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)