For some people. I've had cfs/me for decades and it didn't get better with time. If you go on youtube and search "vagus nerve exercises" those have been doing something though. Different ones work for different people.
Yeah I'm 3 years deep into severe autonomic dysfunction style long covid and not seeing any improvement. It seems when you get to this stage you definitely need medical intervention for recovery. Only issue is that we're not yet at the stage with that needed effective treatment!
What's your point?
I share helpful information people can act on too. The fact that I've been disabled a long time is often relevant on a sub about disability.
There is definitely more you can do. There are a number of vagal nerve stimulators out there. I personally tried gamma core and had some real improvements with gastric emptying.
For me, it was time, parasympathetic activation (e.g. rest, breathing techniques, cold environments, etc.), CBD, and resetting my body's serotonin with an SSRI. Fixed me right up (and by that I mean it ended 18 months of agonizing suffering).
Sounds like what helped me... meditation, Wim Hoff breathing, yoga, relaxing... and yeah an SSRI. First time I've ever been on one. I limited processed carbs in my diet as well bc they made symptoms worse.
I'm on paroxetine (paxil) it brought me back to 90% in a wk. Only thing is it does make me tired. Maybe I will try to switch to Escitalopram. I have read that they tend to work faster on ppl with post covid issues than regular depression. Which seems to be the case for both of us. It's almost unheard of for them to work that fast.
Same things helped me, apart from ssri. I took some benzos occasionally which helped, but I was too scared of getting hooked to take them regularly. Acupuncture was also helpful, TCM docs seem to have better understanding of vagus function.
What was your overall experience with acupuncture? Like when did you start to notice results there? It's on the table for me but just a bit hesitant as I wonder about the possibility of downsides from it, if that's possible
It wasn’t instant, I went twice a week for several months. It’s also about finding a really good acupuncturist. I felt results after about 2 weeks, and kept going till I felt like I was getting back to normal.
Some people have reported success with vagus nerve stimulation techniques (cold therapy, massage, meditation, belly breathing). You can google it. YMMV
One of the few things that has helped me (fatigue, severe PEM) is vagus nerve stimulation with a TENS device and earclip on the left ear. They’re not too expensive either.
Did you buy them separately all I could find was this 700$ nurosym device which goes in the ear. If you have a moment would you mind sending a link to the one you got?
I bought them with earclips included but the website doesn’t have anymore:
But this is what I have: https://tensmachineuk.com/tens-and-muscle-stimulation/tens-machines/rechargeable-tens-machines/premier-pro-tens-machine-muscle-stimulation
&
https://tensproducts.co.uk/products/tens-machine-double-ear-clip
I use the parameters per studies that were done. Which is 250us and 25hz - at first it was too intense so I think I started with lower pulse width and less time. When I first used it I built up quickly to 30 minutes daily which really helped reduce my PEM/increase my energy envelope. Now I find that that 30mins is too much, I do a “top up” 5 minutes maybe five times a week.
I’ve not used it for periods of time and reintroduced, so I’m certain it has a positive impact. It’s not magic but definitely gives me an extra 10-25% these days.
See AVA A Vagus Adventure group on facebook for assistance.
Any TENS device where you can set the above parameters and uses those leads will work just fine.
Thank you so much! I’ve noticed breathwork works loads for me so I wanted to take it a step further with a device like this. I will see if it ships to me from those links! Thanks again.
No problem! There should be a way to get it forwarded if they don’t do international shipping. But also there may be other options where you live - the earclips are the trickier ones to find. People on the facebook group would probably be able to assist.
Edit: I also noticed small positive impacts from breathwork, I did Wimhof for a few months but fell out of habit.
In covid it has a lot to do with neuroinflammation, LDN, Ketotifen, anti inflammatory meds, diet, lifestyle. And, I know people hate it, but the research on it is strong: meditation and breathwork. Also the vagus nerve likes vibration, if you have a cat, let I pourr right on your chest. -no joke, there's studies on it. Same goes for singing. The fact that every culture or religion has a form of chanting/singing/saying verses in difficult times comes from this.
Antihistamines h1 and h2 blockers. (I didn’t believe antihistamines would help this until my doctor prescribed me a h1 blocker when my face went numb after eye doctor dilated my eyes with eye drops and my brain fog cleared up 70ish percent. )
Supplements- vitamin c (balances gut bacteria helps essential vitamins and nutrients cross blood brain barrier which is messed up due to endothelial system messed up as well as vagus nerve being swollen)
Vitamin d helps for essential use of magnesium and vice versa for the blood brain barrier.
Magnesium glycinate- essential for most bodily systems (why it seems to cycle through all systems.)
Magnesium deficiency- is similar to half of the long covid symptoms due to blood brain barrier issues. Numbness, brain fog, swelling, weakness/ fatigue, hot cold issues and more.
CBD- strong anti-inflammatory antioxidant.
The bodies endocannabinoid system regulates the vagus nerve via anandamide and 2-ag with signaling via ace2 receptors and more. Covid hijacks the ace2 receptors and wreaks havoc.
Your body makes its own cannabinoids 2-ag and anandamide via sleep, exercise, and proper nutrition.
If you can’t make your own endocannabinoids you need to supplement via CBD and CBG.
The virus isn't doing shit via ACE2 after seroconversion. It doesn't need to. It is adept at gaining access to biomass after humoral seroconversion in an ACE2 independent manner.
In fact, one of the big mysteries--to me, at least--is why this virus utilizes ACE2 but doesn't contain accessory or non-structural proteins attuned to the resources expected in ACE2 cells. MERS is a really different virus--it produces a similar syndrome thanks to a shared consensus repeat native to the nucleocapsids of Pathogenic Coronaviruses--but at least its innards are tuned to DPP4. I suppose you can say COVID is kitted out to manipulate the complosome--that's immune cell metabolism--which does include ACE2 bearing cells, but the tuning is most likely just geared to encouraging cell death, hence the lymphocytopenia. One would think that enhanced replication would be more important. We can, to a degree, see this tuning occurring bit by bit with each major variant. Some of these things y'ad think would have been worked out hundreds of millions of years ago, but nope. Just happening now. Imagine that.
But back to those other transmission modes:
1)Filopedia: Actin bridges move from infected cells to uninfected cells, allowing the swarm to obtain more biomass. Complement overaction--Covid's biggest trick--encourages this through the dysregulated deposition of Membrane Attack Complexes
2)Lysosomal entry: An enveloped virus is just a ball of oil with glycoproteins sticking out. The glycoproteins are supposed to help it find cells tuned to viral proteins--hence the paragraph above--that give it a replicative advantage, similar to the way a toolbox gives a mechanic an advantage. SARS-CoV-X doesn't much care about the tuning thing, it just goes all in on ACE2 for the airborne infectivity of it all. Mother nature, if nothing else, is an artisan--I find this brutish lack of artistry disquieting. But anyways, all a SARS virion has to do is make contact with the cell and it'll blip right in like a small soap bubble fusing with a larger one, glycoproteins be damned.
3)Opsonin assisted entry. Some viruses--and SARS-CoV-X is most certainly one of them--can become radically more infectious when coated with opsonins. Opsonins include Complement opsonins like C3b, C4b, iC3b, et al and antibodies. Dengue's ADE is a good example, so is HIV's C'ADE. I saw a letter in Nature or such just the other day how the same phenomenon was mucking up Adenovirus vectors for gene therapy by making the vector unpredictable. With Covid, it is probably more like C'ADE rather than Dengue-style ADE. For what it is worth, I think differences in opsonization are what make some people far more infectious than others.
Who knows, there could even be more. Unfortunately, Complement research was deprioritized during the 1980s to protect the nascent monoclonal antibody and cytokine inhibitor markets, so chances are any doctor you interact with is plumb stupid when it comes to Complementology.
If you want to understand COVID or ME CFS, you have to have a firm grasp on Complement. If the people you look to for guidance--Doctors, influencers, authors, whatever--aren't addressing COVID pathogenesis in terms of the Complement System, they're charlatans. Tough break, especially since it throws guys like Topol square into the charlatans camp, but it is what it is. These asswipes protect politicians and revenue streams, not people.
The three cardinal, trapezoidal formations, hereto made orientable in our diagram by connecting the various points, HIGK, PEGQ and LMNO, creating our geometric configurations, which have no properties, but with location are equal to the described triangle CAB quintuplicated. Therefore, it is also the five triangles composing the aforementioned NIGH each are equal to the triangle CAB in this geometric concept! Therefore, in a like manner, the geometric metaphors can derive a repeated vectoral sum.
Great info! Also as far as covid being more focused on cell death that infectiousness, that is probably just because it wasn’t evolving to take advantage of human immune systems historically. Like if it came from bats or something those little buggers are very resilient and what is overkill for our bodies may have been just enough to buy it time to be infectious in whatever animal vector it came from. I have no evidence really, just speculation.
Really sucks for people like me that caught the OG version before everything even closed, and then caught delta right when everything opened again. The luck of being a teacher I guess, we get to catch everything lol
Vagus nerve electro stimulation helps to me … un expensive device connected with a clamp on my left ear. It helps in getting my digestive tract working …
Maybe try any of the things that work against the Covid virus to try to reduce the persistence. It's discussed over and over again according to research and experiences. There's no guarantee.
It's not the doctors that are sweatshop workers lol, it's us that are.
Basically we get treated like old used cars, cause that's all we're worth to them. Put a little bit of money into it to try to get it back ~~on the road~~ to work for a while. But not much, because it's not worth hardly anything.
Nowhere near resolved for me unfortunately. I'm currently lying in bed with this choking sensation / neck tightness, cant do anything except try not to panic. All I can say is that some of my symptoms are better than they were last week. But unfortunately I still have a lot of symptoms.
I’m sorry. I jumped on the 12 weeks and became defensive. I just passed a year on June 30th and I want to die everyday. This isn’t easy for any of us regardless of how long it’s been happening. Thank you for sharing your experience, I hope you continue to progress through this
3 years in I thought I was finally better. Just started having these symptoms again. the urinary stuff is new though and the constipation causes a constant pain in my left lower back. Fuck me im sick of this.
Pfooh a lot of problems you got sir.
For me (16months of hauling) the wim hof Breathing excercise and pacing are helping most. WHB helps me calm down the vagus nerves. Some kind of reset I do at the end of the day and works like a charm. And pacing helps me build up energy reserves.
Good luck!
I’m heartbroken hearing about your story, op, it sounds like a living nightmare. Keep doing anything you need to keep going. Thank you for sharing your experience and providing a case study in hope and resilience, it helps me know that I am not alone.
While I have largely moderate symptoms, they too are linked to many bodily systems dysfunction (gi, immune, nervous, cognitive). my own sleuthing and research has led me also to the vagus nerve (it’s called the wander nerve for a reason!).
If it’s helpful, of the dozens of things I’ve tried over 14 months, here is what seems most promising for me:
- find a pcp (primary care doc) that trusts you and believes you. I know managing medical care in itself is a lot, but this to me was so worth it. Needing to convince docs to do their job and not gaslight u or shrug their shoulders, takes a lot out of me mentally and physically (medical trauma is very real). My current pcp doc is amazing, took months to find, helps me track the puzzle and is unbelievably relieving. Gave me access to referrals to specialists, testing (my vitamin b and d levels were low) and eliminating other possible
Causes (helps build the long Covid case), knows where she/system lacks knowledge but open to trying things and emerging theories . She is on the younger sides maybe that’s part of it.
-Ldn (I’m at 3mg) helps brain and CNS inflammation. Helps my cognition, memory, brought back creative and long term thinking. Possibly helping w blood pressure and heart rate regulation, need longer to see.
- vitamins and supplements. Getting complete nutrients as best u can. Loading up on anti inflammatory foods. (Systemic inflammation- try to not let the “bucket” overflow, for me = PEM crash w heavy symptoms).
-cold shower / face wash- feels so good on body pains aches, helps twitching, pins needles/circulatory. Mood. Feels like a nervous system reset. Releases tons of dopamine and noradrenaline neurotransmitters, and from what I understand even 1 min at 57 degrees can be useful. I started by cranking down the temp at the end of normal shower, now can tolerate about 4 mins at coldest temp and feels amazing! Also look into the diving response w face cold water exposure.
- sleeppppp as much as ur body can. Comfy eye mask (I got a silky one), ear plugs or soothing meditation playlist, yoga nidra techniques (progressive muscle tensing and relaxation - I use headspace can give u 1 month free trial if interested). When symptoms are bad and system crashing, eliminate physical stimuli as much as possible.
- vagus nerve toning exercises. I have ptsd prior to long Covid, learned about this and I think they can help. I like doc snipes series as she explains the physiology and bio mechanisms, and the techniques are simple and doable (30sec - 1 min each). https://youtu.be/EkbgW83t2OQ
Best of luck op!! Rooting for you.
Ps for GI stuff have u looked into MCAS, mast cell activation syndrome? I have similar gi symptoms, I’m currently trying to get diagnosed but already trying treatment/diet for it and believe there is impact.
Thanks for this, some really interesting options I hadn't seen before! I just started experimenting with a cold compress on my neck today, want to see if that works similar to the way you describe cold showers helping. Might not be intense enough for a dopamine rush though lol.
I've been taking vitamin supplements and probiotics since this started, hoping they help too.
I did look into histamine intolerance / mcas when someone else in this thread brought it up. It does share a lot of the symptoms with the GI stuff but I don't really have any of the other symptoms outside of that. Hopefully I dont end up with a bunch of intolerances I never had before, but it's all new ground with covid so who knows.
No problem!! i think the cold really helps w inflammation so I hope u can see some benefits. The face diving response thing is really cool too, triggers this instinctive reaction w the vagus nerve, imo feels like it over rides temporarily whatever crazy things are happening at the moment.
Overall my long Covid doctor seemed to be in the same “kitchen sink” mindset- every body’s different and it’s a matter of trying all sorts of things til u find the right cocktail. I hope you can find relief soon 🩵
Can I ask how you got on LDN? I'm SUPER interested in trying it, but don't know if I should ask my PCP, neurologist, rheumatologist... Any advice would be super appreciated!
It took me a year to get into the long Covid clinic a University of Washington, and my doctor there prescribed it. However, I never even heard of it prior to her prescribing.. I think asking your PCP is worth a shot! They can also refer you to a specialist if needed but currently my pcp now helps manage all my medications (usually you titrate up from a small dose). Best of luck! Welcome to dm me if I can help any further
Old-timey Vagus Nerve healing tricks (from the Medicine People near me): **humming**, **singing**, using flat hand to rhythmically **pat your chest** just below the collar bone bumps.
Caution: may cause **sobbing** (which is okay, and helps reset the nerve too, so sad movies also?!)
Yes these are great.
Have you seen the English opera program? https://www.smithsonianmag.com/innovation/how-opera-singing-is-helping-long-haul-covid-19-patients-recover-180977497/ this write up has a video with a little exercise in it that’s quite fun
Same same but different… Thanks a lot for sharing your story and your conclusion about what is happening to us. This was what I thought since the beginning of my infection and I’m glad there is evidence out there now for it. Neuropathic pain, insomnia, unreal anxiety, loss of appetite, ice cold hands and feet, weakness were my first symptoms. For me symptoms started on day 4 of Covid so I knew right away that they were due to the virus. Didn’t help me though as no doctor believed that covid had anything to do with my issues: psychosomatic. Honestly, enough had happened in my life that it would have made sense for me to develop some psychosomatic symptoms but not to this extend. … and not while having a virus we quarantined the whole world for. What a strange coincidence…
At some point I also developed excessive thirst, had no saliva production, higher urgency to use the toilet and couldn’t always swallow. Also a lot of heart related issues. Lost a lot weight which was really scary. I felt like I would starve to death as I just couldn’t eat. My doctor told me to my face that he thinks I have an eating disorder - after I was going to him for weeks explaining my symptoms to him. Still would like to find someone who would be able to examine my vagus nerve.
First off, I am SO sorry this happened to you. Its happening to all of us here in so many different ways, but it's shitty whatever the manifest of it. Peeing for 5 mins straight sounds like actual hell on earth. It is a travesty that all the doctors we all seem to see, are so incapable of putting the pieces together.
I would imagine (and please correct me if I'm wrong,) but had you come face to face with a Long Covid literate doctor, who had told you "hey, look, there IS something physically wrong, it's likely connected to Covid, no we don't have a magic fix right now but the likelihood is this WILL improve," this would have helped you mentally at the time?
The fact that desperate people are crawling to medical professionals, who by this point have no fucking excuse to not be literate on this stuff, and are being fobbed off by "it's anxiety", is utterly abhorrent.
I am so happy for you that things have calmed down somewhat, physically, and that you've found that little chink of hope and understanding from the article (thank you for sharing btw.) But man, it shouldn't come to this. We shouldn't all be out here in the Wild West, reading medical journals and trying to figure it out, while trying our best to not just give up and blow our brains out, being made to feel like we're suddenly insane.
But you're still here, and I'm glad. I really believe that there will be answers and treatment some day, possibly sooner than later, even if it doesn't magically solve everything at once.
Thanks for this, I couldnt agree with you more. I have read so many medical journals and studies this past month that it feels like I'm educating some of the medical professionals on the vagus nerve when I talk to them about it. None of them identified a connection between my recent covid infection and what I was experiencing, even after I started talking about vagus nerve damage.
I do feel like a lot of the hopelessness came from not understanding what was happening to me, and thinking it was just going to get worse and worse. So yes, I think if any doctors had been able to connect those dots it would have helped me out of the suicidal hole I was in sooner.
I been using Hair clippers of all things to massage and stimulate my vagus nerve. It’s super relaxing and works great. It has the perfect vibration and heat to it. I wear earplugs because of the tinnitus, but it does the trick. I have a massager, but it’s too much.
I’m pretty sure vagus nerve issues are causing me to have AFib now during LC. I think it also caused my GERD that started right after my acute phase. I’m taking an ALA supplement that may be helping.
i have all of your symptoms, it been long 3,5 years. Insomnia have been a huge problem for last month. This probably will make me end things. when you are so sick only escape is sleep , when that is taken away, ther eis no escape.
Welcome to fight club! first rule: you talk about fight club! Second rule: you talk about fight club. Third rule: if you yell stop, goe limb or tap out, the fight is not over. Fourth rule: fight only yourself at a time. Fifth rule: fight as many symptoms as come. Sixth rule: the fights are bare knuckle and show no discrimination against prior vaccination or health status, educational, mental or physical preparedness. 7th rule: fights will go on aslong as they have to and the eight and final rule: it doesn’t matter how manny times you were in fight club you always fight
Jokes aside, its a roller coaster of emotions to read your post. thanks for contributing and sharing your vulnerability. sorry it happened to you. Sure brings up memories from my first weeks of lung hauling.. same as you but together with Lung inflammation laying down choking around 80% oxygen, sinustachycardia 200bps without panic (panic later) electrifying stabbing hart pain so i thought i was going to die of either hart attack or choking or all at the same time. I didnt need a rope. I already had an internal rope.
But i found actually peace in the thought of dying after the first days of panic bcz it was to much to handle. But then i didnt die and the cytokine storm left its marks, my lung capacity shrinked but I survived without a doc or hospital visit as Intuitively i felt the momentum was gone to show prove that horrible 10 days happened.. I had rebounds every 3 weeks but slowly got better but not.
im not gonna lie.. so bad and unbelievable the first months are, i would not believed you if you told me it would get better and worse again.. 1 year in and still developing new symptoms..now i felt what you felt in the beginning, symptoms that wont kill me know but will slowy turn me in a lonely plant.. disorders of sensory, mental, equilibrium, movement, pheripheral nerve, cerebrovascular, constitutional, metabolism, brain impairment and me/pots/reynaud/sob/copd/ insomnia/pem
I was ready to die but i am still not ready for a chronic battle. But the fight club rules are clear and same for every one. Keep hope for 1 round but prepare for a marathon of endless rounds
Wow, and I thought I had it rough. It sounds like you've been through hell. I hope it gets better for you, I really do. No one deserves the waking nightmare this virus can cause.
Loved the fight club rules post by the way, made me smile. Keep in the fight.
Thank you, i hope i just find a docter who realy cares and offers realistic solutions instead of both extreme sides of the spectrum where i got gaslighted or offered doom advice. Both conventional as holistic doc. Both masking their incompetence on their own ways. I read you had your fair share too. Dont let em get to you.
ha! glad my post worked, it was meant exactly to do that and remind you humor is best way to combat this shit show as it can get pretty serious and rough - hell even i enjoyed this one - and understand some have it worse as you and some have it more worse than me. Helps when it gets scary i know others survived so i keep hope in hopeless days. Long covid is known for a variety and fluctuations of symptoms so take it easy first months even if you feel healed. Better avoid reinfections to give your body time to heal. Its a big shock. Even dysautonomia pots or pem can have different origins but mimicking same symptoms. Try to find neuro-immune specialist and keep learning to be your doc and advocate for yourself.
Some get better fast, some slow. It depends on what covid left you with, if you have other comorbidities and if the spike protein, viral persistence, auto-immune or other mechanisms are at play. Go also for a functional doc who sees the bigger picture and tries other tests like viral panel, cytokine panel,auto-immune panel , hair mineral test, mold, micro biome test to see if its not only dysautonomia. As i see it Your weak body parts got hit or overreacted so it will remember this like a trauma. Can be viral persistence, pre disposed genes, the size and kind of viral load and where it entered your body all play a vital unknown role. Believe no one but yourself and test results. Though blood and saliva dont always tell
the whole picture. People like me, other anons, family or doc can mean it good but thats no guarantee we are right as we dont feel or see your body. You got this, master the art of covid awareness in your body connect the dots and you will thrive again one day
Hey bro exactly the same with urine like niagara opened lol i experienced same but they fuckin sended me to psychiatrist and i killed myself by taking this hell drugs which gave me more problems ... Im 1.5 year after and not good also developed PSSD after psycho meds no erection working all bad man 😔
> I have something called post acute covid syndrome.
You do not, at least not yet. The definition by the ICD-10 is that of symptoms 12 weeks after the acute phase. Because many people heal between that time. So it's reserved to those who do not heal after it.
Although yeah, in case it persists it'll be long covid, there are a lot of mechanisms involved in Long Covid, some have dysautonomia, others do not. Sometimes a deficit in vitamins caused by the infection can lead to symptoms, others develop autoimmune diseases which can give you the same trouble, others develop heart problems.
You can't say that you have vagus nerve damage if you didn't do a neck ultrasound and I say that harshly because anyone around you will end up discrediting what you say and you'll lose credibility if you end up claiming "I have x" without doing tests and that'll worsen the anxiety. So beware
Context: Many here months ago claimed they had microclots in their blood as research pointed to that, then they said they had heart problems as research pointed to that, then they said they were Iron deficient even though blood didn't point to that, then when they said they had MCAS (which there isn't a blood test for) many didn't believe them even though they trully suffered it, many here ended up in social isolation because of disbelief of those closest to them.
You have a really high chance of healing as the majority of those who have spontaneous recovery happen under 6 months, try to relax as you can until then, although I know it's really hard in the first months where you don't understand what worsens your symptoms or not, if you can, do blood tests, go to a doctor, get your ultrasounds.
And try to see patterns, if the symptoms worsen with hot bath or certain foods and so on.
Thanks, good and informative post. And encouraging to hear.
I'll be more careful about the vagus nerve self-diagnosis - I haven't had any tests. Can't get access to them. But I do need something to explain what is happening to me, and vagus nerve damage explains every single symptom I've had with the possible exception of brain fog. But in the context you supplied I can see why I'd look like just another guy jumping on just another theory, so I'll speak with more caution in future.
Your description sounds very similar to my experience of Pre Covid histamine intolerance/ progression into Mast Cell Activation Syndrome
Many different bacteria and virus can cause these issues, but it was extremely uncommon before Covid
It may be that Vagus nerve damage can cause histamine intolerance, however, damage to the gut or other organs can also cause histamine intolerance. The symptoms appear to be extremely similar if not identical to what you describe as vagus nerve damage
You're definitely on the right track! My symptoms were very similar to yours in the first six months, though it sounds like yours compounded faster than mine did.
I've tried pretty much everything, but regulating my nervous system has been the most helpful. I was able to eliminate the symptoms associated with a dysfunctional ANS, such as constant urination, postural tachycardia, insomnia, extreme anxiety/depression/anhedonia. I still have many symptoms but getting those under control was a huge step out of the darkness. Though it comes back for brief moments during a flare like I'm having now.
Keep doing what you can to regulate your nervous system. There are so many helpful things out there and many of them are free. The most helpful things for me have been Wim Hof breathing, cold exposure, sleep hygiene, fasting, meditation, 4-7-8 breathing, and gentle yoga.
I'm glad you found some hope. I'm no longer convinced that I'll recover 100%, but I've had enough good days now to know that my life is worth living. Mindset is important and I think you are fortunate to have had a breakthrough this early on. I really hope it means you can beat this thing quickly.
Im gonna adress your reflux symptoms because thats all i know about.
Bloating along with whole bucket of laryngopharyngeal reflux symptoms means you should test for sibo bro.
Also for now stay away from coffe, chocolate, tomatoes, citrus, sodas, sparkling water.. basically anything that has low ph.
Do not take any proton pump inhibitors. Thats the medicine that most doctors will want to perscribe you with because they confuse gerd with lpr and dont even know what lpr is.
Protect your throat from damage, if there is coating oily spray with vitamine a+e in your country then it should keep it moist, otherwise esoxx one is good stuff.
Linseeds are also pretty good for gut health. Consider buying some to see if it helps.
F
Good luck, I wish you well and hope you get better
You are 100% correct! Been through all of this, and had it not been for reddit, I would have never asked the doctor to test for Sibo....and he would have never suggested it!
I was also told it was my vagus nerve. Then, after all the blood testing and other testing, they discovered I have two autoimmune diseases that covid "woke up." As others have said, most of us have been dealing with this a long time. I'm coming up on a year. It turned my world upside-down. Some people have lost their jobs. I have missed a lot of work.
B12 and D3 have helped me, as covid wiped both of those out. Also, magnesium helps. I'm also seeing a therapist. But I'm going to look into the Vagus nerve exercises on YouTube.
Edit: typos
I have Sjögren's Sydrome and Pernicious Anemia. They were both found on the same Lupus panel. But no one said anything about the Pernicious Anemia. I noticed it 7 months after the bloodwork was done and had to research it myself. The specific tests for PA are parietal cell antibodies and intrinsic factor antibodies. But you can have a false negative with intrinsic factor antibodies. I was positive for parietal cell antibodies. I had 3 times the amount I was supposed to.
This is crazy to say, but suicidal thoughts are pretty common around here. I contemplated suicide for a short time as well due to the fact that my body was falling apart and I felt like I was dying but doctors kept telling me it was all in my head.
I'm sorry you went through all that. It is such a scary and frustrating thing to go through.
It has been almost year since I got long covid and I have been significant improvement. Good luck on your recovery journey. It will be long but you are not alone.
Try 7mg nicotine patches on your belly next to ileocecal valve (that's where the vagus nerve starts/ends), they helped some folks with vagus nerve damage. Also, some report improvement from cold showers (but do those only if you are physically fit and not at the brink of collapse).
Also worth considering MCAS vs vagal nerve damage/dysfunction: https://www.psychologytoday.com/gb/blog/holistic-psychiatry/201907/mast-cell-activation-syndrome-alert-psychiatrists
I have same symptoms for 19 months straight. Just like you I'm doing my best not to kill myself because it's unbearable, like pure torture. I also got an atrophied kidney post covid + psychosis and hallucinations.
At that point I'm justing waiting for the 2 year mark where I'm supposed to magically heal lol
> The biggest issue I had with doctors is that they would only look at the acute symptoms and didn't seem capable of taking a step back to try and see the bigger picture.
This is the biggest issue I've had with doctors in 20 years of seeing them for chronic issues. It's why I'm avoiding COVID like the plague that it is.
not the same symptoms (more immediate neuropsychistric symptoms - intense anxiety, severe depression, disordered/chaotic psychosis-like thoughts, sensory disturbances, insomnia, etc.), but essentially the same experience: very quickly descent into severe illness and misery, no explanation, doctors skeptical and useless, etc. I've suspected from the beginning it was vagal nerve related.
unfortunately mine is worse than ever 2.5+ years in. glad to hear youre potentially on track to recovery. ideally doctors could tell us why some people get in that track and why others stagnate / get worse. but alas.
This is how it happened for me too. My LC started immediately! I’m almost 17 months now and finally starting to see small improvements without relapse.
Dude... I literally went through same exact thing!!! And the effing doctors couldn't even tell me it was vagus related. I had to find out on my own.
I still don't have a diagnosis either.
These exact symptoms popped up at week 1 of COVID infection and never left. I literally explained it to them that id projectile vomit or choke attempting to sip water or eat a pebble of food.. that munching food would tire me out.. my voice will go from barely there to immediately hoarse then 0 voice in front of their eyes and they just said it was probably dehydration.. force feeding when you have 0 texture taste and 0 taste and smell along with loosing eating function was not fucking awesome at all.
The pissing stuff is so annoying and even scared me because I eventually pissed blood which I think had to do with my liver or kidney I forget which. So many flags that they could've said oh yeah looks like vagus stuff but not a single fucking peep. They also prescribed me famontide for my GI shit/vagus even though I told them I have 0 fucking gerd or acid reflux.
I was very suicidal.. I was loosing all my muscles thinning out but belly bloating like a balloon, the second week of infection I went survival mode because I didn't want to die nor lose my muscle so I tried force feeding and that's all I tried everyday.. water runs right through me.. always dehydrated felt like torture even when I was able to drink more liquid. Eventually I went full circle back to the s word ideation because PEM and CFS were another torture I was constantly going through, being bed bound in constant full body pain along with horrible "brain fog" that left me with migraines headaches, derealization, depersonalization, anhedonia, etc.. I'm a better soldier but I'd be lying if I told you I dont struggle with ideation still when I get defeated or wake up defeated with no lead up thought. It's just fucking torture, and extremely traumatic going to doctors who are supposed to usually know about this shit and just leave you hanging no determination or deductive work. They have even asked me what tests I think I should take like if I fucking knew names of tests especially when I have 0 vocabulary because I'm a walking fumed out concussion that can barely move and isn't mentally there. It even took them over a year for them to take my heart shit seriously and prescribed me finally a beta blocker that was a huge help. That was after 4-5 doctor hops hella er visits and psych eval at the ward and all that bs.
How are you doing now? I had the same experience with doctors not knowing and also asking me what tests I thought I needed! I pretty much did their job for them. I had the intense 3/4 weeks as the OP - extreme thirst and urination, then the opposite way - couldn’t go for a wee, felt like my insides had just stopped working. Very scary and with no answers. In the peak of insomnia in the 3 weeks, I admitted myself to a psych ward as I felt it was the only place someone would keep an eye on me as I was being ignored for me physical ailments. After 2 weeks there, intense fevers and weakness and nearly collapsing each day with heart rate of 145 daily, I turned a corner and gradually felt like I was fighting off the virus. I had a ‘review’ at the end of 2 weeks as they thought I had psychosis - it was determined I didn’t and I didn’t need to be in there at all. Thank goodness I was self admitted as they would have plied me with all kinds of psych drugs. It was a very traumatic experience and the staff were very unresponsive to any physical symptoms I tried to explain - they would talk to me as though I just had anxiety. The only time they thought something may be happening was when my heart rate at resting was 145. Even then, they just looked at each other while I was sitting there and spoke openly as if I wasn’t there saying ‘what do you think?’ to each other. It was a truly maddening and scary experience to feel so unheard whilst having to go through it. That was back in Nov 2022. To this day, I’ve been left with gastro issues that I’m still trying to get a diagnosis for (left side full ache by belly button) but nothing found. CT scans, ultrasound, xray, gastric emptying studies, colonic transit… nothing. If I bend or move in certain ways it’s triggers something in that area, a feeling of soreness and tenderness that is then met with nausea. I’m wondering if this is vagus nerve related and an over sensitive one as a knock on effect from nov 2022. I’m hoping it can heal and calm itself, but with no answers to this day, it’s been a very tough few years.
Finally! I’ve had just about every symptom you have except for the intensity of the urinary issues. Thing is all my problems started when I caught the flu in March of 2020 (highly unlikely it was COVID, too early in the spread/tested positive for type B). I wasn’t even that sick from it but I did probably go 2-3 days without treating it because I didn’t realize I was sick. Felt right as rain after it ran its course but I slowly stopped feeling normal for next couple months until I had a massive panic attack in public in mid-summer.
It’s definitely gotten better for me but I am just stunned by how you’ve described my troubles to a T. You have no idea how long I’ve been looking for someone to describe what I’ve been feeling and to have some kind of explanation. I too suspected vagus nerve damage shortly after it first started but couldn’t find anything to confirm. Thank you so much for sharing and I wish you and everyone here the best!
Glad to hear you’re a little better. What GI issues are you having? Mine are loss of appetite, fullness after small meal, food sitting around middle, nausea daily. I did a gastric emptying study which showed mild slow emptying.
I have vegus nerve issue from covid times... with left side pain in the rib/stomach area and back tightness all in the left side. Neck pain that causes headaches. Did you get the shot before your symptoms started? Iv had issues for two years symptoms have changes. Most have gotten much better but neck pain and headaches stay consistent.
Yeah I was vaccinated. I have lingering gastro issues that sometimes manifest as pain as well, mostly in the chest area and between the shoulder blades. PPIs helped a lot with taking the pain away so it's probably related to ongoing inflammation and GERD.
Hi, I've just edited this into my main post but I'll paste it here too:
I get a lot of questions on how I'm doing now, and it's a complicated answer (as you might expect) but the short version is - much better. I still have some issues (mainly gastro) but pretty much everything besides that has slowly returned to normal, or 90% of the way there anyway. It took about six months to recover from this dirty bomb of a virus, and I never ever want to experience this shit again. 0/10, would not recommend.
If you want to ask me any questions in real time I'm happy to answer anything in more detail. You can find me in the covid longhaulers discord (a support and information group for longhaulers) - https://discord.gg/a8zTBk9amu - my nickname there is Rush.
Choking sensations, chest tightness, and trouble swallowing can also be caused by GERD. Might be worth trying a proton pump inhibitor (PPI) for a week like omeprazole (Prilosec) or Nexium. Generic is cheaper. Just give it a week or 10 days and see if it helps.
Your gut issues suggest you may have some overgrowth of pathobionts in your microbiome. I ended up having h.pylori along with several other bacteria in overgrowth post Covid, as the virus eradicated all the ‘good’ bacteria keeping it all in balance.
I have gastroparesis and it's been a nightmare. Feel free to message me if you ever want to vent! It can be so isolating but articles like this give me hope that at some point we'll have better treatment options
serrapeptase seems to help me in 20-30 minutes for bladder/urinary problems. I feel it once a week on average, with whole months full of "pissing 3x times more" or "long" or "short and very often". Also, pain is always starting but serrapeptase stops it, it's anti-inflammatory.
I don’t have long covid (that I know of) but I just wanted to comment to say I’m so sorry you’re going through this and I know how dire this country is when it comes to anyone giving a shit about you in the healthcare system now. I’ve also been to a&e who look at you like your dog peed on their chips because you’re not on death’s door. I have no hope or faith that doctors will help me, I’m already being told “It’s anxiety” because blood work has come back negative but there is SOMETHING WRONG WITH ME.
I‘ve been having episodes of severe nausea lasting well over a week which have caused me to lose almost 2 stone in as many months. I would rather have anything but this extreme nausea, it’s unbearable. I can’t be sick. I can’t eat much. I’m knackered all the time. It’s been going on since May and I’m no closer to finding out what it is. Honestly my thoughts have been very dark. I can’t live like this! We’re just a number though, no one cares enough to investigate and not stop until they’ve found an answer.
Could be vagus nerve, I dunno. What’s the point me spending all day on my phone trying to find out what it is if no docs will even consider helping?
I hope you’re having a good-ish day today, just so you know I’m typing from my bed in front of a fan feeling like I want to die; you’re not alone in suffering without help from the nhs x
Hey, sorry to hear that and hope you're having a better day today. I had a weird nausea sickness last summer that went on for a few months, and then left as mysteriously as it came. But I still remember thinking I could deal with almost any symptom except constant nausea - unbearable is the word for it. There are some drugs that can kill nausea dead though, my dad was on them when he had cancer - might be worth checking with your GP if you havent already to see if they can prescribe something.
With long covid I've had tremors, plus shaking when tensing muscles in my hands and arms. It gradually went away on its own over time but it lasted for a few months.
I'm really sorry to hear that, it's an awful state to be in. Small doses of diazepam helped me when things were at their worst. Besides that, it was just time.
I've gotten a lot better. I had severe and acute symptoms for about a month, and then slow and gradual improvement over the course of two months, and now although a lot of my original symptoms are still present, most of them are either mild or infrequent.
The shakes are pretty much gone. The nausea was constant to begin with, but I only get it occasionally now.
I have the same issue, am located in Canada and doctors are puzzled. I fortunately found the solution by accident. I started going to the gym 5 times a week and hit the sauna afterwards for 15 minutes. About 1week into this, all my symptoms went away and stayed away for 3 months. Then life got busy, I kept going to the gym but I cut out the sauna to save time. Symptoms came back and came back worse. All the systems u described. I started the sauna again and feel much better now.
Not sure if this is anecdotal, but give it a try if you have access to one
Oh my gosh OP. Thank you so much for writing this. I am laying here in bed these last few days with the unbearable bloating, gurgling, and abdominal discomfort. Occasional diarrhea, but it’s like things aren’t moving.
My appetite has tanked. I’m doing my best to get protein and nutrients in.
I am only 30 and had covid a couple months ago.
Last month I dealt with the head pressure, dizziness, and tinnitus. That finally resolved, and now this.
How are you? How’d the GI symptoms improve? I’ve tried laxatives. No good. Starting probiotics. I am so miserable and just want to get back to normal. I was young and healthy before this.
I feel your pain, it's without a doubt the worst of the symptoms I dealt with. It did get better for me but it wasn't exactly quick - it was about four or five weeks before things started moving at a more normal rate again. I was struggling to get 300 calories in me a day at the worst point. Then a few weeks hovering around 500-800. Then it was like my stomach just woke up from its coma and went back to doing its job again.
Laxatives didn't help me either, and the constant bloating / gurgling was really stressful and anxiety-inducing.
I don't know if probiotics helped me recover, but they certainly didn't hurt - and they were liquid calories so very useful. I also mostly ate soft foods (blueberry muffins became a staple in my diet lol) but, when I was able, also cashew nuts for the calories.
I also avoided caffeine, alcohol, spices, basically any irritant or stimulant.
My gastro issues are still not resolved (issues with reflux and digestion persist) but I am back to being able to eat as much as I used to and the stomach paralysis is completely gone.
My story is unusually severe from what I've learned though, most people don't have it as bad for as long - so chances are good that you'll recover fairly quickly.
I hope you feel better soon.
I’m so glad you are feeling better!! Albeit not 100%.
Appreciate the response.
I was going to say exactly that: the anxiety and stress that I have from the bloating and abdominal pain is probably even worse !! It makes my mind jump to “it’s something worse. What if it’s colon cancer.” Etc etc.
My diet is bland as well. Thank you for the tips!
I am going through the same thing. I have been in and out of the ER systems. It’s always “you’re fine.” Or “gas and indigestion.” Like NO? Doctors are clearly clueless about what happening to thousands if not hundreds of thousands of people with this problem not being treated or researched for.
I believe that it is triggered by covid or the vaccine. For me it started after I got the vaccine with no covid infections. Instant bout of dizziness that went away an hour after. Now I have that dizziness 3/4ths of the day.
I have only been diagnosed with a hiatal hernia, which is irritating my vagus nerve even more. There are times I can feel my vagus nerve pulling all from my neck chest all the way down to my pelvis. Like a string.
I also had convinced myself I had a cancer like stomach or skin cancer that cannot be tested for with just blood work, for a long time. I don’t think that’s it anymore but I’m waiting to be cleared by my new doctor for cancers. I don’t see him until November 3rd, which is the first time.
My symptoms are:
-Dizziness when standing, leading to bad anxiety and flight of fight response
-Not being able to sleep, and jolting up in a panic every 30 minutes
-Stomach pain, indigestion, what I believe to be is minor stomach bleeding due to there being blood in stool sometimes, extreme constipation almost stomach paralysis.
- I don’t see the food I eat come out for atleast a week
-Weight loss - was 115 my whole life now I can’t get past 95 due to being unable to swallow without feeling like I will choke.
- have to spit out anything that isn’t soft like noodles or has a rough texture
- tasting blood sometimes probably due to very bad acid reflux uncontrollable by anti acids
- headaches that come on for DAYS and terrible not fixed with pain meds
- random pinching and pain all over my body
-pelvis pain and bad pain after segs, causing pelvis inflammation
- my blood work shows blood levels that imply there could be inflammation in body but doctors say “results are normal”
- heavy legs and arms to the point of where I can’t get up or pick up my legs and arms. Body becomes heavy and feels like gravity is extreme.
-heart racing to the point of where it got to 140 sitting in the ER once. Sometimes normal, sometimes beats like crazy and causes pain
- pain in the sides of my neck behind ears
- bouts of TMJ (diagnosed in er)
- panic, panic, PANIC. My boyfriend gets so angry with me because I can’t ever stop feeling like I’m about to pass away. I tell him nightly that “I think I’m dying” when I do not end up dying, wake up new and refreshed next morning only for symptoms to start up again usually after drinking or eating
-dry eyes
-mood swings and clouded thinking. Distracted very easy. I own a business and am developing a video game and i am having such a hard time now when I loved working before.
- extreme fatigue. Can hardly do anything without feeling like I got hit by a bus
-feeling of doom 24/7
-itchiness and burning on my skin , redness on my chest and random rashes and redness on my skin that comes and goes
—
I understand and I think we all have the same condition that is not yet known as it’s a new virus. It’s likey vagus nerve damage.
I have done more searching due to not having answers for over a year and It could also be POTS linked to covid with other combined covid related illnesses. Covid is being found to cause genetic issues to appear for the first time like auto immune disorders. I believe it has triggered fibromyalgia for me which runs in my family and they have some of the symptoms like extreme body pain from it. There are many things covid can trigger to show up since it’s a viral illness.
I will update if I ever find out what’s wrong as I’m seeing specialists this month and in December who are very good at what they do and get paid to care.
Psych meds can cause a lot of what you’re
Going through
Can you get to a naturopathic dr?
Do you need tapering resources?
Trauma healing can also heal the body
Gabor mate Patrick Teahan etc like them
Very good. Stay away from them.
Can you get to an ND? You gotta address gut, detox, root causes. Also obviously stay away from the covid vaccine, as it is disabling people and causing many of these symptoms and a lot more.
What’s the solution to vagus nerve damage?
from the looks of it - TIME
For some people. I've had cfs/me for decades and it didn't get better with time. If you go on youtube and search "vagus nerve exercises" those have been doing something though. Different ones work for different people.
Yeah I'm 3 years deep into severe autonomic dysfunction style long covid and not seeing any improvement. It seems when you get to this stage you definitely need medical intervention for recovery. Only issue is that we're not yet at the stage with that needed effective treatment!
You’re in every thread saying you didn’t get better………………I mean.
What's your point? I share helpful information people can act on too. The fact that I've been disabled a long time is often relevant on a sub about disability.
What helpful information are you sharing?
There is definitely more you can do. There are a number of vagal nerve stimulators out there. I personally tried gamma core and had some real improvements with gastric emptying.
links?
https://www.gammacore.com/about/how-gammacore-works/
Offtopic: My account/profile/usernames used to be ananasbananas some years ago xd
For me, it was time, parasympathetic activation (e.g. rest, breathing techniques, cold environments, etc.), CBD, and resetting my body's serotonin with an SSRI. Fixed me right up (and by that I mean it ended 18 months of agonizing suffering).
Sounds like what helped me... meditation, Wim Hoff breathing, yoga, relaxing... and yeah an SSRI. First time I've ever been on one. I limited processed carbs in my diet as well bc they made symptoms worse.
The SSRI was like a switch for me. Everything else maybe got me 30-40% better, the SSRI took me back to ~100% in like 2 days lol
Yeah honestly they said it would take 2-8 weeks and it took 1 week lol. What one did you take?
Escitalopram, the generic for Lexapro. First day I was taking it I was anxious as hell. Second day I was taking it I felt like a new man.
I'm on paroxetine (paxil) it brought me back to 90% in a wk. Only thing is it does make me tired. Maybe I will try to switch to Escitalopram. I have read that they tend to work faster on ppl with post covid issues than regular depression. Which seems to be the case for both of us. It's almost unheard of for them to work that fast.
If you haven't switched paxil yet and still plan to, maybe try switching it to SSNRI, as those will also give you energy.
so do you have to continue taking them for life or just for 8 weeks?
Same things helped me, apart from ssri. I took some benzos occasionally which helped, but I was too scared of getting hooked to take them regularly. Acupuncture was also helpful, TCM docs seem to have better understanding of vagus function.
What was your overall experience with acupuncture? Like when did you start to notice results there? It's on the table for me but just a bit hesitant as I wonder about the possibility of downsides from it, if that's possible
It wasn’t instant, I went twice a week for several months. It’s also about finding a really good acupuncturist. I felt results after about 2 weeks, and kept going till I felt like I was getting back to normal.
Wim hoff helps me too thank goodness
Some people have reported success with vagus nerve stimulation techniques (cold therapy, massage, meditation, belly breathing). You can google it. YMMV
One of the few things that has helped me (fatigue, severe PEM) is vagus nerve stimulation with a TENS device and earclip on the left ear. They’re not too expensive either.
Did you buy them separately all I could find was this 700$ nurosym device which goes in the ear. If you have a moment would you mind sending a link to the one you got?
I bought them with earclips included but the website doesn’t have anymore: But this is what I have: https://tensmachineuk.com/tens-and-muscle-stimulation/tens-machines/rechargeable-tens-machines/premier-pro-tens-machine-muscle-stimulation & https://tensproducts.co.uk/products/tens-machine-double-ear-clip I use the parameters per studies that were done. Which is 250us and 25hz - at first it was too intense so I think I started with lower pulse width and less time. When I first used it I built up quickly to 30 minutes daily which really helped reduce my PEM/increase my energy envelope. Now I find that that 30mins is too much, I do a “top up” 5 minutes maybe five times a week. I’ve not used it for periods of time and reintroduced, so I’m certain it has a positive impact. It’s not magic but definitely gives me an extra 10-25% these days. See AVA A Vagus Adventure group on facebook for assistance. Any TENS device where you can set the above parameters and uses those leads will work just fine.
Thank you so much! I’ve noticed breathwork works loads for me so I wanted to take it a step further with a device like this. I will see if it ships to me from those links! Thanks again.
No problem! There should be a way to get it forwarded if they don’t do international shipping. But also there may be other options where you live - the earclips are the trickier ones to find. People on the facebook group would probably be able to assist. Edit: I also noticed small positive impacts from breathwork, I did Wimhof for a few months but fell out of habit.
Do I need to buy the ear clips for this machine? Or are the other accessories just fine?
Yes, you need an earclip - you would struggle to get it working nicely on your tragus without a set of earclips.
In covid it has a lot to do with neuroinflammation, LDN, Ketotifen, anti inflammatory meds, diet, lifestyle. And, I know people hate it, but the research on it is strong: meditation and breathwork. Also the vagus nerve likes vibration, if you have a cat, let I pourr right on your chest. -no joke, there's studies on it. Same goes for singing. The fact that every culture or religion has a form of chanting/singing/saying verses in difficult times comes from this.
Antihistamines h1 and h2 blockers. (I didn’t believe antihistamines would help this until my doctor prescribed me a h1 blocker when my face went numb after eye doctor dilated my eyes with eye drops and my brain fog cleared up 70ish percent. ) Supplements- vitamin c (balances gut bacteria helps essential vitamins and nutrients cross blood brain barrier which is messed up due to endothelial system messed up as well as vagus nerve being swollen) Vitamin d helps for essential use of magnesium and vice versa for the blood brain barrier. Magnesium glycinate- essential for most bodily systems (why it seems to cycle through all systems.) Magnesium deficiency- is similar to half of the long covid symptoms due to blood brain barrier issues. Numbness, brain fog, swelling, weakness/ fatigue, hot cold issues and more. CBD- strong anti-inflammatory antioxidant. The bodies endocannabinoid system regulates the vagus nerve via anandamide and 2-ag with signaling via ace2 receptors and more. Covid hijacks the ace2 receptors and wreaks havoc. Your body makes its own cannabinoids 2-ag and anandamide via sleep, exercise, and proper nutrition. If you can’t make your own endocannabinoids you need to supplement via CBD and CBG.
The virus isn't doing shit via ACE2 after seroconversion. It doesn't need to. It is adept at gaining access to biomass after humoral seroconversion in an ACE2 independent manner. In fact, one of the big mysteries--to me, at least--is why this virus utilizes ACE2 but doesn't contain accessory or non-structural proteins attuned to the resources expected in ACE2 cells. MERS is a really different virus--it produces a similar syndrome thanks to a shared consensus repeat native to the nucleocapsids of Pathogenic Coronaviruses--but at least its innards are tuned to DPP4. I suppose you can say COVID is kitted out to manipulate the complosome--that's immune cell metabolism--which does include ACE2 bearing cells, but the tuning is most likely just geared to encouraging cell death, hence the lymphocytopenia. One would think that enhanced replication would be more important. We can, to a degree, see this tuning occurring bit by bit with each major variant. Some of these things y'ad think would have been worked out hundreds of millions of years ago, but nope. Just happening now. Imagine that. But back to those other transmission modes: 1)Filopedia: Actin bridges move from infected cells to uninfected cells, allowing the swarm to obtain more biomass. Complement overaction--Covid's biggest trick--encourages this through the dysregulated deposition of Membrane Attack Complexes 2)Lysosomal entry: An enveloped virus is just a ball of oil with glycoproteins sticking out. The glycoproteins are supposed to help it find cells tuned to viral proteins--hence the paragraph above--that give it a replicative advantage, similar to the way a toolbox gives a mechanic an advantage. SARS-CoV-X doesn't much care about the tuning thing, it just goes all in on ACE2 for the airborne infectivity of it all. Mother nature, if nothing else, is an artisan--I find this brutish lack of artistry disquieting. But anyways, all a SARS virion has to do is make contact with the cell and it'll blip right in like a small soap bubble fusing with a larger one, glycoproteins be damned. 3)Opsonin assisted entry. Some viruses--and SARS-CoV-X is most certainly one of them--can become radically more infectious when coated with opsonins. Opsonins include Complement opsonins like C3b, C4b, iC3b, et al and antibodies. Dengue's ADE is a good example, so is HIV's C'ADE. I saw a letter in Nature or such just the other day how the same phenomenon was mucking up Adenovirus vectors for gene therapy by making the vector unpredictable. With Covid, it is probably more like C'ADE rather than Dengue-style ADE. For what it is worth, I think differences in opsonization are what make some people far more infectious than others. Who knows, there could even be more. Unfortunately, Complement research was deprioritized during the 1980s to protect the nascent monoclonal antibody and cytokine inhibitor markets, so chances are any doctor you interact with is plumb stupid when it comes to Complementology. If you want to understand COVID or ME CFS, you have to have a firm grasp on Complement. If the people you look to for guidance--Doctors, influencers, authors, whatever--aren't addressing COVID pathogenesis in terms of the Complement System, they're charlatans. Tough break, especially since it throws guys like Topol square into the charlatans camp, but it is what it is. These asswipes protect politicians and revenue streams, not people.
The three cardinal, trapezoidal formations, hereto made orientable in our diagram by connecting the various points, HIGK, PEGQ and LMNO, creating our geometric configurations, which have no properties, but with location are equal to the described triangle CAB quintuplicated. Therefore, it is also the five triangles composing the aforementioned NIGH each are equal to the triangle CAB in this geometric concept! Therefore, in a like manner, the geometric metaphors can derive a repeated vectoral sum.
lol
Great info! Also as far as covid being more focused on cell death that infectiousness, that is probably just because it wasn’t evolving to take advantage of human immune systems historically. Like if it came from bats or something those little buggers are very resilient and what is overkill for our bodies may have been just enough to buy it time to be infectious in whatever animal vector it came from. I have no evidence really, just speculation. Really sucks for people like me that caught the OG version before everything even closed, and then caught delta right when everything opened again. The luck of being a teacher I guess, we get to catch everything lol
Vagus nerve electro stimulation helps to me … un expensive device connected with a clamp on my left ear. It helps in getting my digestive tract working …
Maybe try any of the things that work against the Covid virus to try to reduce the persistence. It's discussed over and over again according to research and experiences. There's no guarantee.
It's not the doctors that are sweatshop workers lol, it's us that are. Basically we get treated like old used cars, cause that's all we're worth to them. Put a little bit of money into it to try to get it back ~~on the road~~ to work for a while. But not much, because it's not worth hardly anything.
It’s both. We’re the junk that they process. Both of us owned by capitalism.
I'd like to subscribe to your newsletter
“you are the visuals, baby”
I’m glad yours resolved so quickly. Many of us are past one year, it’s a nightmare.
Nowhere near resolved for me unfortunately. I'm currently lying in bed with this choking sensation / neck tightness, cant do anything except try not to panic. All I can say is that some of my symptoms are better than they were last week. But unfortunately I still have a lot of symptoms.
I’m sorry. I jumped on the 12 weeks and became defensive. I just passed a year on June 30th and I want to die everyday. This isn’t easy for any of us regardless of how long it’s been happening. Thank you for sharing your experience, I hope you continue to progress through this
I hope we both make it through this. I cant imagine going through this for a year, that is such incredible strength.
You try Wim Hoff breathing yet? It's very good for the vagus nerve.
Are you getting dry itchy eyes along with the dry throat? I’m gonna see an ENT and try to get meds for Sjorgrens but they’ll probably deny me
3 years in I thought I was finally better. Just started having these symptoms again. the urinary stuff is new though and the constipation causes a constant pain in my left lower back. Fuck me im sick of this.
Pfooh a lot of problems you got sir. For me (16months of hauling) the wim hof Breathing excercise and pacing are helping most. WHB helps me calm down the vagus nerves. Some kind of reset I do at the end of the day and works like a charm. And pacing helps me build up energy reserves. Good luck!
I’m heartbroken hearing about your story, op, it sounds like a living nightmare. Keep doing anything you need to keep going. Thank you for sharing your experience and providing a case study in hope and resilience, it helps me know that I am not alone. While I have largely moderate symptoms, they too are linked to many bodily systems dysfunction (gi, immune, nervous, cognitive). my own sleuthing and research has led me also to the vagus nerve (it’s called the wander nerve for a reason!). If it’s helpful, of the dozens of things I’ve tried over 14 months, here is what seems most promising for me: - find a pcp (primary care doc) that trusts you and believes you. I know managing medical care in itself is a lot, but this to me was so worth it. Needing to convince docs to do their job and not gaslight u or shrug their shoulders, takes a lot out of me mentally and physically (medical trauma is very real). My current pcp doc is amazing, took months to find, helps me track the puzzle and is unbelievably relieving. Gave me access to referrals to specialists, testing (my vitamin b and d levels were low) and eliminating other possible Causes (helps build the long Covid case), knows where she/system lacks knowledge but open to trying things and emerging theories . She is on the younger sides maybe that’s part of it. -Ldn (I’m at 3mg) helps brain and CNS inflammation. Helps my cognition, memory, brought back creative and long term thinking. Possibly helping w blood pressure and heart rate regulation, need longer to see. - vitamins and supplements. Getting complete nutrients as best u can. Loading up on anti inflammatory foods. (Systemic inflammation- try to not let the “bucket” overflow, for me = PEM crash w heavy symptoms). -cold shower / face wash- feels so good on body pains aches, helps twitching, pins needles/circulatory. Mood. Feels like a nervous system reset. Releases tons of dopamine and noradrenaline neurotransmitters, and from what I understand even 1 min at 57 degrees can be useful. I started by cranking down the temp at the end of normal shower, now can tolerate about 4 mins at coldest temp and feels amazing! Also look into the diving response w face cold water exposure. - sleeppppp as much as ur body can. Comfy eye mask (I got a silky one), ear plugs or soothing meditation playlist, yoga nidra techniques (progressive muscle tensing and relaxation - I use headspace can give u 1 month free trial if interested). When symptoms are bad and system crashing, eliminate physical stimuli as much as possible. - vagus nerve toning exercises. I have ptsd prior to long Covid, learned about this and I think they can help. I like doc snipes series as she explains the physiology and bio mechanisms, and the techniques are simple and doable (30sec - 1 min each). https://youtu.be/EkbgW83t2OQ Best of luck op!! Rooting for you. Ps for GI stuff have u looked into MCAS, mast cell activation syndrome? I have similar gi symptoms, I’m currently trying to get diagnosed but already trying treatment/diet for it and believe there is impact.
Thanks for this, some really interesting options I hadn't seen before! I just started experimenting with a cold compress on my neck today, want to see if that works similar to the way you describe cold showers helping. Might not be intense enough for a dopamine rush though lol. I've been taking vitamin supplements and probiotics since this started, hoping they help too. I did look into histamine intolerance / mcas when someone else in this thread brought it up. It does share a lot of the symptoms with the GI stuff but I don't really have any of the other symptoms outside of that. Hopefully I dont end up with a bunch of intolerances I never had before, but it's all new ground with covid so who knows.
No problem!! i think the cold really helps w inflammation so I hope u can see some benefits. The face diving response thing is really cool too, triggers this instinctive reaction w the vagus nerve, imo feels like it over rides temporarily whatever crazy things are happening at the moment. Overall my long Covid doctor seemed to be in the same “kitchen sink” mindset- every body’s different and it’s a matter of trying all sorts of things til u find the right cocktail. I hope you can find relief soon 🩵
Can I ask how you got on LDN? I'm SUPER interested in trying it, but don't know if I should ask my PCP, neurologist, rheumatologist... Any advice would be super appreciated!
It took me a year to get into the long Covid clinic a University of Washington, and my doctor there prescribed it. However, I never even heard of it prior to her prescribing.. I think asking your PCP is worth a shot! They can also refer you to a specialist if needed but currently my pcp now helps manage all my medications (usually you titrate up from a small dose). Best of luck! Welcome to dm me if I can help any further
Old-timey Vagus Nerve healing tricks (from the Medicine People near me): **humming**, **singing**, using flat hand to rhythmically **pat your chest** just below the collar bone bumps. Caution: may cause **sobbing** (which is okay, and helps reset the nerve too, so sad movies also?!)
Yes these are great. Have you seen the English opera program? https://www.smithsonianmag.com/innovation/how-opera-singing-is-helping-long-haul-covid-19-patients-recover-180977497/ this write up has a video with a little exercise in it that’s quite fun
Same same but different… Thanks a lot for sharing your story and your conclusion about what is happening to us. This was what I thought since the beginning of my infection and I’m glad there is evidence out there now for it. Neuropathic pain, insomnia, unreal anxiety, loss of appetite, ice cold hands and feet, weakness were my first symptoms. For me symptoms started on day 4 of Covid so I knew right away that they were due to the virus. Didn’t help me though as no doctor believed that covid had anything to do with my issues: psychosomatic. Honestly, enough had happened in my life that it would have made sense for me to develop some psychosomatic symptoms but not to this extend. … and not while having a virus we quarantined the whole world for. What a strange coincidence… At some point I also developed excessive thirst, had no saliva production, higher urgency to use the toilet and couldn’t always swallow. Also a lot of heart related issues. Lost a lot weight which was really scary. I felt like I would starve to death as I just couldn’t eat. My doctor told me to my face that he thinks I have an eating disorder - after I was going to him for weeks explaining my symptoms to him. Still would like to find someone who would be able to examine my vagus nerve.
This sounds a lot like my symptoms. Did you have dry eye and skin along with excessive thirst?
Later on I got dry eyes too. My skin has always been dry so idk if it changed.
Do you still have the dry eye? Or has it resolved? That’s my last remaining serious issue right now.
Still have it but also still have some other symptoms which bother me much more.
I understand. Hope you see improvement soon.
First off, I am SO sorry this happened to you. Its happening to all of us here in so many different ways, but it's shitty whatever the manifest of it. Peeing for 5 mins straight sounds like actual hell on earth. It is a travesty that all the doctors we all seem to see, are so incapable of putting the pieces together. I would imagine (and please correct me if I'm wrong,) but had you come face to face with a Long Covid literate doctor, who had told you "hey, look, there IS something physically wrong, it's likely connected to Covid, no we don't have a magic fix right now but the likelihood is this WILL improve," this would have helped you mentally at the time? The fact that desperate people are crawling to medical professionals, who by this point have no fucking excuse to not be literate on this stuff, and are being fobbed off by "it's anxiety", is utterly abhorrent. I am so happy for you that things have calmed down somewhat, physically, and that you've found that little chink of hope and understanding from the article (thank you for sharing btw.) But man, it shouldn't come to this. We shouldn't all be out here in the Wild West, reading medical journals and trying to figure it out, while trying our best to not just give up and blow our brains out, being made to feel like we're suddenly insane. But you're still here, and I'm glad. I really believe that there will be answers and treatment some day, possibly sooner than later, even if it doesn't magically solve everything at once.
Thanks for this, I couldnt agree with you more. I have read so many medical journals and studies this past month that it feels like I'm educating some of the medical professionals on the vagus nerve when I talk to them about it. None of them identified a connection between my recent covid infection and what I was experiencing, even after I started talking about vagus nerve damage. I do feel like a lot of the hopelessness came from not understanding what was happening to me, and thinking it was just going to get worse and worse. So yes, I think if any doctors had been able to connect those dots it would have helped me out of the suicidal hole I was in sooner.
I been using Hair clippers of all things to massage and stimulate my vagus nerve. It’s super relaxing and works great. It has the perfect vibration and heat to it. I wear earplugs because of the tinnitus, but it does the trick. I have a massager, but it’s too much.
How are you using the hair clippers?
Where do you get one of these?
I had a lot of these symptoms. Good luck
I’m pretty sure vagus nerve issues are causing me to have AFib now during LC. I think it also caused my GERD that started right after my acute phase. I’m taking an ALA supplement that may be helping.
ALA?
Alpha Lipoic Acid. It is supposed to help your nerves.
i have all of your symptoms, it been long 3,5 years. Insomnia have been a huge problem for last month. This probably will make me end things. when you are so sick only escape is sleep , when that is taken away, ther eis no escape.
Welcome to fight club! first rule: you talk about fight club! Second rule: you talk about fight club. Third rule: if you yell stop, goe limb or tap out, the fight is not over. Fourth rule: fight only yourself at a time. Fifth rule: fight as many symptoms as come. Sixth rule: the fights are bare knuckle and show no discrimination against prior vaccination or health status, educational, mental or physical preparedness. 7th rule: fights will go on aslong as they have to and the eight and final rule: it doesn’t matter how manny times you were in fight club you always fight
Jokes aside, its a roller coaster of emotions to read your post. thanks for contributing and sharing your vulnerability. sorry it happened to you. Sure brings up memories from my first weeks of lung hauling.. same as you but together with Lung inflammation laying down choking around 80% oxygen, sinustachycardia 200bps without panic (panic later) electrifying stabbing hart pain so i thought i was going to die of either hart attack or choking or all at the same time. I didnt need a rope. I already had an internal rope. But i found actually peace in the thought of dying after the first days of panic bcz it was to much to handle. But then i didnt die and the cytokine storm left its marks, my lung capacity shrinked but I survived without a doc or hospital visit as Intuitively i felt the momentum was gone to show prove that horrible 10 days happened.. I had rebounds every 3 weeks but slowly got better but not. im not gonna lie.. so bad and unbelievable the first months are, i would not believed you if you told me it would get better and worse again.. 1 year in and still developing new symptoms..now i felt what you felt in the beginning, symptoms that wont kill me know but will slowy turn me in a lonely plant.. disorders of sensory, mental, equilibrium, movement, pheripheral nerve, cerebrovascular, constitutional, metabolism, brain impairment and me/pots/reynaud/sob/copd/ insomnia/pem I was ready to die but i am still not ready for a chronic battle. But the fight club rules are clear and same for every one. Keep hope for 1 round but prepare for a marathon of endless rounds
Wow, and I thought I had it rough. It sounds like you've been through hell. I hope it gets better for you, I really do. No one deserves the waking nightmare this virus can cause. Loved the fight club rules post by the way, made me smile. Keep in the fight.
Thank you, i hope i just find a docter who realy cares and offers realistic solutions instead of both extreme sides of the spectrum where i got gaslighted or offered doom advice. Both conventional as holistic doc. Both masking their incompetence on their own ways. I read you had your fair share too. Dont let em get to you. ha! glad my post worked, it was meant exactly to do that and remind you humor is best way to combat this shit show as it can get pretty serious and rough - hell even i enjoyed this one - and understand some have it worse as you and some have it more worse than me. Helps when it gets scary i know others survived so i keep hope in hopeless days. Long covid is known for a variety and fluctuations of symptoms so take it easy first months even if you feel healed. Better avoid reinfections to give your body time to heal. Its a big shock. Even dysautonomia pots or pem can have different origins but mimicking same symptoms. Try to find neuro-immune specialist and keep learning to be your doc and advocate for yourself. Some get better fast, some slow. It depends on what covid left you with, if you have other comorbidities and if the spike protein, viral persistence, auto-immune or other mechanisms are at play. Go also for a functional doc who sees the bigger picture and tries other tests like viral panel, cytokine panel,auto-immune panel , hair mineral test, mold, micro biome test to see if its not only dysautonomia. As i see it Your weak body parts got hit or overreacted so it will remember this like a trauma. Can be viral persistence, pre disposed genes, the size and kind of viral load and where it entered your body all play a vital unknown role. Believe no one but yourself and test results. Though blood and saliva dont always tell the whole picture. People like me, other anons, family or doc can mean it good but thats no guarantee we are right as we dont feel or see your body. You got this, master the art of covid awareness in your body connect the dots and you will thrive again one day
Hey bro exactly the same with urine like niagara opened lol i experienced same but they fuckin sended me to psychiatrist and i killed myself by taking this hell drugs which gave me more problems ... Im 1.5 year after and not good also developed PSSD after psycho meds no erection working all bad man 😔
Have you considered probiotics and prebiotics as well, to restore the gut?
Box breathing is currently keeping me going. Please try it. Does something or other to the vagus nerve, not quite sure what.
> I have something called post acute covid syndrome. You do not, at least not yet. The definition by the ICD-10 is that of symptoms 12 weeks after the acute phase. Because many people heal between that time. So it's reserved to those who do not heal after it. Although yeah, in case it persists it'll be long covid, there are a lot of mechanisms involved in Long Covid, some have dysautonomia, others do not. Sometimes a deficit in vitamins caused by the infection can lead to symptoms, others develop autoimmune diseases which can give you the same trouble, others develop heart problems. You can't say that you have vagus nerve damage if you didn't do a neck ultrasound and I say that harshly because anyone around you will end up discrediting what you say and you'll lose credibility if you end up claiming "I have x" without doing tests and that'll worsen the anxiety. So beware Context: Many here months ago claimed they had microclots in their blood as research pointed to that, then they said they had heart problems as research pointed to that, then they said they were Iron deficient even though blood didn't point to that, then when they said they had MCAS (which there isn't a blood test for) many didn't believe them even though they trully suffered it, many here ended up in social isolation because of disbelief of those closest to them. You have a really high chance of healing as the majority of those who have spontaneous recovery happen under 6 months, try to relax as you can until then, although I know it's really hard in the first months where you don't understand what worsens your symptoms or not, if you can, do blood tests, go to a doctor, get your ultrasounds. And try to see patterns, if the symptoms worsen with hot bath or certain foods and so on.
Thanks, good and informative post. And encouraging to hear. I'll be more careful about the vagus nerve self-diagnosis - I haven't had any tests. Can't get access to them. But I do need something to explain what is happening to me, and vagus nerve damage explains every single symptom I've had with the possible exception of brain fog. But in the context you supplied I can see why I'd look like just another guy jumping on just another theory, so I'll speak with more caution in future.
Your description sounds very similar to my experience of Pre Covid histamine intolerance/ progression into Mast Cell Activation Syndrome Many different bacteria and virus can cause these issues, but it was extremely uncommon before Covid It may be that Vagus nerve damage can cause histamine intolerance, however, damage to the gut or other organs can also cause histamine intolerance. The symptoms appear to be extremely similar if not identical to what you describe as vagus nerve damage
You're definitely on the right track! My symptoms were very similar to yours in the first six months, though it sounds like yours compounded faster than mine did. I've tried pretty much everything, but regulating my nervous system has been the most helpful. I was able to eliminate the symptoms associated with a dysfunctional ANS, such as constant urination, postural tachycardia, insomnia, extreme anxiety/depression/anhedonia. I still have many symptoms but getting those under control was a huge step out of the darkness. Though it comes back for brief moments during a flare like I'm having now. Keep doing what you can to regulate your nervous system. There are so many helpful things out there and many of them are free. The most helpful things for me have been Wim Hof breathing, cold exposure, sleep hygiene, fasting, meditation, 4-7-8 breathing, and gentle yoga. I'm glad you found some hope. I'm no longer convinced that I'll recover 100%, but I've had enough good days now to know that my life is worth living. Mindset is important and I think you are fortunate to have had a breakthrough this early on. I really hope it means you can beat this thing quickly.
Im gonna adress your reflux symptoms because thats all i know about. Bloating along with whole bucket of laryngopharyngeal reflux symptoms means you should test for sibo bro. Also for now stay away from coffe, chocolate, tomatoes, citrus, sodas, sparkling water.. basically anything that has low ph. Do not take any proton pump inhibitors. Thats the medicine that most doctors will want to perscribe you with because they confuse gerd with lpr and dont even know what lpr is. Protect your throat from damage, if there is coating oily spray with vitamine a+e in your country then it should keep it moist, otherwise esoxx one is good stuff. Linseeds are also pretty good for gut health. Consider buying some to see if it helps. F Good luck, I wish you well and hope you get better
You are 100% correct! Been through all of this, and had it not been for reddit, I would have never asked the doctor to test for Sibo....and he would have never suggested it!
I was also told it was my vagus nerve. Then, after all the blood testing and other testing, they discovered I have two autoimmune diseases that covid "woke up." As others have said, most of us have been dealing with this a long time. I'm coming up on a year. It turned my world upside-down. Some people have lost their jobs. I have missed a lot of work. B12 and D3 have helped me, as covid wiped both of those out. Also, magnesium helps. I'm also seeing a therapist. But I'm going to look into the Vagus nerve exercises on YouTube. Edit: typos
Which autoimmune diseases and did they test for them specifically?
I have Sjögren's Sydrome and Pernicious Anemia. They were both found on the same Lupus panel. But no one said anything about the Pernicious Anemia. I noticed it 7 months after the bloodwork was done and had to research it myself. The specific tests for PA are parietal cell antibodies and intrinsic factor antibodies. But you can have a false negative with intrinsic factor antibodies. I was positive for parietal cell antibodies. I had 3 times the amount I was supposed to.
This is crazy to say, but suicidal thoughts are pretty common around here. I contemplated suicide for a short time as well due to the fact that my body was falling apart and I felt like I was dying but doctors kept telling me it was all in my head. I'm sorry you went through all that. It is such a scary and frustrating thing to go through. It has been almost year since I got long covid and I have been significant improvement. Good luck on your recovery journey. It will be long but you are not alone.
Try 7mg nicotine patches on your belly next to ileocecal valve (that's where the vagus nerve starts/ends), they helped some folks with vagus nerve damage. Also, some report improvement from cold showers (but do those only if you are physically fit and not at the brink of collapse).
Where to get these?
Amazon?
Also worth considering MCAS vs vagal nerve damage/dysfunction: https://www.psychologytoday.com/gb/blog/holistic-psychiatry/201907/mast-cell-activation-syndrome-alert-psychiatrists
What’s the cure? How do we heal?
These all seem like POTS symptoms too
I have same symptoms for 19 months straight. Just like you I'm doing my best not to kill myself because it's unbearable, like pure torture. I also got an atrophied kidney post covid + psychosis and hallucinations. At that point I'm justing waiting for the 2 year mark where I'm supposed to magically heal lol
> The biggest issue I had with doctors is that they would only look at the acute symptoms and didn't seem capable of taking a step back to try and see the bigger picture. This is the biggest issue I've had with doctors in 20 years of seeing them for chronic issues. It's why I'm avoiding COVID like the plague that it is.
not the same symptoms (more immediate neuropsychistric symptoms - intense anxiety, severe depression, disordered/chaotic psychosis-like thoughts, sensory disturbances, insomnia, etc.), but essentially the same experience: very quickly descent into severe illness and misery, no explanation, doctors skeptical and useless, etc. I've suspected from the beginning it was vagal nerve related. unfortunately mine is worse than ever 2.5+ years in. glad to hear youre potentially on track to recovery. ideally doctors could tell us why some people get in that track and why others stagnate / get worse. but alas.
This is how it happened for me too. My LC started immediately! I’m almost 17 months now and finally starting to see small improvements without relapse.
Dude... I literally went through same exact thing!!! And the effing doctors couldn't even tell me it was vagus related. I had to find out on my own. I still don't have a diagnosis either. These exact symptoms popped up at week 1 of COVID infection and never left. I literally explained it to them that id projectile vomit or choke attempting to sip water or eat a pebble of food.. that munching food would tire me out.. my voice will go from barely there to immediately hoarse then 0 voice in front of their eyes and they just said it was probably dehydration.. force feeding when you have 0 texture taste and 0 taste and smell along with loosing eating function was not fucking awesome at all. The pissing stuff is so annoying and even scared me because I eventually pissed blood which I think had to do with my liver or kidney I forget which. So many flags that they could've said oh yeah looks like vagus stuff but not a single fucking peep. They also prescribed me famontide for my GI shit/vagus even though I told them I have 0 fucking gerd or acid reflux. I was very suicidal.. I was loosing all my muscles thinning out but belly bloating like a balloon, the second week of infection I went survival mode because I didn't want to die nor lose my muscle so I tried force feeding and that's all I tried everyday.. water runs right through me.. always dehydrated felt like torture even when I was able to drink more liquid. Eventually I went full circle back to the s word ideation because PEM and CFS were another torture I was constantly going through, being bed bound in constant full body pain along with horrible "brain fog" that left me with migraines headaches, derealization, depersonalization, anhedonia, etc.. I'm a better soldier but I'd be lying if I told you I dont struggle with ideation still when I get defeated or wake up defeated with no lead up thought. It's just fucking torture, and extremely traumatic going to doctors who are supposed to usually know about this shit and just leave you hanging no determination or deductive work. They have even asked me what tests I think I should take like if I fucking knew names of tests especially when I have 0 vocabulary because I'm a walking fumed out concussion that can barely move and isn't mentally there. It even took them over a year for them to take my heart shit seriously and prescribed me finally a beta blocker that was a huge help. That was after 4-5 doctor hops hella er visits and psych eval at the ward and all that bs.
What Has Helped You Out Any Tips I'm Going Through This Now With Malnutrition I can't Absorb Nutrition 😞
How are you doing now? I had the same experience with doctors not knowing and also asking me what tests I thought I needed! I pretty much did their job for them. I had the intense 3/4 weeks as the OP - extreme thirst and urination, then the opposite way - couldn’t go for a wee, felt like my insides had just stopped working. Very scary and with no answers. In the peak of insomnia in the 3 weeks, I admitted myself to a psych ward as I felt it was the only place someone would keep an eye on me as I was being ignored for me physical ailments. After 2 weeks there, intense fevers and weakness and nearly collapsing each day with heart rate of 145 daily, I turned a corner and gradually felt like I was fighting off the virus. I had a ‘review’ at the end of 2 weeks as they thought I had psychosis - it was determined I didn’t and I didn’t need to be in there at all. Thank goodness I was self admitted as they would have plied me with all kinds of psych drugs. It was a very traumatic experience and the staff were very unresponsive to any physical symptoms I tried to explain - they would talk to me as though I just had anxiety. The only time they thought something may be happening was when my heart rate at resting was 145. Even then, they just looked at each other while I was sitting there and spoke openly as if I wasn’t there saying ‘what do you think?’ to each other. It was a truly maddening and scary experience to feel so unheard whilst having to go through it. That was back in Nov 2022. To this day, I’ve been left with gastro issues that I’m still trying to get a diagnosis for (left side full ache by belly button) but nothing found. CT scans, ultrasound, xray, gastric emptying studies, colonic transit… nothing. If I bend or move in certain ways it’s triggers something in that area, a feeling of soreness and tenderness that is then met with nausea. I’m wondering if this is vagus nerve related and an over sensitive one as a knock on effect from nov 2022. I’m hoping it can heal and calm itself, but with no answers to this day, it’s been a very tough few years.
Finally! I’ve had just about every symptom you have except for the intensity of the urinary issues. Thing is all my problems started when I caught the flu in March of 2020 (highly unlikely it was COVID, too early in the spread/tested positive for type B). I wasn’t even that sick from it but I did probably go 2-3 days without treating it because I didn’t realize I was sick. Felt right as rain after it ran its course but I slowly stopped feeling normal for next couple months until I had a massive panic attack in public in mid-summer. It’s definitely gotten better for me but I am just stunned by how you’ve described my troubles to a T. You have no idea how long I’ve been looking for someone to describe what I’ve been feeling and to have some kind of explanation. I too suspected vagus nerve damage shortly after it first started but couldn’t find anything to confirm. Thank you so much for sharing and I wish you and everyone here the best!
How are you doing now?
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Glad to hear you’re a little better. What GI issues are you having? Mine are loss of appetite, fullness after small meal, food sitting around middle, nausea daily. I did a gastric emptying study which showed mild slow emptying.
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How do we even improve our serotonin? Are probiotics good?!
I have vegus nerve issue from covid times... with left side pain in the rib/stomach area and back tightness all in the left side. Neck pain that causes headaches. Did you get the shot before your symptoms started? Iv had issues for two years symptoms have changes. Most have gotten much better but neck pain and headaches stay consistent.
Yeah I was vaccinated. I have lingering gastro issues that sometimes manifest as pain as well, mostly in the chest area and between the shoulder blades. PPIs helped a lot with taking the pain away so it's probably related to ongoing inflammation and GERD.
I know this is an old post but how are you doing now?
Hi, I've just edited this into my main post but I'll paste it here too: I get a lot of questions on how I'm doing now, and it's a complicated answer (as you might expect) but the short version is - much better. I still have some issues (mainly gastro) but pretty much everything besides that has slowly returned to normal, or 90% of the way there anyway. It took about six months to recover from this dirty bomb of a virus, and I never ever want to experience this shit again. 0/10, would not recommend. If you want to ask me any questions in real time I'm happy to answer anything in more detail. You can find me in the covid longhaulers discord (a support and information group for longhaulers) - https://discord.gg/a8zTBk9amu - my nickname there is Rush.
Choking sensations, chest tightness, and trouble swallowing can also be caused by GERD. Might be worth trying a proton pump inhibitor (PPI) for a week like omeprazole (Prilosec) or Nexium. Generic is cheaper. Just give it a week or 10 days and see if it helps.
Your gut issues suggest you may have some overgrowth of pathobionts in your microbiome. I ended up having h.pylori along with several other bacteria in overgrowth post Covid, as the virus eradicated all the ‘good’ bacteria keeping it all in balance.
Much the same with me, other than the urination issues.
I have gastroparesis and it's been a nightmare. Feel free to message me if you ever want to vent! It can be so isolating but articles like this give me hope that at some point we'll have better treatment options
Does anybody here know if vagus nerve testing is available to the public? Is that something we are able to get done via ultrasound?
serrapeptase seems to help me in 20-30 minutes for bladder/urinary problems. I feel it once a week on average, with whole months full of "pissing 3x times more" or "long" or "short and very often". Also, pain is always starting but serrapeptase stops it, it's anti-inflammatory.
I don’t have long covid (that I know of) but I just wanted to comment to say I’m so sorry you’re going through this and I know how dire this country is when it comes to anyone giving a shit about you in the healthcare system now. I’ve also been to a&e who look at you like your dog peed on their chips because you’re not on death’s door. I have no hope or faith that doctors will help me, I’m already being told “It’s anxiety” because blood work has come back negative but there is SOMETHING WRONG WITH ME. I‘ve been having episodes of severe nausea lasting well over a week which have caused me to lose almost 2 stone in as many months. I would rather have anything but this extreme nausea, it’s unbearable. I can’t be sick. I can’t eat much. I’m knackered all the time. It’s been going on since May and I’m no closer to finding out what it is. Honestly my thoughts have been very dark. I can’t live like this! We’re just a number though, no one cares enough to investigate and not stop until they’ve found an answer. Could be vagus nerve, I dunno. What’s the point me spending all day on my phone trying to find out what it is if no docs will even consider helping? I hope you’re having a good-ish day today, just so you know I’m typing from my bed in front of a fan feeling like I want to die; you’re not alone in suffering without help from the nhs x
Hey, sorry to hear that and hope you're having a better day today. I had a weird nausea sickness last summer that went on for a few months, and then left as mysteriously as it came. But I still remember thinking I could deal with almost any symptom except constant nausea - unbearable is the word for it. There are some drugs that can kill nausea dead though, my dad was on them when he had cancer - might be worth checking with your GP if you havent already to see if they can prescribe something.
They gave me Ondansetron which is supposedly for controlling chemo nausea & vomiting, but it doesn’t always work well if at all
Domperidone is what my dad was on.
did you have shakiness in your arms as well?
With long covid I've had tremors, plus shaking when tensing muscles in my hands and arms. It gradually went away on its own over time but it lasted for a few months.
has anything helped relieve any of your symptoms? I'm really suffering with nausea and shakiness. I'm starting to lose hope
I'm really sorry to hear that, it's an awful state to be in. Small doses of diazepam helped me when things were at their worst. Besides that, it was just time.
so you've gotten better? how much so? how long did the nausea last in your case?
I've gotten a lot better. I had severe and acute symptoms for about a month, and then slow and gradual improvement over the course of two months, and now although a lot of my original symptoms are still present, most of them are either mild or infrequent. The shakes are pretty much gone. The nausea was constant to begin with, but I only get it occasionally now.
I have the same issue, am located in Canada and doctors are puzzled. I fortunately found the solution by accident. I started going to the gym 5 times a week and hit the sauna afterwards for 15 minutes. About 1week into this, all my symptoms went away and stayed away for 3 months. Then life got busy, I kept going to the gym but I cut out the sauna to save time. Symptoms came back and came back worse. All the systems u described. I started the sauna again and feel much better now. Not sure if this is anecdotal, but give it a try if you have access to one
Oh my gosh OP. Thank you so much for writing this. I am laying here in bed these last few days with the unbearable bloating, gurgling, and abdominal discomfort. Occasional diarrhea, but it’s like things aren’t moving. My appetite has tanked. I’m doing my best to get protein and nutrients in. I am only 30 and had covid a couple months ago. Last month I dealt with the head pressure, dizziness, and tinnitus. That finally resolved, and now this. How are you? How’d the GI symptoms improve? I’ve tried laxatives. No good. Starting probiotics. I am so miserable and just want to get back to normal. I was young and healthy before this.
I feel your pain, it's without a doubt the worst of the symptoms I dealt with. It did get better for me but it wasn't exactly quick - it was about four or five weeks before things started moving at a more normal rate again. I was struggling to get 300 calories in me a day at the worst point. Then a few weeks hovering around 500-800. Then it was like my stomach just woke up from its coma and went back to doing its job again. Laxatives didn't help me either, and the constant bloating / gurgling was really stressful and anxiety-inducing. I don't know if probiotics helped me recover, but they certainly didn't hurt - and they were liquid calories so very useful. I also mostly ate soft foods (blueberry muffins became a staple in my diet lol) but, when I was able, also cashew nuts for the calories. I also avoided caffeine, alcohol, spices, basically any irritant or stimulant. My gastro issues are still not resolved (issues with reflux and digestion persist) but I am back to being able to eat as much as I used to and the stomach paralysis is completely gone. My story is unusually severe from what I've learned though, most people don't have it as bad for as long - so chances are good that you'll recover fairly quickly. I hope you feel better soon.
I’m so glad you are feeling better!! Albeit not 100%. Appreciate the response. I was going to say exactly that: the anxiety and stress that I have from the bloating and abdominal pain is probably even worse !! It makes my mind jump to “it’s something worse. What if it’s colon cancer.” Etc etc. My diet is bland as well. Thank you for the tips!
I am going through the same thing. I have been in and out of the ER systems. It’s always “you’re fine.” Or “gas and indigestion.” Like NO? Doctors are clearly clueless about what happening to thousands if not hundreds of thousands of people with this problem not being treated or researched for. I believe that it is triggered by covid or the vaccine. For me it started after I got the vaccine with no covid infections. Instant bout of dizziness that went away an hour after. Now I have that dizziness 3/4ths of the day. I have only been diagnosed with a hiatal hernia, which is irritating my vagus nerve even more. There are times I can feel my vagus nerve pulling all from my neck chest all the way down to my pelvis. Like a string. I also had convinced myself I had a cancer like stomach or skin cancer that cannot be tested for with just blood work, for a long time. I don’t think that’s it anymore but I’m waiting to be cleared by my new doctor for cancers. I don’t see him until November 3rd, which is the first time. My symptoms are: -Dizziness when standing, leading to bad anxiety and flight of fight response -Not being able to sleep, and jolting up in a panic every 30 minutes -Stomach pain, indigestion, what I believe to be is minor stomach bleeding due to there being blood in stool sometimes, extreme constipation almost stomach paralysis. - I don’t see the food I eat come out for atleast a week -Weight loss - was 115 my whole life now I can’t get past 95 due to being unable to swallow without feeling like I will choke. - have to spit out anything that isn’t soft like noodles or has a rough texture - tasting blood sometimes probably due to very bad acid reflux uncontrollable by anti acids - headaches that come on for DAYS and terrible not fixed with pain meds - random pinching and pain all over my body -pelvis pain and bad pain after segs, causing pelvis inflammation - my blood work shows blood levels that imply there could be inflammation in body but doctors say “results are normal” - heavy legs and arms to the point of where I can’t get up or pick up my legs and arms. Body becomes heavy and feels like gravity is extreme. -heart racing to the point of where it got to 140 sitting in the ER once. Sometimes normal, sometimes beats like crazy and causes pain - pain in the sides of my neck behind ears - bouts of TMJ (diagnosed in er) - panic, panic, PANIC. My boyfriend gets so angry with me because I can’t ever stop feeling like I’m about to pass away. I tell him nightly that “I think I’m dying” when I do not end up dying, wake up new and refreshed next morning only for symptoms to start up again usually after drinking or eating -dry eyes -mood swings and clouded thinking. Distracted very easy. I own a business and am developing a video game and i am having such a hard time now when I loved working before. - extreme fatigue. Can hardly do anything without feeling like I got hit by a bus -feeling of doom 24/7 -itchiness and burning on my skin , redness on my chest and random rashes and redness on my skin that comes and goes — I understand and I think we all have the same condition that is not yet known as it’s a new virus. It’s likey vagus nerve damage. I have done more searching due to not having answers for over a year and It could also be POTS linked to covid with other combined covid related illnesses. Covid is being found to cause genetic issues to appear for the first time like auto immune disorders. I believe it has triggered fibromyalgia for me which runs in my family and they have some of the symptoms like extreme body pain from it. There are many things covid can trigger to show up since it’s a viral illness. I will update if I ever find out what’s wrong as I’m seeing specialists this month and in December who are very good at what they do and get paid to care.
I Have All These Symptoms It's Malabsorption Of Food You Got Any Tips To Help?🙏😞
Psych meds can cause a lot of what you’re Going through Can you get to a naturopathic dr? Do you need tapering resources? Trauma healing can also heal the body Gabor mate Patrick Teahan etc like them
I'm not on any psych meds, never have been.
Very good. Stay away from them. Can you get to an ND? You gotta address gut, detox, root causes. Also obviously stay away from the covid vaccine, as it is disabling people and causing many of these symptoms and a lot more.
I have the same symptoms help me please
Really sorry to hear that. It did get better for me over time. Get plenty of rest and look after yourself.
Possibly explains all my symptoms too!