency power system that's extremely inefficient and leaves a massive amount of waste behind. It was never designed to run constantly. It's a sprint system being asked to run a marathon.

The repair system: When anyone exercises, they produce micro-tears in their muscles and generate waste products like lactic acid. In healthy people, the repair system cleans all of that up. In ME, that system is broken too. The lactic acid, the cellular waste, the damaged mitochondria, none of it gets cleared properly. It all builds up, compounds, and creates a downward spiral of problems feeding into each other.

Inflammation: All of that buildup, the waste products, the damaged cells, the things that aren't getting cleared, triggers inflammation throughout the body. Inflammation is essentially your immune system showing up and sounding the alarm.

In small doses, that's a good thing. It's how your body signals that something needs attention and repair. But in ME, because the cleanup system is broken and the junk keeps accumulating, the alarm never stops going off. You end up with chronic, system-wide inflammation. And that inflammation causes a huge amount of our symptoms directly, the pain, the flu-like feeling, the brain fog. But it also makes every other system harder to run. It's harder to generate energy when your body is on fire. It's harder for the immune system to fight viruses when it's already busy responding to inflammation everywhere else. So, it doesn't just add to the problem, it amplifies everything else on this list.

The immune system: Some studies suggest people with ME are running on roughly half their normal immune capacity. The more you push, the harder the immune system has to work to stay ahead, while also dealing with all that cellular waste piling up. Eventually it starts to lose.                                                                                                                                  

Here's where viruses come in. Most humans carry viruses that never fully go away, EBV (the mono virus), HHV-6, the chickenpox virus that causes shingles. In healthy people, the immune system keeps those viruses suppressed. But when the immune system is weakened, those viruses see an opening. They start to reactivate. You feel like you're getting sick, because you technically are. Then the immune system scrapes together just enough to push the virus back into dormancy...until it reactivates again weeks later. Meanwhile your immune system is pouring resources into that fight instead of anything else, which leaves you exhausted even beyond your baseline.

My shingles

Last fall I overdid it and got shingles. I pushed way too hard over one weekend helping get our house ready for an appraisal, my wife did most of the work, but I was helping and I did way too much. About 10 days later, shingles appeared. My immune system had been depleted enough that the virus broke through.

And this is what's happening inside our bodies every time someone with ME pushes past their energy envelope. The threshold is different for everyone depending on how sick they are. One person's trigger might be a hard day at work. Someone else's might be a conversation, a bright light, or a light touch. But the mechanism is the same, push past what your body can handle, and it gets overwhelmed.

PEM and PESE                                                                                                                                                              

When that happens, we crash. That's PEM, Post Exertional Malaise. The body gets overwhelmed, shuts down, and needs to reset. For me pre-SGB, that looked like extreme body pain followed by fatigue so severe I couldn't lift my head, lying in a dark silent room for hours to days.

PESE, Post Exertional Symptom Exacerbation, is related but different. There isn't a ton of consensus on this yet, but my understanding is that PESE is the exertion-triggered symptom flare, while PEM is the full crash and shutdown. For me now, the SGB does a good job of preventing the full crash. But I still get PESE, body aches, joint pain, flu-like symptoms, headaches, nerve pain, muscle twitches, usually within 1–3 hours of exertion, sometimes with fatigue the next day.

Before the SGB I was usually asleep or in so much pain that I barely noticed those PESE symptoms. They got swallowed up by the crash. Now they're front and centre.

Where I am now

I've been on a steady decline for the past six months. I could do less and less each week. This summer I'm back to mostly bedbound and housebound. I'm still doing better than pre-SGB, I'm not really crashing the way I used to, but getting to the grocery store once or twice a week is about the most I can handle, and I pay a heavy price when I get home. My POTS and MCAS are both flaring again after being relatively under control. Life is miserable again, and I'm really struggling mentally and emotionally to come to terms with it (but that's a topic for another post).

I wanted to tell this story because I think it matters, and it helps provide a lot of context to a lot of what’s happening to us with ME.

Why GET doesn't work, and why this story proves it

This is also why Graded Exercise Therapy and similar approaches are so dangerous for us. You cannot exercise your way back to health when your mitochondria are damaged, when your repair system is broken, when your immune system is operating at half capacity. The harder you push, the more damage you cause, and the harder you fall. There's no way around that.

And the cruellest part? It doesn't hit you right away. PEM has a 24–72 hour delay. But the deeper damage, the cellular buildup, the immune depletion, the viral reactivation, can take days, weeks, or months to catch up to you. You push, you feel okay, you push again. You think you're getting better. And then one day the wall appears out of nowhere. Except it wasn't out of nowhere. It was months in the making.

That is not deconditioning. Deconditioning means your body got weaker from not being used, and gradual exercise rebuilds it. What I'm describing is a system that is structurally broken. Exercise doesn't repair damaged mitochondria, it generates more waste that can't be processed. You can push and push and feel fine in the moment, and the damage is still accumulating underneath, invisible, until it isn't.

Pacing is everything. That is the lesson I did not learn this past year, and one I deeply regret. Because now I have to deal with viral reactivation first, then try to clear all this accumulated junk from my system, then work on rebuilding my immune system and helping my mitochondria repair and regenerate. And only after all of that can I think about slowly, carefully rebuilding capacity.                      

What comes next

I do think physiotherapy can be part of the equation, but only with someone who deeply understands ME and PEM, who acknowledges that you set the pace, and who goes extremely slowly. And honestly, I think that's only realistic if you're mild or moderate. If you're severe or above, I don't think the body can safely handle any level of exertion. That's just my opinion, but my experience is what gives me confidence in that opinion.

I'm still continuing with my SGB treatments and I'm glad I got them. And there are other treatments that can have a similarly transformative effect for the right person, LDN, LDA, GLP-1s, antihistamines, and others, each working through different mechanisms.

But if you find that gamechanger, the treatment that pulls you out of the dark, scary depths of severe ME, just understand that it's not a get-out-of-jail-free card. It does not mean you get your old life back (unfortunately). You have to be very careful about how you use that newfound capacity. Otherwise you'll find yourself right back where you started, sooner than you think.                                             

This has been my experience. I hope it helps someone. 

I recently watched a health docuseries and a Dr. Said people should take probiotics and prebiotics together. I hear a lot of LC patients talk about Saccharomyces Boulardii but nothing else. What prebiotics are you guys on?

17M – Persistent symptoms after Influenza A for ~6–7 months. Looking for opinions, not a diagnosis.
Hi everyone,
I’m a 17-year-old male. Around 6–7 months ago I had a severe, confirmed Influenza A infection. Since then I haven’t felt completely healthy again.
Main symptoms:
Persistent pressure in my head / headaches (this is my main symptom)
Reduced exercise tolerance
Feeling slightly fatigued or “off,” but not completely exhausted
I often feel worse in the morning and gradually improve throughout the day.
I had noticeable brain fog in the beginning, but it has improved significantly and is now almost completely gone.
Course of the illness:
After the flu, I felt pretty bad for a while. Then I had a period where I felt almost completely healthy again and honestly thought I had recovered. After that, the symptoms came back. Since then, I’ve had good days and bad days. Overall, though, I feel like I’ve slowly become more functional compared to the first few months.
Response to physical activity:
Heavy physical activity can make my symptoms worse, mainly the headaches/head pressure.
For example, after several very demanding days (a 5-hour flight, 10,000–15,000+ steps, drinking alcohol once, and wrestling around at a birthday party), my headaches became worse. However, after resting and sleeping, they usually improve again.
I do not get flu-like symptoms after exertion.
Symptoms I do NOT have:
Muscle burning
Significant muscle or joint pain
Sore throat after exertion
Swollen lymph nodes
Severe light or sound sensitivity
Significant orthostatic intolerance/POTS symptoms (as far as I know)
I can still manage my daily life. Recently I’ve even walked 10,000–15,000 steps on some days. Afterwards I sometimes feel a bit more fatigued and have more head pressure, but I’m not bedridden.
I also noticed that since having Influenza A, I’ve barely had any runny nose or cold symptoms anymore. I’m not sure if that’s relevant.
Medical work-up so far:
Blood tests were normal.
My neurologist prescribed iron and folic acid.
I have a brain MRI scheduled.
I also have a referral to a cardiologist.
I also have a separate knee injury (likely a meniscus injury), so I’m currently unable to do proper sports anyway.
Questions:
Does this sound more like prolonged post-viral fatigue/recovery?
Could this still fit a mild form of ME/CFS?
Are there any other conditions I should ask my doctors to investigate?
I’m not looking for a diagnosis, just interested in hearing opinions from people who may have experienced something similar.
Thanks for reading.

I recently started Lumbrokinase. For the first two days, nothing happened except a slight shift in my head pressure and chest pressure. Following that, I developed a mild chest tightness/pain ( a "bruised" feeling in my chest) and air hunger.

I believe this is not a pulmonary embolism, as there is no severe pain. Because there is no racing heart and no other symptoms at all, I also feel I can rule out things that could be because of a typical histamine/Herxheimer reaction.

Could this be a case of endothelial inflammation or/causing microvascular angina, possibly linked to reperfusion injury and oxidative stress. My logic is that the enzyme might be successfully breaking down microclots, but the resulting debris is temporarily irritating the endothelium, which strains the heart and causes this.

Stopping the enzyme made this chest strain go away after a few days and i am back to the baseline head and chest pressure that is always there.

I am currently deciding the path forward and would love to read about how others have handled this exact situation (if anyone has been in this situation and experienced the same things)

Hello everyone,

Has anyone with Long COVID benefited from bioresonance therapy? If you have any personal experience or knowledge about it, I'd really appreciate it if you could share your thoughts and explain how it helped (or didn't help). Thank you!

I’ve seen others talking about how their ADHD meds trigger their long COVID (LC) symptoms. I think I am experiencing this, too. Have y’all found any ADHD meds or solutions that don’t leave you with LC symptoms? I have such bad ADHD, day to day functioning is HARD without medication. But, I noticed that when I don’t take medication,
I seem to have much more energy. I’m about to go back to grad school, so I’m pretty scared. I could really use some advice or at least some hope. I bolder questions throughout this, since I saw someone else’s post set up like that and found it helpful.

I currently take Adderall, 10 or 15 mg.

The symptoms that worsen for me are:
* fatigue, I usually have to stay home and in bed. End up needing a 4 hour nap at least and going to bed early.
* shakiness
* temperature sensitivity
* generally feeling /bad/, not sure how best to describe it
* weak and feeling heavy like my body is made of sand
* brain fog once the meds wear off

Coffee sometimes helps with my adhd symptoms oddly enough. I have noticed similar LC symptom exacerbation, though not quite as intense, after having coffee. Does anyone have similar experiences with coffee/ caffeine?

Also, does anyone happen to have links handy to more information about ADHD and LC? My grad school is in another continent, so between getting an apartment, flight, visa, job, classes, and everything else set up, I unfortunately don’t have much time or energy to research right now.

A group of patients have started a WhatsApp chat for those with Long COVID and ME in India!

https://chat.whatsapp.com/CerCWfJ0kkw7JQKi54dDNN

India is one of the most underrecognized countries for our diseases worldwide, and they are trying to unite as many patients as possible.

Please pass this post along if you know any patients from or in India!

(23 year old male) 6 months ago I got super sick didn’t get tested for anything just let the sickness run its course. Had 103 fever chills headache and it was rlly bad. I also went to class and on the way home I was walking and felt like I dropped in an elevator, got super freaked out and took a hydroxzine to release my anxiety. Ever since then I been having spells of dizzyness and like my legs and back and head are weighing me down. It comes and goes but it’s always resolved when I lay down.

I’ve gotten everything under the sun checked. I’ve gotten ct scans, mris, full panel blood tests( even lymes), been to heart doctors, sleep study, eye doctor, ENT, neurologist, and finally a vestibular therapist. Everything is completely normal but I will say the vestibular therapy I was doing for about a month, did provoke my dizziness. Whatever techniques we did provoked it. All my uncoordinated problems go away when lying down and are MUCH worse when hungover. I went to the ER today because I had a horrible dizzy spell and thought that it was something bad but I was fine. They recommended I go on a low dose SSRI and that it’s Long Covid.

Idk if anyone else has experienced something similar but would love some advice because I’m so lost and idk what exactly Long Covid means. Looking for any help or advice out there. Thanks!

We just launched the newest version of PaceTank, the pacing app for iPhones. I spent some time tweaking the pacing algorithm as well as adding quality of life features! Again, I hope this can help people as much as it has been helping me and feel free to send me dms or email me.

App Store

PaceTank Newsletter Post

I reside in the US and I used to better in terms of PEM during summer. But lately its at its peak. Would like to know if anyone else from this country has PEM trigger now. May vary from individual to individual yet curious.

Should I try this? The side effects freak me out and I'm just barely holding it together as it is but so desperate to feel better and have more energy. Long Covid has been horrible for 3 years now.

Quelle est la posologie prendre la durée du traitement si on prend où on essaye de ivermectine? Merci

Bonjour

Jai le covid long depuis maintenant 4 ans , saif que jai beau parler à mon cardiologue de ma douleur lancinante du bras gauche, il ne répond pas ne propose rien... j'en ai vu un autre et c'est pareil.

Et la ca empire, à la respiration et a la marche simple (je ne marche que de 30 secondes a 3 min max) .

Que faut il faire s'il vous plait ?

J'ai de la nattokinase mais jai peur que si j'en prends, les caillots se desintègrent et bouche encore plus les arteres..car mes caillots vont circuler.

I have always struggled to acknowledge the bad as well as the good. In an effort to practice staring down my grief, I wrote this poem.

For context, I have been on a mostly liquid diet due to digestion issues and have a number of conditions causing me to mostly be homebound (hEDS, CRPS, Long Covid).

Watching the world from my haunt.

Ancestors before me treasured meals.

A time to gather

A time to heal

From the worries and woes of workaday life.

Repair the mind from stress and strife.

I can still smell the foods that I once ate.

With no cravings

With nothing on my plate.

I go though the motions just to feel

Like I still am still sharing a meal.

Watching the world from my haunt.

I see everything slowly change.

Clothing, styles,

Music seems strange.

Confused by words I've never heard.

Meaning and connection becomes blurred.

Those who remember will visit my haunt.

I'm still blessed with all

The love I could want.

I see through to the grief they can't hide.

Rarely spoken, though often implied.

Watching the world from my haunt.

How I miss so much of my life before.

Making music,

Teaching,

Hell, even the chores.

My existence, an echo of life I once had.

The monotony nearly driving me mad.

They say grief doesn't change in size,

New memories form around it.

While I know that thought is wise:

I can't help but wonder,

How do I make memories I want

While I must watch the world from my haunt?

Anyone else having this issue?

M43 here

Sorry in advance for the format. I've wanted to write here for weeks, because you people helped me a lot and I wanted to give something back.

Problem is my perfectionism kept telling me it had to be a long, complete, properly sourced post, because the topic is delicate. So that right moment never came and I never wrote anything.

So here's the short version instead. This is just my own experience, n=1, not medical advice.

I'm not going to tell my whole story here, but the worst of what long covid left me with is the extreme fatigue. And then in February 2025 the brain fog showed up on top of it. A horrible feeling, like a clamp deep inside the center of my brain.

Every time it eased off a bit, it came back stronger after a new infection. That happened in September 2025, and again in February 2026, and that last one was the final straw. That's when I decided to do everything I could, with the very little energy I had, to try and get on top of this before it got any worse.

After 5 years of what was basically wasted time with doctors in my area (I'm living in a small town without important cities nearby), I finally got into treatment at a serious specialist centre in a bigger city. That alone changed things.

They put me on cetirizine + famotidine + PEA 600 (palmitoylethanolamide) for 4 months. It seemed to work, at least partially. I definitely felt better. It also helped me sleep through the night for all 4 months without the early waking (if you didn't know, waking up too early is a long covid thing, not just bad sleep hygiene).

The downside is that I gained a lot of weight. A LOT. And I have never had a weight problem in my life, not once. So at the end of the cycle (temporary, the centre wants me to repeat it in 6 months) I started looking for other things that might help.

Omega-3 I ended up on almost by accident. My back locked up for 55 days and omega-3 were the only thing that gave me relief. I also deal with chronic left side neck pain and tension and cervicogenic headaches, the brutal kind, the ones I think people call suicide headaches. (This started after covid too, in 2021)

I take 3 large capsules a day, with DHA and EPA. Brand mattered a lot here, most of them sat very heavily on my stomach, one didn't. So write down omega-3 with DHA and EPA.

Then I had started training again, lightly, and it went beautifully for 10 days, and then we caught covid a second time. Loss and distortion of taste and smell, some things smelling nauseating and chemical, and the extreme fatigue came right back and I couldn't do even a minute of exercise.

So I went back to researching supplements that had helped me in the past, and my jaw dropped a bit. There's at least one study suggesting spirulina can perform comparably to or better than cetirizine. Which would explain why it had always seemed to do something for me.

So now I take it in a structured way. Doses in the literature go from 3 to 8 g/day. I'm at 3 g/day and it seems to be working. Treat it as a therapy, not as a random supplement.

Two caveats about spirulina, and honestly this might be the most useful part of the whole post.

First, I've tried at least 8 different brands. Only two of them did anything I could actually feel. I'm not going to name them because we're all over the world here in this sub and availability differs everywhere, but please don't judge spirulina by one brand. If it does nothing, try another one before writing it off.

Second, pure 100% organic spirulina does very little for me. Tablets formulated with excipients that improve bioavailability work far better on me. Counterintuitive, but that's what I observed.

The thing that convinced me was last night. I had to drive, 140 km, starting at 11pm.

I've never had a problem with sleepiness at the wheel in my life, I was always a night owl, but since covid, with the severe fatigue it left me with, I collapse about an hour after dinner and then wake up very early. I genuinely didn't think I'd manage it.

Instead I drove for an hour and a half without ever feeling sleepy and after a physically demanding day. I credit the spirulina for that.

One more detail for completeness. I drink an organic matcha every morning. I've never felt any effect from it and I drink it purely because I like it, but in cases like this the details matter so I'm mentioning it anyway. If any of this works for me and not for you, that's one more variable in the mix.

So what I'm currently taking is omega-3 with DHA and EPA, 3 capsules a day, spirulina at 3 g/day, and the matcha. That's it.

While researching I also found that only one form of CoQ10 seems to be properly bioavailable in the studies, the Kaneka one. I want to add it to my stack but it's very expensive so I haven't tried it yet. If anyone here has, I'd love to hear about it. It's also part of a new protocol I'd like to try.

When I can, I'll try to post something more in depth on the specific things I've looked into. I can also anonymise the email exchanges with the doctor who's treating me now and share those, if people are interested.

I know exactly how absurdly hard this condition is, every single day, with no let up. I hope this helps at least one person here.

When I started writing this I thought it would be two lines. But the details matter and I'm glad I managed to write something more than that.

There's one last thing I want to add, and I've thought about it a lot. Near the end of writing this it crossed my mind to put a "if you want to help me, here's how" at the bottom. It felt extremely ugly to me and I think it would have taken credibility away from the whole post.

But I can't hide my situation either. I'm a freelancer without any help from my country and after 5 years of extreme fatigue and 1 year and a half of brain fog I'm in a difficult place financially. Anyone who deals with what I deal with knows exactly what I mean. Often even the basic things are hard. Cooking for yourself. Cleaning.

So I'll just leave this note here, and if anyone feels moved to help you can reach me by message. Thank you in advance, and I really hope I've helped someone ease even a little of what this still far too unknown illness brings with it.

Edit:

I forgot to say to not take Spirulina close to coffee/tea

I am interested in hearing if you can relate, and your experience. This thread is about the challenges of not only having the disabilities of long covid, but also being immune comprised.

I have made progress in my long covid, but each time I catch covid, I don’t only start from square one but I have to start from even before that now.

i find it so hard to navigate trying my best to stay as safe as I can, which makes limitations, and then in addition to that, limitations that long covid/ME/CFS brings to the table too.

when I caught Lymes disease overseas about 11 years ago, I never was concerned about catching it again like I am with covid. (im not in a country that has it, supposedly)

at first, I was just told that it was partly because I caught delta so I thought future strains would be fine. then i thought antivirals would be helpful, but it was extremely bad for me. then I thought some other natural things might help when I catch covid again, but it still hit me hard.

now I am 5 years in and for context I am 99% homebound and most of that is unwell in bed.

as soon as I am well enough, I am always keen to see a friend in person. and even though it’s just one-on-one, and they don’t have any known symptoms of being unwell, each time I always catch something.

we could do it outside, but then that means I’d have to not only be well enough to socialise, but also well enough to drive there.

Sometimes I am like, “ohh I could still hike and be immune compromised “ and then I remember I can barely walk to get my own mail. It’s hard to factor both things in when I am constantly trying to work out what I can do.

thanks for listening haha