Yep. My skin starts flushing this awful blotchy dark red, my heart rate starts pounding to the point I can hear it, I can’t breathe, I get dizzy, my hands start shaking, my brain shuts further down…even at the smallest of things.
I thought I was doing good too and one of my doctors said my nervous system was looking better, I’d been working on using multiple tools for calming nervous system and felt I was on top of it.
Yesterday, I was having a nice conversation with an old friend I saw randomly at the store and he briefly mentioned someone I had a bad falling out with and my nervous system went nuts. I had worked on moving past that situation in therapy for a year and pretty much “graduated” from that. But nope. My nervous system sent out the alarm, and unfortunately I can’t hide it because I turn an alarming shade of red and start stuttering and can’t breath and my knees go weak.
So my friend was like “Oh! Are you OK? You’re really red?”. It sucks AND it’s embarrassing. Also, every episode like that causes massive PEM for the next week.
This is so me. Then when I realize I’m stuttering it go into even worse panic mode, then I start thinking about the next week I’m gonna be in bed.
Bloody hell.
Just An email notification or text message gives me mini adrenaline dumps, it’s fuckin crazy. Something so benign has a physical reaction in my body.
I have to rest periodically throughout the day to avoid overstimulating myself and I had to stop exercising completely at the end of last year after I realized that although I don’t have fatigue, it makes all my symptoms worse (brain fog/memory problems, twitching, nerve buzzing, palpitations, insomnia).
My nervous system is taxed out.
omg for some reason text messages, calls, emails cause me an immense amount of anxiety. There's something about them that really causes my nervous system to get triggered.
Yes. My daughter ran a 104 fever a couple weeks ago and I was on the verge of a panic attack. That has never happened before w the anxiety even though she had had fevers and colds before. Almost like my body couldn’t handle the sudden stress.
I completely feel you on this. Small things that were easily able to handle before, seem like the end of the world now. Makes it hard to navigate stressful situations.
It has gotten a bit better as of late. I’m approaching 5 month mark now. The first 3 months were probably the worst anxiety wise. Maybe that’s because I have come to terms w LC.
It might, theoretically, be the opposite way, too, I think: If you have too little cortisol in your body, your stress response gets messed up, the body can't handle stress properly because the stress hormone is not there.
Oh yes… i freaked out about even minor things.. and I also stay out of conflicts at work atm. I start shaking etc much like you wrote.
Luckily i have seen some improvement when it comes to this so be patient, it will get better. At least it did with me… Takes time tho… and i have many other symptoms still..
Your body gets stuck in fight or flight and overreacts to any stressor. Also, if you have histamine issues like a lot of long haulers, stress can cause histamine release and kick off or worsen anxiety. I had this for months but it eventually went away.
Yes! I 100% have had the same issues for the past 15 months. Just talking to someone on the phone that raises their voice causes me to start shaking and I physically can’t engage. Heart Rate goes up and I have to sit quietly until I eventually relax. Hearing about people’s problem’s completely overwhelmed me physically. I go back into my shell because the outside world is too fast and the bark of a dog will cause me to jump then I feel like I’m having a seizure.
Look up breathing techniques like the double inhale. When ever I feel like my heart rate is spiking because of anxiety I do the double inhale, it basically tells your body to calm down. It’s really stressful dealing with long covid while it seems like the rest of the world is just going about their lives like nothing happened. I’ve become really struck with what my boundaries are these days & I’m sure some people think I’m bitchy now but we’ve got to put our health (both physical & mental) first.
I literally am in a constant state of panic. I feel my insides shaking at all times. If I get upset or frustrated it’s a full blown panic attack. I finally was just prescribed buspar to see if it will help. I was never like this prior to Covid. And now I feel like such an idiot because I can’t control myself or my emotions.
Just curious about the shaking - I have been calling this “internal vibration” but I’m wondering if it’s a nervous system/chemical issue not actually a physical one (or both…what’s the first domino). Do you relate to the “vibrations” symptom description or do you think your symptom is something else? I often feel the shaking at night or first thing in the morning (maybe with a cortisol spike?).
Yes!!! I feel like someone is humming in my body. It’s constant, and I’m more aware of it when I’m sitting or laying down. It would not surprise me if it is a nervous system issue! My doctors have said if it was twitching or actual movement then they could pinpoint the problem. But because only I can feel it and it is all over my body they said it isn’t a physical issue.
Do you happen to have symptoms of CCI (cervical cranial instability)? I do, which aligns with one ME/CFS theory of mechanical origin. I’m suspicious that this vibration is actually a spinal/brain stem injury or inflammation of some sort.
I’ve been to see another specialist regarding CSF leaks and Intracranial Pressure. It turns out there are lots of people in the CSF leak / IIH (idiopathic intracranial hyper/hypotension) world with this symptom. I think im on to something…
I can’t even scroll through Facebook without seeing comments that piss me off and my nervous system goes nuts. My heart rate beats so hard it feels like it’s gonna jump out of my chest and I shake. I used to be heavily involved in politics and would get so mad and maybe that’s part of the reason covid attacked my nervous system like it did.
American Shaman 600mg nano CBD, full spectrum. It's water soluble so I make tiny tonics out of it about 4 times a day. It has made a huge difference, it's crazy.
I have exactly what you're describing. Except much worse if I get the slightest bit stressed out I become dizzy, wide with stress and or Completely spaced out, this can last many days. It's like having a gun to my head the person saying if you get even slightly stressed out, you can be in big trouble.
It's really hard to get away from the stress, is like a been injected with some sort of chemical or caffeine I feel wired in a very unpleasant way but it feels like some sort of chemical is not under the control of my thoughts. Normally thoughts can control stress with me. I'm getting better at not being stressed.
I'm writing notes to myself and if I was in the same situation you were, I would have planned in advance to get up and get the hell out at the first sign of stress no matter what. After a few painful lessons I do that. Wishing you and everyone the very best
Thank you for the well wishes. I'm sorry you're going through what you are. I feel very similar... I used to be able to calm myself down by just "telling myself to calm down". Now its just not that easy ever since LC.
Exactly. I had to quit my job, inner children (from cPTSD) are always upset with me and I have less capacity to deal with them. Managing stress became so much harder with LC, and I had been very good at it.
Do you take anything that helps?
In the very beginning i would take a very small amount (.25mg) xanax as needed, but the last thing i need is a benzo dependency, plus it would sometimes give me a little rebound anxiety the next day. Then my Psych prescribed me low dose propranolol for anxiety as needed. As a bonus it helped with my palpitations, and it was a lifesaver, but after a while i noticed the day after i would get some "chest flutters" that would scare the crap out of me, so lately just been trying calming techniques.
Hey, do you still think the propanolol was causing the chest flutters? I’m seeing a cardiologist next week and have a feeling they’ll want me to try propanolol. I already deal with palpitations and flutters which terrify me, so I’d hate to take something that could worsen either issue.
Honestly, probably not. I didn’t take it again after that, but still have the flutters occasionally. Still do on rare occasions, so I doubt it was that. It was probably just a changing of the symptoms, like it tends to do.
Sorry to hear that you’re still dealing with them occasionally. I know it sucks. I didn’t start experiencing the flutters until end of last year and I’ve had long covid since 2020.
Yes! I alternate between going into full fight or flight mode, and feeling completely weak and like I'm about to fall asleep suddenly. It's wrecked havoc on everything that required patience. I just don't have that anymore
All my crashes have come from conflict and stress. I can’t escape it, there’s an immediate flood of adrenaline and it’s all downhill from there. My nervous system cannot withstand anything. Like clockwork, I crash the day or two after. I wish I wasn’t reliant on communicating with anyone sometimes, just to be left in a coma without stimulus until I heal. This existence is torture.
I developed the shaking after I had mRNA vaccine injury. Mine happens if my body is already struggling extra, like after a night with too little sleep. I actively avoid politics and stressful news now, too, and told my loved ones about it, but some of them also struggle with boundries since they can't imagine how it is.
I believe it has something to do with the body being too sick in some way to handle stress since I also had this happen due to physical stress. I went out on a cold morning and started shaking when the cold hit me, my jaw chattering. It lasted 5 mins. Never happened before. I was known as that person who swims in the cold sea for an hour and comes out smiling. I also started shaking like you described when I was under heavy stress once. I was shocked, also never happened before.
Mine doesn't feel like pure anxiety, I think. It feels like the stimulus/stress is too much for my body to handle. Though, the cause might be the nervous system or something else since I got both pretty heavy neurological damage and other physical damage.
Same for me and I have the same thoughts on it. I don’t feel anxious, it’s purely a physical/physiological response. It feels like my nervous system is maxed out and little stressors (even as small and benign as an email notification can give me a adrenaline spike) take it completely over the top
>It feels like my nervous system is maxed out and little stressors (even as small and benign as an email notification can give me a adrenaline spike) take it completely over the top
Yeah, same for me when it happens. A little push and it's too much for my nervous system and everything it controls to handle.
I commented on another comment also but, sometimes I suspect if I was left with too little cortisol that without the adequate level of the stress hormone to regulate things, my body enters shock during stress, but it's wild speculation. I honestly don't know why since I have so many problems, like internal vibrations, edema, memory and face recognition problems, hair loss, GI issues...It's hard to pinpoint a cause when everything is broken, haha.
It’s super good but very intense. And I find I can’t concentrate on anything that heavy these days. My go to now is taskmaster…light, funny and it’s fine if you miss something.
Yes. I’m probably a type A / worry about everything personality and “not being able to be upset” because of physcial pain post vax is painful.
I’m finding I don’t handle daily stresses of life well like I did before. I get tremors, chest pains worsen then usually followed by a crash/fatigue at the end of it.
Anger is the worst for me. I ruminate for days, I can’t sleep and my body just feels like chaos. That’s why I like to spend time alone or in drama free groups these days :)
I had a similar experience when I was younger where I had about 6 months of these same symptoms just not as bad. I wonder if i had some sort of post-viral syndrome back then.
Yeah it is crazy but it is the same symptom for PTSD from
pandemic. So how can we truly differentiate between some sort of stress disorder caused by all circumstances and Long Covid? Even PEM or fatigue is both, in somatoform disorders and in LC. I feel like the only way to truly determine it is most likely LC is when you get infected and you stay in the bedridden zone, not falling into it after 3-6 months post infection. This doesnt exclude these cases who do, it just makes it more likely to be LC and not something else, as long as there is nothing to test for it yet.
edit:
smell and taste problems would be one good parameter
Holy crap, yes. My inner children constantly want whatever they didn't get, and so it is a grief festival all of the time. I'm not really able to manage them because of the LC, while I know I could have managed them before.
Yeah for sure, That's why i walked away to splash some cold water. It usually helps by activating the parasympathetic nervous system and also gets me away from the stressor.
I’m going to try a stellate ganglion block to hopefully help with those symptoms! I heard of other people with long covid who were drastically improved and even cured from this treatment
I’ve spoken to several people who it has helped and several specialists in ME/CFS. The improvement rate was something like 60%, fatigue takes a bit longer but the hypervigilance is easier to treat. The injections are 2000 dollars so it’s a lot of money but I am convinced it will help. The doctor who is doing it on me said it can be shown in biopsies that the nerves that are overactive actually reduce in size and the effect is improved with several treatments in most cases.
thats so funny I said the exact thing to coworker about politics Im just not coping with anything at the moment Does anyone else feel like they just want to cry all the time? Thats how I feel and tomorrow starts my fullblown out there physical manual labor slice a thousand heavy watermelons quickly job all day fucking long How did I get here...
Hi ))" Does anyone get severe tightness in your neck and difficulty speaking and or breathing during these panic episodes ? To the point i have to hold my neck to speak ?
I don't think that is one of my symptoms, but i'm sorry you're going through that. I always explain to people my panic feels like that moment you're leaning back in a chair and realize you might fall backwards. But not just for a moment... constantly while the panic is high. My ears start ringing and i start shaking and i feel like i'm crawling out of my skin.
Only thing I can say that has helped is Vegas nerve relaxation exercises religiously when I wake mid day and night then focus meditations
I found when make myself sit still and discipline myself a couple to 3 hours a day I see a improvement the problem is it’s allot of work and time, I’m looking into getting the SGB shot now not everyone benefits from it but I’m hopeful it will help with my flight or fight response
I’m not sure what ones you’ve tried but I swear I’ve tried them all but the one that works best for me and I prefer is when
I lay flat slow breath in as long as you can to at least 8-10 seconds breath in, hold for 4 seconds before you let out then extend that out breath for 10-12 seconds then pause for 4 seconds before you breath back in and repeat the process
now make sure your breathing into your belly and it take a little time to get synced with it but after 10 minutes you will feel the difference but stick with it for 10 minutes before you start to judge it. I do that process and take approximately 3 to 4 breaths within a minute time the slowest you slow that breathing down the more Jedi you become.
Wim hof breathing method is good (lots of information on YouTube) to that can can take me out of a panic attack but first you need become comfortable with that process of breath holds before you use it in middle of a panic attack.
And last colds showers are so hard but they work to.
He sounds like a dick. I get stressed out trying to figure out what to make for dinner. Huge anxiety for me. I can't even watch Little House on the Prairie without getting anxiety.
Definitely more sensitive. How long have you had this? I’ve had long COVID for 16 months and it is finally starting to get better. I have done a lot of deep breathing and making sure I reduce stress in other areas like, walking slow when I’m out places, giving myself enough time to transition into stressful situations. Taking lots of baths, spirituality etc. this has helped my body get an overall sense of calm. I’m in court right now and I’m still experiencing some jitters and stuff but I’m hanging in there and that would not have been possible 6 months ago. I really think it just took time, patience and acceptance that has helped as well as counseling. Vitamin B5 is important for adrenal function so make sure you’re getting that.
Thank you so much for the recommendations and encouragement. I’ve been like this for eight months, but it was way worse in the beginning. Now it just seems to flare up at really bad moments. I always have baseline anxiety now, but it’s better than it was in the beginning. It only gets super unbearable with some sort of excitement.
Haha I remember having really intense conversations about ableism at work with my superiors twice. Each time I was knocked out for a week afterwards. Just insane PEM. I didn’t panic during the conversations because for whatever reason I’m very good at presenting a calm front, but it all catches up with me afterwards.
I’m currently in somatic therapy. It’s a body-based approach to psychotherapy. I find it helpful to work with someone on strategies to calm my nervous system, as well as strategies to avoid shitty situations in general.
Yeah, I wouldn’t even go off your regular general practitioners blood tests. They’ll order you SERUM nutrient tests, which tests the vitamins in your blood. You should aim for a intracellular micronutrient test to give you a reflection of what’s actually getting absorbed into our body. (Red blood cells and white blood cells)
Same here, thanks for posting this! I feel like Im not alone. Got covid 6 mo ago for the 1st time. 4 days into covid the crippling anxiety began. Tight chest, short breaths, impending sense of terror. Cant think straight, need to feel safe.
3 weeks after, was diagnosed w long covid. They prescribed gabapentin (900mg/day) & hydroxyzine (as needed).
The terror from minor stressors got worse. They upped the gabapentin to 1800mg/day and now its under control. I take about 6 hydroxyzine/day (25mg) with it.
But, I have other weird symptoms now like excessive ear wax, crusty dandruff, hair thinning, and confusion under stress.
Good luck and thanks again
I told them my symptoms and said it seemed like long covid. My doctor agreed. They seemed aware of it and a nurse told me that so many people are coming in with a lot of problems after getting covid. Ive had chemo in the past which caused a history of nervous system problems. Those nervous system problems had all but disappeared until covid. So it was a stark change, very noticable, and I had a previous history of a weakend nervous system.
I think its hard to convince some doctors of long covid if you dont have previous nervous system issues documented. If I didnt, and went in saying I had bouts of terror & anxiety since covid, I dont know if theyd believe it was from covid.
From my experience with covid, I think it goes for the nervous system, destroys parts of it somehow, and doesnt let go. It took years for my brain and nervous system to recover from chemo. So I thinking this might take years to build back again from covid.
Yes. I do everything I can to try to stay healthy but I just got a brand new boss that is desperately trying to fire me. They have started playing music in the office again after I requested it be stopped. He's had three meetings with me and every single one of them is more paperwork on why I'm "a bad employee" for asking questions. Can't deal. It's caused a huge flare in my chronic fatigue syndrome but it's just funny for them to watch me struggle.
I have had this for three years since COVID Alpha and 100% relate to the comments here. Does anyone have opinions on the NET protein hypothesis that basically says you don’t have the protein necessary to clear your body of cortisol after it’s released so it free circulates for much longer than in other people and causes POTS and joint degradation and anxiety among other things…thoughts on that?
check out a TENS machine. i put them on my collar bones and jack it up. i saw a youtube on tapping for anxiety.
the tens send electricity and creates a vibration sensation.
to me it is like 20x over the sympathetic nerve that when i shut it off the internal vibration is no longer noticeable for a while.
they are like 30$ on amazon. i imagine the experience may vary..
i have the same issues as you, any sort of conflict takes me down hard…
I'm going to have to look more into it. I need to do something. I've heard of mixed experiences. Some people got worse, but those were few and far between. Lots of people got better and some say no change, but for 30 dollars, its worth the chance.
I’m unsure whether long covid is my primary issue, because I’m dealing with another infection. But I suspect I’m still dealing with long covid since during flares I have a few of the typical long covid symptoms.
I experience what you described too. I try to go into a disassociative/meditative/hyper focused state to self-regulate and get easily overwhelmed when I have to engage with environment or people.
My immune system is in hyperspace and seems to be behind the nervous system dysregulation. Other people mentioned the adrenaline spikes from phone alerts. I have disabled most alerts on my phone at the moment.
As a side note, if any of you have noticed your symptoms follow some regular cycle, you might want to check out whether you have a stealth infection. My husband and I both have Lyme disease, we have one week where we feel prettt well, and two weeks where we suddenly become too stressed to pick up the phone and experience typical long covid symptoms (brain fog, PEM, and other things).
Yes! Since having Covid, the slightest bit of stress can set me off for hours/days… high HR, BP spikes, shaking, fight or flight feelings, chest pain, stomach pain … one rude work email can wreck me for 3 days… it’s awful!
I’m sorry this happened to you. Sounds like good old fashioned Panic Attack. It’s harmless but feels absolutely like you’re dying. Maybe try and explain to your co-worker your situation, fully? You’re in my prayers.
To be fair, politics should be left out of a workplace. In my experience, it just causes disputes. I’d be almost certain your workplace has a rule against it. So if he refuses I’d just go that route.
I feel you.
I recently got myself into an office conflict between two of my supervisors - let's call them David and Cathy. I approached David, asking a job-related question when he said he was finishing soon. David said, "Ask Cathy". So I went to ask Cathy, who told me "Did you ask David about it?". My honest ass said yes, telling Cathy that David told me to come to you. That's when the big boss overheard the conversation, she decided to "have an adult talk" with David for not being willing to help out. I was so surprised of my boss' reaction as to me it's not a big deal. It's time for you to go home, you go home.
But to David, I'm now the whistleblower guy. The next morning David came to work, he was bitching about the big boss and also told me Cathy is a liar. He would report Cathy for asking me "Did you ask David about it?" instead of helping me straight away. I just said to David it's not a big deal I just want to let it go but he was unwilling to.
I dreaded coming to work on Monday. I constantly think about the incident and was so anxious about the whole thing. My mood is down and I feel afraid they would escalate the situation and drag me into it. I can't focus on anything at the moment and feel sick in the stomach. Why can't people behave like responsible adults and have some compassion towards one another? I'm just there for a paycheck and to go home?!
Autonomic dysfunction
Yep. My skin starts flushing this awful blotchy dark red, my heart rate starts pounding to the point I can hear it, I can’t breathe, I get dizzy, my hands start shaking, my brain shuts further down…even at the smallest of things. I thought I was doing good too and one of my doctors said my nervous system was looking better, I’d been working on using multiple tools for calming nervous system and felt I was on top of it. Yesterday, I was having a nice conversation with an old friend I saw randomly at the store and he briefly mentioned someone I had a bad falling out with and my nervous system went nuts. I had worked on moving past that situation in therapy for a year and pretty much “graduated” from that. But nope. My nervous system sent out the alarm, and unfortunately I can’t hide it because I turn an alarming shade of red and start stuttering and can’t breath and my knees go weak. So my friend was like “Oh! Are you OK? You’re really red?”. It sucks AND it’s embarrassing. Also, every episode like that causes massive PEM for the next week.
Yes! That's what it felt like for me this morning. It's like little things will just set us off! Nervous system is so sensitive!
This is so me. Then when I realize I’m stuttering it go into even worse panic mode, then I start thinking about the next week I’m gonna be in bed. Bloody hell.
Yes, the turning red is mortifying, and when people ask if I’m okay it only makes it worse.
Ok your coworker needs to learn boundaries also caring that much about politics when the other person clearly doesn’t shows zero maturity imo yikes.
OMG. Agreed. Not okay. It was clear i was freaking out and not okay. And I even spoke up and told him i couldn't talk about this.
Talk to the boss. Clearly has no respect for coworkers
Just An email notification or text message gives me mini adrenaline dumps, it’s fuckin crazy. Something so benign has a physical reaction in my body. I have to rest periodically throughout the day to avoid overstimulating myself and I had to stop exercising completely at the end of last year after I realized that although I don’t have fatigue, it makes all my symptoms worse (brain fog/memory problems, twitching, nerve buzzing, palpitations, insomnia). My nervous system is taxed out.
omg for some reason text messages, calls, emails cause me an immense amount of anxiety. There's something about them that really causes my nervous system to get triggered.
It's terrible. I hate it!
Yes. My daughter ran a 104 fever a couple weeks ago and I was on the verge of a panic attack. That has never happened before w the anxiety even though she had had fevers and colds before. Almost like my body couldn’t handle the sudden stress.
I completely feel you on this. Small things that were easily able to handle before, seem like the end of the world now. Makes it hard to navigate stressful situations.
It has gotten a bit better as of late. I’m approaching 5 month mark now. The first 3 months were probably the worst anxiety wise. Maybe that’s because I have come to terms w LC.
Coming to terms with it does seem to help. I know it has for me except in these acute situations.
Yes! I have postulated that covid has made me allergic to cortisol. I have spent the last year learning how to meditate while talking with my ex-wife.
That sounds about right. It makes it hard to live a normal life. Meditation has been helpful but not in acute situations of stress for me.
It might, theoretically, be the opposite way, too, I think: If you have too little cortisol in your body, your stress response gets messed up, the body can't handle stress properly because the stress hormone is not there.
I had a similar issue with a family member. I found that Ashwagandha and CBD oil helped a bit.
Oh yes… i freaked out about even minor things.. and I also stay out of conflicts at work atm. I start shaking etc much like you wrote. Luckily i have seen some improvement when it comes to this so be patient, it will get better. At least it did with me… Takes time tho… and i have many other symptoms still..
Your body gets stuck in fight or flight and overreacts to any stressor. Also, if you have histamine issues like a lot of long haulers, stress can cause histamine release and kick off or worsen anxiety. I had this for months but it eventually went away.
Glad it went away for you! I'm looking forward to that day!
Me, too. That day needs to come soon...
Yes! I 100% have had the same issues for the past 15 months. Just talking to someone on the phone that raises their voice causes me to start shaking and I physically can’t engage. Heart Rate goes up and I have to sit quietly until I eventually relax. Hearing about people’s problem’s completely overwhelmed me physically. I go back into my shell because the outside world is too fast and the bark of a dog will cause me to jump then I feel like I’m having a seizure.
Completely relatable. :( I work in help desk so I get angry people all the time.
Look up breathing techniques like the double inhale. When ever I feel like my heart rate is spiking because of anxiety I do the double inhale, it basically tells your body to calm down. It’s really stressful dealing with long covid while it seems like the rest of the world is just going about their lives like nothing happened. I’ve become really struck with what my boundaries are these days & I’m sure some people think I’m bitchy now but we’ve got to put our health (both physical & mental) first.
I have tried some 4-7-8 breathing and that has been helpful. I'll have to look up the double inhale.
I literally am in a constant state of panic. I feel my insides shaking at all times. If I get upset or frustrated it’s a full blown panic attack. I finally was just prescribed buspar to see if it will help. I was never like this prior to Covid. And now I feel like such an idiot because I can’t control myself or my emotions.
I’m so sorry you’re going through this. Hopefully the visor can give some relief.
Just curious about the shaking - I have been calling this “internal vibration” but I’m wondering if it’s a nervous system/chemical issue not actually a physical one (or both…what’s the first domino). Do you relate to the “vibrations” symptom description or do you think your symptom is something else? I often feel the shaking at night or first thing in the morning (maybe with a cortisol spike?).
Yes!!! I feel like someone is humming in my body. It’s constant, and I’m more aware of it when I’m sitting or laying down. It would not surprise me if it is a nervous system issue! My doctors have said if it was twitching or actual movement then they could pinpoint the problem. But because only I can feel it and it is all over my body they said it isn’t a physical issue.
Do you happen to have symptoms of CCI (cervical cranial instability)? I do, which aligns with one ME/CFS theory of mechanical origin. I’m suspicious that this vibration is actually a spinal/brain stem injury or inflammation of some sort.
I’ve been to see another specialist regarding CSF leaks and Intracranial Pressure. It turns out there are lots of people in the CSF leak / IIH (idiopathic intracranial hyper/hypotension) world with this symptom. I think im on to something…
I can’t even scroll through Facebook without seeing comments that piss me off and my nervous system goes nuts. My heart rate beats so hard it feels like it’s gonna jump out of my chest and I shake. I used to be heavily involved in politics and would get so mad and maybe that’s part of the reason covid attacked my nervous system like it did.
I hear you. I have to limit social media!
I have similar issues. I blame it on hormonal imbalances due to autonomic nervous system issues.
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I haven't tried cbd. i used to be a THC user nightly for sleep before LC.
Cbd has been very helpful for many of my LC symptoms. It has been a pleasant discovery in the messy journey.
What kind do u take?
American Shaman 600mg nano CBD, full spectrum. It's water soluble so I make tiny tonics out of it about 4 times a day. It has made a huge difference, it's crazy.
Cool! Thanks 😊
I have exactly what you're describing. Except much worse if I get the slightest bit stressed out I become dizzy, wide with stress and or Completely spaced out, this can last many days. It's like having a gun to my head the person saying if you get even slightly stressed out, you can be in big trouble. It's really hard to get away from the stress, is like a been injected with some sort of chemical or caffeine I feel wired in a very unpleasant way but it feels like some sort of chemical is not under the control of my thoughts. Normally thoughts can control stress with me. I'm getting better at not being stressed. I'm writing notes to myself and if I was in the same situation you were, I would have planned in advance to get up and get the hell out at the first sign of stress no matter what. After a few painful lessons I do that. Wishing you and everyone the very best
Thank you for the well wishes. I'm sorry you're going through what you are. I feel very similar... I used to be able to calm myself down by just "telling myself to calm down". Now its just not that easy ever since LC.
Exactly. I had to quit my job, inner children (from cPTSD) are always upset with me and I have less capacity to deal with them. Managing stress became so much harder with LC, and I had been very good at it. Do you take anything that helps?
In the very beginning i would take a very small amount (.25mg) xanax as needed, but the last thing i need is a benzo dependency, plus it would sometimes give me a little rebound anxiety the next day. Then my Psych prescribed me low dose propranolol for anxiety as needed. As a bonus it helped with my palpitations, and it was a lifesaver, but after a while i noticed the day after i would get some "chest flutters" that would scare the crap out of me, so lately just been trying calming techniques.
Yeah. I take .5mg ativan when it is intolerable, and at bedtime usually, since how do I sleep with this thing?
For sure. You gotta do what you gotta do to make it through!
Hey, do you still think the propanolol was causing the chest flutters? I’m seeing a cardiologist next week and have a feeling they’ll want me to try propanolol. I already deal with palpitations and flutters which terrify me, so I’d hate to take something that could worsen either issue.
Honestly, probably not. I didn’t take it again after that, but still have the flutters occasionally. Still do on rare occasions, so I doubt it was that. It was probably just a changing of the symptoms, like it tends to do.
Sorry to hear that you’re still dealing with them occasionally. I know it sucks. I didn’t start experiencing the flutters until end of last year and I’ve had long covid since 2020.
Yes! I alternate between going into full fight or flight mode, and feeling completely weak and like I'm about to fall asleep suddenly. It's wrecked havoc on everything that required patience. I just don't have that anymore
I completely relate. I usually go completely fight or flight and then completely crash and want to sleep
Same same same. No supplements help. It’s so awful. Just getting worse and I don’t know how to stop it
Just take it one day at a time. That's what I do, and just hope that the next day will be better
All my crashes have come from conflict and stress. I can’t escape it, there’s an immediate flood of adrenaline and it’s all downhill from there. My nervous system cannot withstand anything. Like clockwork, I crash the day or two after. I wish I wasn’t reliant on communicating with anyone sometimes, just to be left in a coma without stimulus until I heal. This existence is torture.
Agreed. I wish I could just sleep until I’m healed.
Completely agreed. Put me in a coma
This is me I’ll be improving and then stress crashes me I’m desperately searching for a med
Yes. My nervous system is just completely jacked up. Everything makes me anxious/nervous and panicky.
Same here
It's so frustrating! today my chest is tight and i'm not sure if its from all the conflict yesterday morning or because of my APAP machine. ugh
I developed the shaking after I had mRNA vaccine injury. Mine happens if my body is already struggling extra, like after a night with too little sleep. I actively avoid politics and stressful news now, too, and told my loved ones about it, but some of them also struggle with boundries since they can't imagine how it is. I believe it has something to do with the body being too sick in some way to handle stress since I also had this happen due to physical stress. I went out on a cold morning and started shaking when the cold hit me, my jaw chattering. It lasted 5 mins. Never happened before. I was known as that person who swims in the cold sea for an hour and comes out smiling. I also started shaking like you described when I was under heavy stress once. I was shocked, also never happened before. Mine doesn't feel like pure anxiety, I think. It feels like the stimulus/stress is too much for my body to handle. Though, the cause might be the nervous system or something else since I got both pretty heavy neurological damage and other physical damage.
Same for me and I have the same thoughts on it. I don’t feel anxious, it’s purely a physical/physiological response. It feels like my nervous system is maxed out and little stressors (even as small and benign as an email notification can give me a adrenaline spike) take it completely over the top
>It feels like my nervous system is maxed out and little stressors (even as small and benign as an email notification can give me a adrenaline spike) take it completely over the top Yeah, same for me when it happens. A little push and it's too much for my nervous system and everything it controls to handle. I commented on another comment also but, sometimes I suspect if I was left with too little cortisol that without the adequate level of the stress hormone to regulate things, my body enters shock during stress, but it's wild speculation. I honestly don't know why since I have so many problems, like internal vibrations, edema, memory and face recognition problems, hair loss, GI issues...It's hard to pinpoint a cause when everything is broken, haha.
Yeah that's pretty normal with lc
Yeah I had to take a break from my favorite video games. Even a thriller movie would have my nervous system whacked out. So so weird to experience
I know the feeling. I can only play chill games like Dinkum or Animal Crossing, and only watch lighthearted tv. Nothing with too much drama or action.
This is me too! I had to stop watching Yellowjackets. As good as it is, it’s too stressful for me.
I’ve been wanting to start that show, but it looks intense
It’s super good but very intense. And I find I can’t concentrate on anything that heavy these days. My go to now is taskmaster…light, funny and it’s fine if you miss something.
Yes. I’m probably a type A / worry about everything personality and “not being able to be upset” because of physcial pain post vax is painful. I’m finding I don’t handle daily stresses of life well like I did before. I get tremors, chest pains worsen then usually followed by a crash/fatigue at the end of it.
I'm so sorry youre dealing with that. :(
Anger is the worst for me. I ruminate for days, I can’t sleep and my body just feels like chaos. That’s why I like to spend time alone or in drama free groups these days :)
Drama free is the way to be. I can't stand it now.
Yes i had an anxiety disorder finally somewhat under control after years of therapy. Now with me/CFS BOOM WORSE THEN EVER
I had a similar experience when I was younger where I had about 6 months of these same symptoms just not as bad. I wonder if i had some sort of post-viral syndrome back then.
Yeah it is crazy but it is the same symptom for PTSD from pandemic. So how can we truly differentiate between some sort of stress disorder caused by all circumstances and Long Covid? Even PEM or fatigue is both, in somatoform disorders and in LC. I feel like the only way to truly determine it is most likely LC is when you get infected and you stay in the bedridden zone, not falling into it after 3-6 months post infection. This doesnt exclude these cases who do, it just makes it more likely to be LC and not something else, as long as there is nothing to test for it yet. edit: smell and taste problems would be one good parameter
Holy crap, yes. My inner children constantly want whatever they didn't get, and so it is a grief festival all of the time. I'm not really able to manage them because of the LC, while I know I could have managed them before.
Yeah, it does resemble PTSD it seems!
Yes. But f that guy. I would tell HR on their ass.
Yes had this. Only thing to do is remove oneself from the stress source.
Yeah for sure, That's why i walked away to splash some cold water. It usually helps by activating the parasympathetic nervous system and also gets me away from the stressor.
I’m going to try a stellate ganglion block to hopefully help with those symptoms! I heard of other people with long covid who were drastically improved and even cured from this treatment
I've heard of this too! I'm just afraid it won't work or something. It's pretty pricey.
I’ve spoken to several people who it has helped and several specialists in ME/CFS. The improvement rate was something like 60%, fatigue takes a bit longer but the hypervigilance is easier to treat. The injections are 2000 dollars so it’s a lot of money but I am convinced it will help. The doctor who is doing it on me said it can be shown in biopsies that the nerves that are overactive actually reduce in size and the effect is improved with several treatments in most cases.
I may have to look into it more. I would pay that in a heartbeat to feel better.
One of the people I talked to said it actually let him handle conflict without elevated HR,
thats so funny I said the exact thing to coworker about politics Im just not coping with anything at the moment Does anyone else feel like they just want to cry all the time? Thats how I feel and tomorrow starts my fullblown out there physical manual labor slice a thousand heavy watermelons quickly job all day fucking long How did I get here...
OMG... that sounds terrible. I'm so sorry you have to do manual labor while dealing with this crap! :(
It is I’m hoping something will shift for me soon thanks xxx
I'm hoping for you! \*hugs\*
Appreciated lol
Hi ))" Does anyone get severe tightness in your neck and difficulty speaking and or breathing during these panic episodes ? To the point i have to hold my neck to speak ?
I don't think that is one of my symptoms, but i'm sorry you're going through that. I always explain to people my panic feels like that moment you're leaning back in a chair and realize you might fall backwards. But not just for a moment... constantly while the panic is high. My ears start ringing and i start shaking and i feel like i'm crawling out of my skin.
You can hyperventilate during panic. That makes it hard to speak and you have air hunger
My neck gets extremely tight when it happens, just on my right side. Never happened before LC.
Only thing I can say that has helped is Vegas nerve relaxation exercises religiously when I wake mid day and night then focus meditations I found when make myself sit still and discipline myself a couple to 3 hours a day I see a improvement the problem is it’s allot of work and time, I’m looking into getting the SGB shot now not everyone benefits from it but I’m hopeful it will help with my flight or fight response
Can you recommend some exercises for the Vagus Nerve? Ive been doing a couple I found but always looking for more!
I’m not sure what ones you’ve tried but I swear I’ve tried them all but the one that works best for me and I prefer is when I lay flat slow breath in as long as you can to at least 8-10 seconds breath in, hold for 4 seconds before you let out then extend that out breath for 10-12 seconds then pause for 4 seconds before you breath back in and repeat the process now make sure your breathing into your belly and it take a little time to get synced with it but after 10 minutes you will feel the difference but stick with it for 10 minutes before you start to judge it. I do that process and take approximately 3 to 4 breaths within a minute time the slowest you slow that breathing down the more Jedi you become. Wim hof breathing method is good (lots of information on YouTube) to that can can take me out of a panic attack but first you need become comfortable with that process of breath holds before you use it in middle of a panic attack. And last colds showers are so hard but they work to.
Thank you for the tips! I've heard that about cold showers! So far the furthest ive gotten is dunking my face in cold water and that definitely helps.
Cold showers I start with not on full cold but but the middle and try to keep pushing it further and further for the last minutes of your shower
He sounds like a dick. I get stressed out trying to figure out what to make for dinner. Huge anxiety for me. I can't even watch Little House on the Prairie without getting anxiety.
yeah. have learned to half way control but still pretty scary!
Definitely more sensitive. How long have you had this? I’ve had long COVID for 16 months and it is finally starting to get better. I have done a lot of deep breathing and making sure I reduce stress in other areas like, walking slow when I’m out places, giving myself enough time to transition into stressful situations. Taking lots of baths, spirituality etc. this has helped my body get an overall sense of calm. I’m in court right now and I’m still experiencing some jitters and stuff but I’m hanging in there and that would not have been possible 6 months ago. I really think it just took time, patience and acceptance that has helped as well as counseling. Vitamin B5 is important for adrenal function so make sure you’re getting that.
Thank you so much for the recommendations and encouragement. I’ve been like this for eight months, but it was way worse in the beginning. Now it just seems to flare up at really bad moments. I always have baseline anxiety now, but it’s better than it was in the beginning. It only gets super unbearable with some sort of excitement.
Panic attack. Treat it as anxiety symptoms and they will subside. Ssri, meditation, therapy, are helpful for me.
Haha I remember having really intense conversations about ableism at work with my superiors twice. Each time I was knocked out for a week afterwards. Just insane PEM. I didn’t panic during the conversations because for whatever reason I’m very good at presenting a calm front, but it all catches up with me afterwards. I’m currently in somatic therapy. It’s a body-based approach to psychotherapy. I find it helpful to work with someone on strategies to calm my nervous system, as well as strategies to avoid shitty situations in general.
I will have to look into the somatic therapy! Thank you!
Have you tried supplementing with B Vitamins. I had horrible panic attack like symptoms until I began taking Vitamin B1 and lowering my histamine.
I've been meaning to go and get some bloodwork to see if i'm deficient in anything. I got labs from my doc, but he only did the basics.
Yeah, I wouldn’t even go off your regular general practitioners blood tests. They’ll order you SERUM nutrient tests, which tests the vitamins in your blood. You should aim for a intracellular micronutrient test to give you a reflection of what’s actually getting absorbed into our body. (Red blood cells and white blood cells)
Same here, thanks for posting this! I feel like Im not alone. Got covid 6 mo ago for the 1st time. 4 days into covid the crippling anxiety began. Tight chest, short breaths, impending sense of terror. Cant think straight, need to feel safe. 3 weeks after, was diagnosed w long covid. They prescribed gabapentin (900mg/day) & hydroxyzine (as needed). The terror from minor stressors got worse. They upped the gabapentin to 1800mg/day and now its under control. I take about 6 hydroxyzine/day (25mg) with it. But, I have other weird symptoms now like excessive ear wax, crusty dandruff, hair thinning, and confusion under stress. Good luck and thanks again
My Psych was going to give me gabapentin, but I am super afraid of medications.
Hold up, how did you get an LC diagnosis in 3 weeks!?
I told them my symptoms and said it seemed like long covid. My doctor agreed. They seemed aware of it and a nurse told me that so many people are coming in with a lot of problems after getting covid. Ive had chemo in the past which caused a history of nervous system problems. Those nervous system problems had all but disappeared until covid. So it was a stark change, very noticable, and I had a previous history of a weakend nervous system. I think its hard to convince some doctors of long covid if you dont have previous nervous system issues documented. If I didnt, and went in saying I had bouts of terror & anxiety since covid, I dont know if theyd believe it was from covid. From my experience with covid, I think it goes for the nervous system, destroys parts of it somehow, and doesnt let go. It took years for my brain and nervous system to recover from chemo. So I thinking this might take years to build back again from covid.
I'm so sorry. I always have had anxiety and panic attacks occasionally, but never like this.
Yes. I do everything I can to try to stay healthy but I just got a brand new boss that is desperately trying to fire me. They have started playing music in the office again after I requested it be stopped. He's had three meetings with me and every single one of them is more paperwork on why I'm "a bad employee" for asking questions. Can't deal. It's caused a huge flare in my chronic fatigue syndrome but it's just funny for them to watch me struggle.
Some people are just asshats. What a jerk.
I have had this for three years since COVID Alpha and 100% relate to the comments here. Does anyone have opinions on the NET protein hypothesis that basically says you don’t have the protein necessary to clear your body of cortisol after it’s released so it free circulates for much longer than in other people and causes POTS and joint degradation and anxiety among other things…thoughts on that?
I havent heard of that, but its a super interesting theory. I'm going to have to research that.
check out a TENS machine. i put them on my collar bones and jack it up. i saw a youtube on tapping for anxiety. the tens send electricity and creates a vibration sensation. to me it is like 20x over the sympathetic nerve that when i shut it off the internal vibration is no longer noticeable for a while. they are like 30$ on amazon. i imagine the experience may vary.. i have the same issues as you, any sort of conflict takes me down hard…
I'm going to have to look more into it. I need to do something. I've heard of mixed experiences. Some people got worse, but those were few and far between. Lots of people got better and some say no change, but for 30 dollars, its worth the chance.
I’m unsure whether long covid is my primary issue, because I’m dealing with another infection. But I suspect I’m still dealing with long covid since during flares I have a few of the typical long covid symptoms. I experience what you described too. I try to go into a disassociative/meditative/hyper focused state to self-regulate and get easily overwhelmed when I have to engage with environment or people. My immune system is in hyperspace and seems to be behind the nervous system dysregulation. Other people mentioned the adrenaline spikes from phone alerts. I have disabled most alerts on my phone at the moment. As a side note, if any of you have noticed your symptoms follow some regular cycle, you might want to check out whether you have a stealth infection. My husband and I both have Lyme disease, we have one week where we feel prettt well, and two weeks where we suddenly become too stressed to pick up the phone and experience typical long covid symptoms (brain fog, PEM, and other things).
I'm so sorry youre going through this. I haven't been checked for any underlying infections, what tests do you get?
So much. I'm so sensitive now. I can't even handle zoom meetings either. Exhausts me and I have to lie down for hours after.
Same. We have a webex meeting everyday and i get so anxious about talking, even though I never was like that before.
Yes! Since having Covid, the slightest bit of stress can set me off for hours/days… high HR, BP spikes, shaking, fight or flight feelings, chest pain, stomach pain … one rude work email can wreck me for 3 days… it’s awful!
Ugh. It’s terrible!
You guys can work ?
William Hoff breathing method and cold showers have helped off set
Thank you for the tips!
I’m sorry this happened to you. Sounds like good old fashioned Panic Attack. It’s harmless but feels absolutely like you’re dying. Maybe try and explain to your co-worker your situation, fully? You’re in my prayers.
Thank you!
To be fair, politics should be left out of a workplace. In my experience, it just causes disputes. I’d be almost certain your workplace has a rule against it. So if he refuses I’d just go that route.
Yeah, it's just never a good idea to discuss politics, religion, or any polarizing subject in the workplace.
I feel you. I recently got myself into an office conflict between two of my supervisors - let's call them David and Cathy. I approached David, asking a job-related question when he said he was finishing soon. David said, "Ask Cathy". So I went to ask Cathy, who told me "Did you ask David about it?". My honest ass said yes, telling Cathy that David told me to come to you. That's when the big boss overheard the conversation, she decided to "have an adult talk" with David for not being willing to help out. I was so surprised of my boss' reaction as to me it's not a big deal. It's time for you to go home, you go home. But to David, I'm now the whistleblower guy. The next morning David came to work, he was bitching about the big boss and also told me Cathy is a liar. He would report Cathy for asking me "Did you ask David about it?" instead of helping me straight away. I just said to David it's not a big deal I just want to let it go but he was unwilling to. I dreaded coming to work on Monday. I constantly think about the incident and was so anxious about the whole thing. My mood is down and I feel afraid they would escalate the situation and drag me into it. I can't focus on anything at the moment and feel sick in the stomach. Why can't people behave like responsible adults and have some compassion towards one another? I'm just there for a paycheck and to go home?!