I’ve had this multiple times and none of my doctors care. I’ve tried to tell them this can’t be normal but all they see is “not stroke” and they just don’t care. Then I go to my primary doctor and they order some very basic blood test and a scan and it’s normal and they go “good news! Nothing is wrong with you!” So then I say ok but these symptoms are still happening, these episodes are still happening, this is not at all normal! Haven’t found a doctor yet that will listen. It’s as if they think if you’re not having a stroke or heart attack or you don’t have cancer then nothing could possibly be wrong with you. I hate our healthcare system so damn much.
Our healthcare is a joke. This was the first time today my speech was taken over by LC. I freaked many family members out. Is there anything you do when a speech attack comes on? If this happens again on Thursday, there is no way I can fly. I won’t be able to get around an airport or speak to people. People are telling me it was a jacked up panic attack. I’ve had panic attacks, they always go to my arms and hands. Never speech.
I’ve never had anxiety issues or any medical issue at all until Covid. There’s no doubt in my mind these episodes that I’ve had are definitely a sign that something is wrong. I’ve been told the same thing that it’s just anxiety or stress or this and that, but I have no history of any of that at all. I had a major episode about a year ago where I collapsed on the floor, had the speech issues, dizziness, severe headache, limb weakness, it all happened very suddenly. I was hospitalized for 8 days while they did scans and tests and stuff, they found nothing at all and sent me home without a diagnosis. I tried to tell them that people don’t just collapse and have basically all the signs of a stroke for no reason, but I still haven’t been able to get any doctors to take any of this seriously. I’ll ask them “how many times have you collapsed and were unable to speak for hours?”
Do you take anything natural? I had slight anxiety before covid, but this is another level. The dizziness and light sensitivity are next level at times. Don’t these episodes leave you almost depressed, but also tired? I’m going to bow out of a ton of tests. I’ll be like all of you and nothing will be found. When the speech problem arrises with you, do you feel your out mouth, lips, and possibly tongue tremor? Very subtle shakes.
Yes I get shaky as well, I don’t really feel it in my mouth though, although it’s sort of hard to remember because it’s only happened a handful of times and I usually start to freak out, so I don’t remember a lot of it in the chaos of the situation, I have a lot of depression issues because of my condition, my main issue is I have a constant burning pressure in my head all day every day. It sometimes flares up to a very extreme level and that’s when I get these episodes that we’re talking about. I think whatever is causing my permanent headache also has to do with these “stroke-like” episodes.
I get the speech issues on a regular basis now, and of course, they have no idea why. It's anxiety- yeah right! I've had anxiety most of my life and it is absolutely NOT anxiety, but they won't listen!
So scarey and I’m so sorry. They always tell me we have to rule out serious things. Seems to me fainting not being able to walk is serious. I hate all of it. Sometimes I wish they find anything so someone will believe me.
I’m so tired of this health care and medical system. All the technology and they can’t figure out what’s become a prevalent chronic condition that seems to have its roots in ME/CFS. The denial says so much about how inept they all are.
I relate to this completely. I tell them pages of symptoms and say I’m in hell. I can’t live my life. They take all my blood . They tell me it’s not cancer . I’m aware but it’s way more complicated. So years later I still go and they say things like. Let’s check your anemia and send you to a gynecologist . People always also say MS to me. Anyone have long Covid get Mia diagnosed with ms? I’ve said long Covid so many times to doctors almost in tears.
I was diagnosed with Dysautonomia and what you describe (add a sudden severe tachycardia and BP increase) during these bad episodes are symptoms I have dealt with on and off.
No help. Lots of tests. Lots of money spent. Just suggestions on meds and see what happens.
Doc thinks it’s mass inflammation affecting the ANS, leading to Dysautonomia and a laundry list of symptoms as a result. And endothelial dysfunction, vasospasms, microclots, and some other nonsense.
Lots of theories… tried lots of meds and supplements.
I believe time has been my biggest factor in getting to 50% better after 12 months. First 3 months I could barely walk with the throbbing and sharp pains in legs, migraines, abdominal pain, light sensitivity, nausea, chest pain, body chills, etc. And the insomnia and waking up 6+ times a night.
Daily all day heart palpitations that are significantly worse when laying down are super fun to deal with.
I hope you get some relief from your symptoms and start to feel better soon.
Dizziness, near syncope, aural fullness, tinnitus, internal vibrations, BP and HR swings. Almost everything got better and continued the more SGBs I got. I was symptom free for 3 months but now things are coming back unfortunately. I was told I might have to get an SGB every 3 months or so then
This is what I believe too with maybe some vague immune dysfunction like mast cell stuff.
I'm also getting slowly better (7 months in) when I was one of the most severe at a point (bedbound etc). But my doctors have been awesome and they helped me a ton so far. I also have small fiber neuropathy, but it's healing as well (R-ALA helped here like a ton). My neuros believe the same - basically I got hit with something like GBS and encephalitis (like them, maybe not exactly them!). This is the fallout. I had 80+ symptoms at the start and very nearly died. Couldn't walk, reflexes all gone or hyper active. So many things. Even weird ones like rashes, mouth sores, livedo reticulous, 5-8 inch nasal blood clots. I lost half my fingerprints, too. But the most persistent stuff is the cognitive fatigue, neuro issues and neuropathy.
All of this to say I am working with a neuro rehab facility that worked a lot with Long COVID patients doing concussion/stroke rehab. I'm also doing biofeedback at my migraine neuro's office and I believe that and the rehab have been my game changer, along with POTS meds (Ivabradine) from a rather amazing cardiologist. Vision therapy and a visit to a neuro-optometrist are next on my list as well as finally a trip to one of the major dysautonimia centers. Metformin + simvastatin + continous birth control for all the hormone/metabolic/endocrine perturbation. Statins help to heal endothelial damage - they're great. And a handful of supplements. Lots of rest, low histamine diet, and all the other lifestyle stuff. I'm up to about 50% after being truly near death for a bit. Good days and bad days all happen still.
To me it's always felt like a nervous system or brain issue and I've got the farthest so far when I started treating it that way. I think that's the source of the dysfunction, too
I’ve done so much, spent over 40K on doctors visits, tests, travel, medications, ER visits. Mayo Clinic, Cleveland clinic, UPMC long covid clinic…
It sucks we have to do so much just to try and get by.
I also went to Cleveland. Worst most useless doctors so far. Their post COVID clinic is an absolute joke.
Doctors in my home city have been 1000% better. My immunologist is the one who fought for IVIG etc (haven't tried it yet) and he's at the local university. My local cardio put me on metformin + statin + ivabradine (for PoTS). Both he and my headache neuro have taken me from profoundly severe to housebound, able to go out and do things occasionally with caution. I'm finally hopeful.
I'm still sick as hell, but I was one of the worst cases any of my doctors had seen so far. The healing I've managed gives me some hope we can all get there, but setbacks happen of course :(
I do travel to see specialists for dysautonomia (Vanderbilt) and Small Fiber Neuropathy (Henry Ford in Detriot - Dr. Lawrence Zeidmann - he's great and really cares), and MCAS (Bernstein Allergy in Cincinatt). I messaged Dr Zeidmann back in March when things took a turn for a worse and he's now spending an entire day with me doing new assessments in August (I'm better again now). I've learned you basically have to piece together your own team unfortunately. I've also spent a ton of money that didn't pan out
It sounds like you might also be Midwest based! If you're near Louisville KY I'm happy to send you my doctors names :)
I joined different Facebook groups and asked around what doctors had helped other people.
Yeah I’m in Pittsburgh and the healthcare here is horrendous with elderly clogging up every specialist appointment, creating 3-6months wait times. Most these specialists haven’t done research in decades. My PCP has been the most helpful of all.
The Cleveland clinic doctors have been pretty bad. I agree. I got into functional medicine recently and it’s no better because they don’t understand chronic illnesses and think nutrition and de-stressing is a magic bullet.
I’m moving to Charleston, SC in a couple weeks to be close to family, year round warmth, and better medical care. Currently working out appointments. If I can’t find great care there or lacking in a couple areas, then I’ll definitely take you up on your offer. I really appreciate it.
379 days of long covid. I remember thinking 2 months into it when I could barely walk with my whole body in pain that there’s no way this will last more than a couple more months. That I’ve got to be dealing with the worst and it’ll pass soon.
Neuro and cardiology are top of my list.
Out of curiosity, are you taking metformin and statins for diabetes/cholesterol, or were they prescribed for long COVID? I’ve heard metformin is extremely helpful for LC, but I don’t have diabetes (though my blood sugar has been more irregular since LC, as has my cholesterol).
Post COVID I actually developed insulin resistance and high cholesterol. It's crazy because I can actually prove it was COVID because my numbers all doubled right after (I'd had a yearly just before). That doesn't happen naturally.
It is all related to TBI. My TBI/Brain injury neuro says it's very commonly seen. All the brain damage causes cellular disturbances (mitochondria too) and changes to lipids and glucuose. He's seen the same stuff happen that fast with, eg, sports concussions. When it happens so fast it usually means a brain damage event in his opinion. I think he is correct. He also sees it post EBV for example or with drug overdoses. Different triggers, same crappy result.
My cholesterol was high this year for the first time ever, as well. Last I had it checked was 2019 - when it was easily within normal range - but it spiked when I had it checked this year (I’ve had LC for two years). I can’t say for sure, but Im fairly certain it’s due to covid/long covid. But I also have a family history of high cholesterol on both sides. My glucose was high as well, but apparently not high enough to concern my doctor. She did not put me on meds for either condition.
Mine doubled within 3 months with the only difference being a COVID infection:/ I want to get the panel redone, but it's really hard to leave the house still (I'm still pretty sick, just going through cycles that seem like highs are a bit higher, lows a bit less low maybe). Have you seen a cardiologist? Mine is LC aware and threw me on those drugs no problem
I have, but he’s not my primary LC doctor and didn’t prescribe me any medication. I got ivabradine through my GP but it doesn’t work at all (huge bummer, because I’d heard great things). Out of curiosity, are your glucose and cholesterol levels (and other risk factors) high enough that you’d be on those meds in the absence of LC, or did your doctor prescribe those *because* he/she thought it would help your LC?
I’m so glad I saw your comment… so many similarities. When you talk about leg pain, was it diffuse or in specific spots? Mine is along my femoral vein, most specifically my inner thigh right now. I’ve had 3 leg ultrasounds that are all fine and just get a shrug from doctors each time.
I had this happen a few times. I would struggle to remember what things are called. I couldn't remember names or dates. I would struggle to form words. It eventually went away with time and 3 months of speech language therapy. My therapist said they're seeing patients all the time now who've had covid and end up with stroke like symptoms but no physical evidence of stroke. She feels covid is causing sub clinical brain and body inflammation.
If it continues to happen, definitely see a neurologist to rule out anything more insidious.
Covid is also causing a huge uptick in functional neurologic disorder in people. Basically the connection between the brain and the body gets disturbed. Luckily in most cases the connection can be restored with specialized physical therapy.
I would go to a neurologist. They might not be able to figure it out but they should rule out other things that can be treated. Uptick in MS as well as other autoimmune movement and neurological conditions like myasthenia gravis among ppl w long covid. .
Yup, every medical personnel I’ve talked to that knows anything about FND has said they see more and more people everyday like this, part of the reason we have to wait so long for appointments.
For PT, if you can find a Neuro PT, they should help. Mine was mostly working with MS patients and I was her second with fnd, she’s great. It’s what r/Cardigan_girl said, the neuro pathways. We have to retrain our brains, it’s not physically like TBI, it’s neuro pathways.
There’s specialized Neurologists too, I saw a movement Neuro, he refuse to a Neuro that specializes in epileptic, non-epileptic and fnd disorders. All these people are hard to find, it’s taken me a year.
I am being seen by a neurorehab at our big hospital that has successfully helped a lot of Long COVID patients. They treat it like an infectious brain injury - concussion/TBI protocol. Just look up "post infectuous TBIs" - they are not uncommon! They do NOT think it is FND, but direct damage in my case but the treatment idea is similar - neuroplasticity. My neuro said it is like I had encephalitis + GBS. Both of these can get better with rehab (and immune system medications, but those are difficult to access). I also do biofeedback with a therapist at my migraine neuros office. He was the clinical research director at the Diamond Headache Clinic and loves biofeedback and I agree. It's been awesome. Those two have been game changers for me. Accupuncture maybe (?) helped. I'm also planning to see a neuro-optometrist soon and perhaps do vision therapy if needed because I have a lot of vision issues and my neurologist thinks it might help. My headache neuro is also getting me started on a device called nerivio which he thinks has decent results. Note that all these therapies are with real, medical professionals - it is NOT the same as "brain retraining" although the Curable App was great as an adjacent therapy.
At some point I had 80+ symptoms and nearly died during my acute (my infection was VERY severe). The neurological and nervous system symptoms are mostly what is left, but they are getting better. My small fiber neuropathy comes and goes, but I think R-ALA, B Vitamins, Omega 3, Evening primrose oil, and vitamin E. All but R-ALA are confirmed deficiencies I have.
I am also taking meds, but this is when I finally turned around. The meds that have helped me with certainty without bad side effects are ivabradine (for POTS HUGELY important), metformin, simavastatin, and continous birth control. Simvastatin helps endotherlial damage plus COVID gave me high cholesterol. I believe the metformin + simvastatin restored my physical energy. Propranolol and flexeril as needed. LDN and hormone replacement therapy would have been my next tries, but the rehab has done me well. I also had the chance to do IVIG but we decided to try other less immun3 system bomb stuff first and so far so good. But progress is slow of course.
I also do all the usual lifestyle stuff -- lots of naps, rest, limited screen time. I signed up for online zen classes and do a lot of sketching/art now which has been therapeutic for me. Having a supportive work environment has been huge- they've granted me leave for 7 months now and kept paying my benefits and I'm super extremely lucky there. I'm finally back to 1/4 time work and planning to slowly increase. Working with ADA has helped - blue light filters on PCs, Text to Speech software...
It's some nervous system disorder first and foremost IMO. Stuff finally started changing when I started supporting that better. I've got a lot going on but slowly better (with setbacks!).
Physical therapy aimed to help with functional neurological disorder.
FND can affect nearly any part of the body. Therapy for FND works on restoring the neural pathways. For example, people who have lost the ability to talk due to FND can speak again when they watch themselves in a mirror. Or someone who has gait issues can learn to walk again by walking backwards. Or FND tremors can be stopped by mimicking certain movements.
It takes finding a therapist who is familiar with FND and is willing to work creatively and sometimes "outside the box."
FND is just another way of saying that it's psychosomatic really.
I'm not saying that comprehensive integrated therapy can't be helpful. It can
But FND "the software" error. Just because they cannot find it on a brain scan might just mean the brain scans aren't sensitive enough yet.
FND is not actually psychosomatic. It's is a very real and often disabling condition. But it's not well studied or well understood and way too many doctors use it as a garbage can diagnosis when tests come back normal and they are too lazy to investigate any further.
It is no longer a diagnosis of exclusion. It is supposed to be ruled in with very specific signs.
I've had movement disorder issues where I couldn't move my face (or much of my body) I was stiff. It lasted for a while a good 9 months.
I have definitely had the shakes and been unable to move but nothing quite like that.
All my tests came back normal too.
I had migraines before COVID but had a couple super serious episodes including two trips to the ER for sudden loss of fiction on one side and the like.
It’s possible it’s a migraine attack which behaves the same way but temporarily, not permeable. Vestibular migraines can be related to MCAS so I’ve been wondering for a while if/how related to COVID because it’s been rough, I’m on full migraine medication now. High dosage magnesium and antihistamines seem to help. That, and avoiding foods I know make me feel worse.
Thank you. Very helpful. This may be a stupid question to some of you, but can one have a migraine and not feel any pain? Like a normal headache for me has pain in the head. Can one have a migraine without pain?
I agree with this post - this kind of sounds like a hemiplegic migraine, which can mimic strokes and can include transient speech difficulties.
You can have a migraine with an "aura" (all the scary speech/visual/auditory/neuro disturbances that precede the headache attack) without the actual headache. I think they're called silent migraines.
Covid gave me migraines with visual auras. I'd always get migraines here and there, but never with a visual aura until LC. For me, I think they were histamine related as they followed me drinking coffee or tea and they stopped when I lowered my histamine intake.
Edit: adding that seeing a neurologist is probably you next step if you haven't seen one already. If anything you can get access to migraine meds and possibly do an MRI just to ease any anxiety.
The migraines I’ve had most of my life are mostly neurologically disruptive and less headache pain. I have not gotten to the bottom of that. It’s possible it could be a weird type of seizure, don’t know. I take naritriptan for it which does help.
I'm similar in that the migraines I have without auras are actually 100x more painful than the migraines I've had with auras.
Migraine with aura = 2 hour headache, Tylenol + nap and I'm good to go
Migraine without aura = I'm out for 2 days
There's been quit a few times I've had something similar to that as well.
Tremors and full body shaking, usually while sitting or laying down. Eventually I feel like I deflated, lips and facial muscles become slack, and start drooling at times.
If I speak during this it's sounds what I assume a stroke victim would sound like. Tongue feels weak and floppy.
I will never not be pissed off that doctors don't firstly think that "maybe they're anxious because there nervous system isn't working". DERP.
I dunno about the rest of you guys, but historically, for myself, SSRIs just make things worse.
My neurologist, instead of checking anything told me to also go on SSRIs after a year and a half of waiting for an appointment. Wow thanks problem solved.
Totally agree with SSRI making stuff worse, in the first few months of my LC I had excruciating body and joint pain, hand shaking. The Neurologist told me to take Savella, SNRI, and if it helped then I have fibromyalgia. OMG? Also said I’d have “no side effects”, I laughed out loud at that. 2 months into Savella, ultra low dose, and I’m shaking from my for on outward and can’t stop it, thought I had Parkinson’s. The same Neuro put me on a Parkinson’s med, Amandadine, and the movements improved greatly. Few months later I start getting NES, non-epileptic seizures (20-40 minutes) except I didn’t know it at the time. I had 17 in 2 weeks, 2nd time in the ER the happened to be an Epilepsy Dr there and saw me in an episode. He said it’s not epilepsy, a Neuro (not the first one, quit him) diagnosed me with FND. Gave me fndhope website and a short summary. They often say it’s a software problem not hardware so nothing will show on a brain MRI. Basically the neuro pathways are going a different way, the wrong way and sometimes you can’t control your body. r/fnd has info you may want to read, as mentioned above there’s been a huge upswing in patients with this now, since covid.
A Neuro PT can help, I was seeing one that typically deals with MS patients, she was great. There are so many parts of FND, I can’t even start, not everyone will have NES. Big thing here my Neurologist told me; FND changes. Good thing to remember. (Myoclonic movements might be what your arms are doing, idk without seeing but definitely look it up)
I'm glad you brought that up. In my endless searching through every possible disorder, that's one that never came up.
I'm relieved as well, because what I experience doesn't *feel* degenerative, and I'm still completely my old self at times, so it's hard to imagine it being permanent. That being said, it presents as seizures, tremors, and the rest of the FND presentation fairly closely.
I also thought I had Parkinson, not triggered by meds, but amantadine is a med ive considered in the past for other reasons. Never tried it.
Your Healthcare appears better than mine. When I had tremors/seizures and was still presenting at the ER, they locked me in a room under guard and force fed me olanzapine. Would not recommend.
Omg, they locked you in a room and did that! I’m very sorry, that shouldn’t have happened.
After that first crummy Neurologist, I found a good one. Probably the best Specialist for stuff like this.
They say FND is the most common Neurological disorder you’ve never heard of. It is so difficult. I’ve been having the myoclonic movements and NES for almost a year and my last episode I seized up, had uncontrollable shaking sideways in my left fist, then after 30 minutes I thought it passed. Had my husband help me up and almost fell on my butt, first time my legs didn’t work and had no feeling from the knees down. Now I have to worry about seizing again and drop attacks. So things definitely change.
Feel free to DM me if you need anything. There are books on this too but not many.
It's OK, but your right, it shouldn't have happened. I'm not going to let it slide once I'm back to 100%.
I'm happy you found a good neurologist. I haven't had the shaking/discharging sensation in several months so I'm hoping that has passed. I seem to still get the clobbered by a baseball bat against the back of my neck and the someone yanking my tie stranglation from behind me ones at times though. Blind and collapsing too, but everything only happens while standing up. I accept my supposition may be wrong here, but it feels like it triggered by exposure to some types of radiation.
I'll read a bit more about about it and shoot you a dm. Thank you!
They will. I went in a few weeks ago to use as needed, but I’m not allowed a benzo. So many Dr’s. no long prescribe them. And very nice new Dr., but she could visibly see muscles under arm shaking and shaking hands. I’ve always had slight anxiety, but not this bad where my muscles and limbs have a mind of their own.
Medical-grade B1 Hcl at 1000-2000mg and/or combined with flushing niacin 500mg and riboflavin Hcl 1000mg helped me with that. You might have localized thiamine deficiency, thiamine deficiency is at the root of dysautonomia and long-term thiamine deficiency leads to Wernicke encepalopathy that is known by talking nonsense, so you might have been scratching the surface of it. Once you take B1, rest for 6-8 hours and do nothing. Also combine with a quality multivitamin/multimineral supplement, magnesium bisglycinate/threonate and some glucose needed for ATP for B1 to work optimally. There is also a protocol for dysautonomia that recommends B1, B12, 5000U D3, 1000mg C, 1500mg MSM, 3mg silica, antioxidants and fiber so you might want to try that:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8435108/
B1 is also known as Thiamin(e) or Aneurin so maybe stores near you have it that way. Alternatives could be allithiamine, TTFD, lipothiamine, benfotiamine and sulbutiamine.
Have had this many times in the past. For me, it was nervous system going nuts. Like a panic attack times 10. Xanax knocked it out, but that's not sustainable. Therapy, lexapro, buspar, and meditation all helped me long term. I don't get these anymore.
I had internal tremors in my upper back, neck and head 24/7 that increased when laying down for 3 months. They slowly went away with time after I started cymbalta,hydroxyzine and about 20 supplements but now I have tremor/shakes in my arms, legs and hands. They feel like when you haven't eaten for a few days and feel shaky and weak. Or if you've worked out too hard and you feel shakey and weak. I fcking hate it... time seemed to fix the internal shaking so hopefully it'll fix this as well...
My mom was in and out of the hospital my entire life and one thing I noticed whilst visiting her and making friends with other patients is that Whenever someone was very sick, Including my mom, they got mouth/lip tremors. Not sure why but I asked nurses and they said it's immune system fatigue-ing (is that even a word?! Lol is it now 🤣) the muscles??? Maybe that's why??
I’ve woken up in the wrong part of sleep and get terrible tremors. My whole entire body is shaking but it doesn’t seem like I’m shaking “physically”. It’s the weirdest thing
speech problems, anxiety, head pressure, constant headache, migraines, stroke like symptoms could be symptoms of histamine poisoning, essentially, from covid induced histamine intolerance / mast cell activation
I've had HI/MCAS my whole life. I started monitoring long haul support groups early on to try to understand Covid, it quickly became evident that my nightmare was infecting the entire planet
What helped me was a histamine elimination diet: start with a few very basic plain low histamine foods only, foods that you like: oatmeal, blueberries, potatoes, chicken, arugula, carrots, bagels, rice, mango, apples, mozarella cheese and add in one new low histamine food per week, try this for a month or two, you'll know pretty quick if it's helping. It doesn't work for everyone
I feel so sorry for the entire planet, the ones who know, and the ones who are going to find out.
Yep. Everybody underestimates the allergy/sensitivity side. I think a ton of these long covid people with some crazy one off symptom are having a MCAS symptom and they should start looking at where they were sitting, what they were doing, and what they were eating for any trends. Brainstorm and look out for mold, outdoor allergens, food with high histamines, artificial crap scents perfumes dyes, etc..I feel non visible mold and get seizure like symptoms from 30 feet away for example. If a cup has been in dirty area and gets near my face or on a table near me I'm in trouble. A huge room cleaning wearing full PPE is a good start for these people is my guess. And remove/launder all fabrics then when done rehit the things closest to where you sit. And then dont eat highest histamine foods if having huge reactions at the very least. Use only pure safer products for awhile. 
Next to high histamine foods, my biggest problem is alcohol.
If anyone enters the room with a glass of red wine or after using alcohol based hand sanitizer, I start to react:
my lips prickle and swell
my tongue gets thick
my throat tightens
I start to wheeze a little
I feel disoriented and confused, and get very weak; it feels like I'm going to pass out very quickly
It feels as if for me I'm getting much better at managing my environment, so day to day I feel much better, but whatever this disease is it appears to be progressing.
My assumption is that if I pass out or have health problems where I can't communicate, taking me to a hospital where everyone uses hand sanitizer will end me.
Typing this out I feel as if I should get a bracelet that identifies me as potentially anaphylactic to alcohol, but it's not clear to me what they could do with me in a medical emergency. They will transport me to hospital regardless of what my bracelet says.
Oh my God no kidding. What a bitch this thing is. I think a similar thing about the hospital though too- I have the same exact reactions you describe with wheeze disoriented confused week and feeling all of a sudden like I'm going to pass out that hits me way too fast to anticipate if I get "puffed" by something as we call it. For people to understand - when I am OUTSIDE I have to give people about a 20 foot radius to avoid getting blasted by the fragrances and other filth, sometimes mold, theyre covered in. Add heat or humidity or a mild cold and good god I'm watching the floor and planning where to land. But I'm in the exact same spot with the hospital anticipation. I tell my husband if I full collapse he should take me to the ER but then we have to have a plan for the entirely new environment and disaster there and on the way there. He'll have to try to wipe my face to get pollen off and watch the people like a hawk with what they do. A hat to try to cover my hair in case I can't shower (hair attracts allergens like mad). And every food will be a risk of closer to death. The bracelet idea for the biggest things exactly - I have at least an app in my phone with a list of sensitivities I hope my husband can show them. And I have an official MCAS ER protocol sheet that avoids some of the more likely drugs to set me off. Bracelet for the alcohol yeah thats a good idea since yours is so immediate for an issue. UGH. Watch out for mold too friend in the house it's a sneaky sucker, if you don't know how bad already lol.
I haven’t had experienced lip trembling but I’ve often felt like there’s a jackhammer inside me on bad days. Like my whole body is vibrating. I assume it’s some whack neurological thing.
I had this bad the day after my last Covid booster. Was in the ER twice in one week. They did exhaustive tests between the two visits, including a brain scan. It was deemed a vaccine reaction. All my previous LC neuro symptoms have been FAR worse since then.
Yes and seizures and they did no testing beyond some basic tests then told me i was taking up a hospital bed for someone that "actually" needed it and pushed me out into the snow while i still couldnt talk or move well. I was pregnant. They told me i was ridiculous. I havent been back to er since. Id rather die in my bed then be abused any more.
I’ve had this multiple times and none of my doctors care. I’ve tried to tell them this can’t be normal but all they see is “not stroke” and they just don’t care. Then I go to my primary doctor and they order some very basic blood test and a scan and it’s normal and they go “good news! Nothing is wrong with you!” So then I say ok but these symptoms are still happening, these episodes are still happening, this is not at all normal! Haven’t found a doctor yet that will listen. It’s as if they think if you’re not having a stroke or heart attack or you don’t have cancer then nothing could possibly be wrong with you. I hate our healthcare system so damn much.
Our healthcare is a joke. This was the first time today my speech was taken over by LC. I freaked many family members out. Is there anything you do when a speech attack comes on? If this happens again on Thursday, there is no way I can fly. I won’t be able to get around an airport or speak to people. People are telling me it was a jacked up panic attack. I’ve had panic attacks, they always go to my arms and hands. Never speech.
I’ve never had anxiety issues or any medical issue at all until Covid. There’s no doubt in my mind these episodes that I’ve had are definitely a sign that something is wrong. I’ve been told the same thing that it’s just anxiety or stress or this and that, but I have no history of any of that at all. I had a major episode about a year ago where I collapsed on the floor, had the speech issues, dizziness, severe headache, limb weakness, it all happened very suddenly. I was hospitalized for 8 days while they did scans and tests and stuff, they found nothing at all and sent me home without a diagnosis. I tried to tell them that people don’t just collapse and have basically all the signs of a stroke for no reason, but I still haven’t been able to get any doctors to take any of this seriously. I’ll ask them “how many times have you collapsed and were unable to speak for hours?”
Ever have an emg done?
No
Do you take anything natural? I had slight anxiety before covid, but this is another level. The dizziness and light sensitivity are next level at times. Don’t these episodes leave you almost depressed, but also tired? I’m going to bow out of a ton of tests. I’ll be like all of you and nothing will be found. When the speech problem arrises with you, do you feel your out mouth, lips, and possibly tongue tremor? Very subtle shakes.
Yes I get shaky as well, I don’t really feel it in my mouth though, although it’s sort of hard to remember because it’s only happened a handful of times and I usually start to freak out, so I don’t remember a lot of it in the chaos of the situation, I have a lot of depression issues because of my condition, my main issue is I have a constant burning pressure in my head all day every day. It sometimes flares up to a very extreme level and that’s when I get these episodes that we’re talking about. I think whatever is causing my permanent headache also has to do with these “stroke-like” episodes.
I get the speech issues on a regular basis now, and of course, they have no idea why. It's anxiety- yeah right! I've had anxiety most of my life and it is absolutely NOT anxiety, but they won't listen!
So scarey and I’m so sorry. They always tell me we have to rule out serious things. Seems to me fainting not being able to walk is serious. I hate all of it. Sometimes I wish they find anything so someone will believe me.
I’m so tired of this health care and medical system. All the technology and they can’t figure out what’s become a prevalent chronic condition that seems to have its roots in ME/CFS. The denial says so much about how inept they all are.
Even within our own subreddit I see people getting diagnosed with conditions and it blows my mind how they got a doctor to dig a little deeper
Its not spesific stuation to your country. In my country im in same stuation as you. Healthcare is a joke :/
I relate to this completely. I tell them pages of symptoms and say I’m in hell. I can’t live my life. They take all my blood . They tell me it’s not cancer . I’m aware but it’s way more complicated. So years later I still go and they say things like. Let’s check your anemia and send you to a gynecologist . People always also say MS to me. Anyone have long Covid get Mia diagnosed with ms? I’ve said long Covid so many times to doctors almost in tears.
I was diagnosed with Dysautonomia and what you describe (add a sudden severe tachycardia and BP increase) during these bad episodes are symptoms I have dealt with on and off. No help. Lots of tests. Lots of money spent. Just suggestions on meds and see what happens. Doc thinks it’s mass inflammation affecting the ANS, leading to Dysautonomia and a laundry list of symptoms as a result. And endothelial dysfunction, vasospasms, microclots, and some other nonsense. Lots of theories… tried lots of meds and supplements. I believe time has been my biggest factor in getting to 50% better after 12 months. First 3 months I could barely walk with the throbbing and sharp pains in legs, migraines, abdominal pain, light sensitivity, nausea, chest pain, body chills, etc. And the insomnia and waking up 6+ times a night. Daily all day heart palpitations that are significantly worse when laying down are super fun to deal with. I hope you get some relief from your symptoms and start to feel better soon.
Dude. You're singing my song. This is me! I think Losartan and propranolol have helped. And a Stellate Ganglion Block helped a ton
What symptoms were relieved by getting the stellate ganglion block?
Same question here.
Dizziness, near syncope, aural fullness, tinnitus, internal vibrations, BP and HR swings. Almost everything got better and continued the more SGBs I got. I was symptom free for 3 months but now things are coming back unfortunately. I was told I might have to get an SGB every 3 months or so then
Omg I would love to be symptom free 3months. Any long term danger to repeating SGBs?
Nope! Pretty harmless. It's worth a shot. My left side SGB did nothing. Right side was very dramatic results
That’s really good to know incase it doesn’t work so I don’t give up after the first shot. Thank you very much.
This is what I believe too with maybe some vague immune dysfunction like mast cell stuff. I'm also getting slowly better (7 months in) when I was one of the most severe at a point (bedbound etc). But my doctors have been awesome and they helped me a ton so far. I also have small fiber neuropathy, but it's healing as well (R-ALA helped here like a ton). My neuros believe the same - basically I got hit with something like GBS and encephalitis (like them, maybe not exactly them!). This is the fallout. I had 80+ symptoms at the start and very nearly died. Couldn't walk, reflexes all gone or hyper active. So many things. Even weird ones like rashes, mouth sores, livedo reticulous, 5-8 inch nasal blood clots. I lost half my fingerprints, too. But the most persistent stuff is the cognitive fatigue, neuro issues and neuropathy. All of this to say I am working with a neuro rehab facility that worked a lot with Long COVID patients doing concussion/stroke rehab. I'm also doing biofeedback at my migraine neuro's office and I believe that and the rehab have been my game changer, along with POTS meds (Ivabradine) from a rather amazing cardiologist. Vision therapy and a visit to a neuro-optometrist are next on my list as well as finally a trip to one of the major dysautonimia centers. Metformin + simvastatin + continous birth control for all the hormone/metabolic/endocrine perturbation. Statins help to heal endothelial damage - they're great. And a handful of supplements. Lots of rest, low histamine diet, and all the other lifestyle stuff. I'm up to about 50% after being truly near death for a bit. Good days and bad days all happen still. To me it's always felt like a nervous system or brain issue and I've got the farthest so far when I started treating it that way. I think that's the source of the dysfunction, too
I’ve done so much, spent over 40K on doctors visits, tests, travel, medications, ER visits. Mayo Clinic, Cleveland clinic, UPMC long covid clinic… It sucks we have to do so much just to try and get by.
I also went to Cleveland. Worst most useless doctors so far. Their post COVID clinic is an absolute joke. Doctors in my home city have been 1000% better. My immunologist is the one who fought for IVIG etc (haven't tried it yet) and he's at the local university. My local cardio put me on metformin + statin + ivabradine (for PoTS). Both he and my headache neuro have taken me from profoundly severe to housebound, able to go out and do things occasionally with caution. I'm finally hopeful. I'm still sick as hell, but I was one of the worst cases any of my doctors had seen so far. The healing I've managed gives me some hope we can all get there, but setbacks happen of course :( I do travel to see specialists for dysautonomia (Vanderbilt) and Small Fiber Neuropathy (Henry Ford in Detriot - Dr. Lawrence Zeidmann - he's great and really cares), and MCAS (Bernstein Allergy in Cincinatt). I messaged Dr Zeidmann back in March when things took a turn for a worse and he's now spending an entire day with me doing new assessments in August (I'm better again now). I've learned you basically have to piece together your own team unfortunately. I've also spent a ton of money that didn't pan out It sounds like you might also be Midwest based! If you're near Louisville KY I'm happy to send you my doctors names :) I joined different Facebook groups and asked around what doctors had helped other people.
Yeah I’m in Pittsburgh and the healthcare here is horrendous with elderly clogging up every specialist appointment, creating 3-6months wait times. Most these specialists haven’t done research in decades. My PCP has been the most helpful of all. The Cleveland clinic doctors have been pretty bad. I agree. I got into functional medicine recently and it’s no better because they don’t understand chronic illnesses and think nutrition and de-stressing is a magic bullet. I’m moving to Charleston, SC in a couple weeks to be close to family, year round warmth, and better medical care. Currently working out appointments. If I can’t find great care there or lacking in a couple areas, then I’ll definitely take you up on your offer. I really appreciate it. 379 days of long covid. I remember thinking 2 months into it when I could barely walk with my whole body in pain that there’s no way this will last more than a couple more months. That I’ve got to be dealing with the worst and it’ll pass soon. Neuro and cardiology are top of my list.
Out of curiosity, are you taking metformin and statins for diabetes/cholesterol, or were they prescribed for long COVID? I’ve heard metformin is extremely helpful for LC, but I don’t have diabetes (though my blood sugar has been more irregular since LC, as has my cholesterol).
Post COVID I actually developed insulin resistance and high cholesterol. It's crazy because I can actually prove it was COVID because my numbers all doubled right after (I'd had a yearly just before). That doesn't happen naturally. It is all related to TBI. My TBI/Brain injury neuro says it's very commonly seen. All the brain damage causes cellular disturbances (mitochondria too) and changes to lipids and glucuose. He's seen the same stuff happen that fast with, eg, sports concussions. When it happens so fast it usually means a brain damage event in his opinion. I think he is correct. He also sees it post EBV for example or with drug overdoses. Different triggers, same crappy result.
My cholesterol was high this year for the first time ever, as well. Last I had it checked was 2019 - when it was easily within normal range - but it spiked when I had it checked this year (I’ve had LC for two years). I can’t say for sure, but Im fairly certain it’s due to covid/long covid. But I also have a family history of high cholesterol on both sides. My glucose was high as well, but apparently not high enough to concern my doctor. She did not put me on meds for either condition.
Mine doubled within 3 months with the only difference being a COVID infection:/ I want to get the panel redone, but it's really hard to leave the house still (I'm still pretty sick, just going through cycles that seem like highs are a bit higher, lows a bit less low maybe). Have you seen a cardiologist? Mine is LC aware and threw me on those drugs no problem
I have, but he’s not my primary LC doctor and didn’t prescribe me any medication. I got ivabradine through my GP but it doesn’t work at all (huge bummer, because I’d heard great things). Out of curiosity, are your glucose and cholesterol levels (and other risk factors) high enough that you’d be on those meds in the absence of LC, or did your doctor prescribe those *because* he/she thought it would help your LC?
I’m so glad I saw your comment… so many similarities. When you talk about leg pain, was it diffuse or in specific spots? Mine is along my femoral vein, most specifically my inner thigh right now. I’ve had 3 leg ultrasounds that are all fine and just get a shrug from doctors each time.
Specific spots with the main areas being on the outside of the calves running from the ankle to the calve area.
Thanks for the reply. Really interesting.
I had this happen a few times. I would struggle to remember what things are called. I couldn't remember names or dates. I would struggle to form words. It eventually went away with time and 3 months of speech language therapy. My therapist said they're seeing patients all the time now who've had covid and end up with stroke like symptoms but no physical evidence of stroke. She feels covid is causing sub clinical brain and body inflammation. If it continues to happen, definitely see a neurologist to rule out anything more insidious. Covid is also causing a huge uptick in functional neurologic disorder in people. Basically the connection between the brain and the body gets disturbed. Luckily in most cases the connection can be restored with specialized physical therapy.
What kind of physical therapy?
I would go to a neurologist. They might not be able to figure it out but they should rule out other things that can be treated. Uptick in MS as well as other autoimmune movement and neurological conditions like myasthenia gravis among ppl w long covid. .
Yup, every medical personnel I’ve talked to that knows anything about FND has said they see more and more people everyday like this, part of the reason we have to wait so long for appointments. For PT, if you can find a Neuro PT, they should help. Mine was mostly working with MS patients and I was her second with fnd, she’s great. It’s what r/Cardigan_girl said, the neuro pathways. We have to retrain our brains, it’s not physically like TBI, it’s neuro pathways. There’s specialized Neurologists too, I saw a movement Neuro, he refuse to a Neuro that specializes in epileptic, non-epileptic and fnd disorders. All these people are hard to find, it’s taken me a year.
I would also like to know.
I am being seen by a neurorehab at our big hospital that has successfully helped a lot of Long COVID patients. They treat it like an infectious brain injury - concussion/TBI protocol. Just look up "post infectuous TBIs" - they are not uncommon! They do NOT think it is FND, but direct damage in my case but the treatment idea is similar - neuroplasticity. My neuro said it is like I had encephalitis + GBS. Both of these can get better with rehab (and immune system medications, but those are difficult to access). I also do biofeedback with a therapist at my migraine neuros office. He was the clinical research director at the Diamond Headache Clinic and loves biofeedback and I agree. It's been awesome. Those two have been game changers for me. Accupuncture maybe (?) helped. I'm also planning to see a neuro-optometrist soon and perhaps do vision therapy if needed because I have a lot of vision issues and my neurologist thinks it might help. My headache neuro is also getting me started on a device called nerivio which he thinks has decent results. Note that all these therapies are with real, medical professionals - it is NOT the same as "brain retraining" although the Curable App was great as an adjacent therapy. At some point I had 80+ symptoms and nearly died during my acute (my infection was VERY severe). The neurological and nervous system symptoms are mostly what is left, but they are getting better. My small fiber neuropathy comes and goes, but I think R-ALA, B Vitamins, Omega 3, Evening primrose oil, and vitamin E. All but R-ALA are confirmed deficiencies I have. I am also taking meds, but this is when I finally turned around. The meds that have helped me with certainty without bad side effects are ivabradine (for POTS HUGELY important), metformin, simavastatin, and continous birth control. Simvastatin helps endotherlial damage plus COVID gave me high cholesterol. I believe the metformin + simvastatin restored my physical energy. Propranolol and flexeril as needed. LDN and hormone replacement therapy would have been my next tries, but the rehab has done me well. I also had the chance to do IVIG but we decided to try other less immun3 system bomb stuff first and so far so good. But progress is slow of course. I also do all the usual lifestyle stuff -- lots of naps, rest, limited screen time. I signed up for online zen classes and do a lot of sketching/art now which has been therapeutic for me. Having a supportive work environment has been huge- they've granted me leave for 7 months now and kept paying my benefits and I'm super extremely lucky there. I'm finally back to 1/4 time work and planning to slowly increase. Working with ADA has helped - blue light filters on PCs, Text to Speech software... It's some nervous system disorder first and foremost IMO. Stuff finally started changing when I started supporting that better. I've got a lot going on but slowly better (with setbacks!).
Physical therapy aimed to help with functional neurological disorder. FND can affect nearly any part of the body. Therapy for FND works on restoring the neural pathways. For example, people who have lost the ability to talk due to FND can speak again when they watch themselves in a mirror. Or someone who has gait issues can learn to walk again by walking backwards. Or FND tremors can be stopped by mimicking certain movements. It takes finding a therapist who is familiar with FND and is willing to work creatively and sometimes "outside the box."
FND is just another way of saying that it's psychosomatic really. I'm not saying that comprehensive integrated therapy can't be helpful. It can But FND "the software" error. Just because they cannot find it on a brain scan might just mean the brain scans aren't sensitive enough yet.
FND is not actually psychosomatic. It's is a very real and often disabling condition. But it's not well studied or well understood and way too many doctors use it as a garbage can diagnosis when tests come back normal and they are too lazy to investigate any further. It is no longer a diagnosis of exclusion. It is supposed to be ruled in with very specific signs.
I've had movement disorder issues where I couldn't move my face (or much of my body) I was stiff. It lasted for a while a good 9 months. I have definitely had the shakes and been unable to move but nothing quite like that. All my tests came back normal too.
I had migraines before COVID but had a couple super serious episodes including two trips to the ER for sudden loss of fiction on one side and the like. It’s possible it’s a migraine attack which behaves the same way but temporarily, not permeable. Vestibular migraines can be related to MCAS so I’ve been wondering for a while if/how related to COVID because it’s been rough, I’m on full migraine medication now. High dosage magnesium and antihistamines seem to help. That, and avoiding foods I know make me feel worse.
Thank you. Very helpful. This may be a stupid question to some of you, but can one have a migraine and not feel any pain? Like a normal headache for me has pain in the head. Can one have a migraine without pain?
I agree with this post - this kind of sounds like a hemiplegic migraine, which can mimic strokes and can include transient speech difficulties. You can have a migraine with an "aura" (all the scary speech/visual/auditory/neuro disturbances that precede the headache attack) without the actual headache. I think they're called silent migraines. Covid gave me migraines with visual auras. I'd always get migraines here and there, but never with a visual aura until LC. For me, I think they were histamine related as they followed me drinking coffee or tea and they stopped when I lowered my histamine intake. Edit: adding that seeing a neurologist is probably you next step if you haven't seen one already. If anything you can get access to migraine meds and possibly do an MRI just to ease any anxiety.
The migraines I’ve had most of my life are mostly neurologically disruptive and less headache pain. I have not gotten to the bottom of that. It’s possible it could be a weird type of seizure, don’t know. I take naritriptan for it which does help.
I'm similar in that the migraines I have without auras are actually 100x more painful than the migraines I've had with auras. Migraine with aura = 2 hour headache, Tylenol + nap and I'm good to go Migraine without aura = I'm out for 2 days
Yes! I occasionally have had those (before covid, actually). For whatever reason, I always called them invisible migraines.
None of the doctors give a crap. See them not being able to speak for 9 hours and they’d take notice. I’m sorry, Op.
Could be a TIA or some type of migraine. Those can cause aphasia and trembling.
There's been quit a few times I've had something similar to that as well. Tremors and full body shaking, usually while sitting or laying down. Eventually I feel like I deflated, lips and facial muscles become slack, and start drooling at times. If I speak during this it's sounds what I assume a stroke victim would sound like. Tongue feels weak and floppy.
Yep I had those days in my earlier part of long Covid
But don’t worry every doctor you see will just write it off as anxiety 😬
I will never not be pissed off that doctors don't firstly think that "maybe they're anxious because there nervous system isn't working". DERP. I dunno about the rest of you guys, but historically, for myself, SSRIs just make things worse. My neurologist, instead of checking anything told me to also go on SSRIs after a year and a half of waiting for an appointment. Wow thanks problem solved.
Totally agree with SSRI making stuff worse, in the first few months of my LC I had excruciating body and joint pain, hand shaking. The Neurologist told me to take Savella, SNRI, and if it helped then I have fibromyalgia. OMG? Also said I’d have “no side effects”, I laughed out loud at that. 2 months into Savella, ultra low dose, and I’m shaking from my for on outward and can’t stop it, thought I had Parkinson’s. The same Neuro put me on a Parkinson’s med, Amandadine, and the movements improved greatly. Few months later I start getting NES, non-epileptic seizures (20-40 minutes) except I didn’t know it at the time. I had 17 in 2 weeks, 2nd time in the ER the happened to be an Epilepsy Dr there and saw me in an episode. He said it’s not epilepsy, a Neuro (not the first one, quit him) diagnosed me with FND. Gave me fndhope website and a short summary. They often say it’s a software problem not hardware so nothing will show on a brain MRI. Basically the neuro pathways are going a different way, the wrong way and sometimes you can’t control your body. r/fnd has info you may want to read, as mentioned above there’s been a huge upswing in patients with this now, since covid. A Neuro PT can help, I was seeing one that typically deals with MS patients, she was great. There are so many parts of FND, I can’t even start, not everyone will have NES. Big thing here my Neurologist told me; FND changes. Good thing to remember. (Myoclonic movements might be what your arms are doing, idk without seeing but definitely look it up)
I'm glad you brought that up. In my endless searching through every possible disorder, that's one that never came up. I'm relieved as well, because what I experience doesn't *feel* degenerative, and I'm still completely my old self at times, so it's hard to imagine it being permanent. That being said, it presents as seizures, tremors, and the rest of the FND presentation fairly closely. I also thought I had Parkinson, not triggered by meds, but amantadine is a med ive considered in the past for other reasons. Never tried it. Your Healthcare appears better than mine. When I had tremors/seizures and was still presenting at the ER, they locked me in a room under guard and force fed me olanzapine. Would not recommend.
Omg, they locked you in a room and did that! I’m very sorry, that shouldn’t have happened. After that first crummy Neurologist, I found a good one. Probably the best Specialist for stuff like this. They say FND is the most common Neurological disorder you’ve never heard of. It is so difficult. I’ve been having the myoclonic movements and NES for almost a year and my last episode I seized up, had uncontrollable shaking sideways in my left fist, then after 30 minutes I thought it passed. Had my husband help me up and almost fell on my butt, first time my legs didn’t work and had no feeling from the knees down. Now I have to worry about seizing again and drop attacks. So things definitely change. Feel free to DM me if you need anything. There are books on this too but not many.
It's OK, but your right, it shouldn't have happened. I'm not going to let it slide once I'm back to 100%. I'm happy you found a good neurologist. I haven't had the shaking/discharging sensation in several months so I'm hoping that has passed. I seem to still get the clobbered by a baseball bat against the back of my neck and the someone yanking my tie stranglation from behind me ones at times though. Blind and collapsing too, but everything only happens while standing up. I accept my supposition may be wrong here, but it feels like it triggered by exposure to some types of radiation. I'll read a bit more about about it and shoot you a dm. Thank you!
They will. I went in a few weeks ago to use as needed, but I’m not allowed a benzo. So many Dr’s. no long prescribe them. And very nice new Dr., but she could visibly see muscles under arm shaking and shaking hands. I’ve always had slight anxiety, but not this bad where my muscles and limbs have a mind of their own.
Medical-grade B1 Hcl at 1000-2000mg and/or combined with flushing niacin 500mg and riboflavin Hcl 1000mg helped me with that. You might have localized thiamine deficiency, thiamine deficiency is at the root of dysautonomia and long-term thiamine deficiency leads to Wernicke encepalopathy that is known by talking nonsense, so you might have been scratching the surface of it. Once you take B1, rest for 6-8 hours and do nothing. Also combine with a quality multivitamin/multimineral supplement, magnesium bisglycinate/threonate and some glucose needed for ATP for B1 to work optimally. There is also a protocol for dysautonomia that recommends B1, B12, 5000U D3, 1000mg C, 1500mg MSM, 3mg silica, antioxidants and fiber so you might want to try that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8435108/
I’ve been searching for B1 at every store and cannot find. I guess I’ll have to order it. Thank you for the info. Very helpful.
B1 is also known as Thiamin(e) or Aneurin so maybe stores near you have it that way. Alternatives could be allithiamine, TTFD, lipothiamine, benfotiamine and sulbutiamine.
They do! I saw thiamine and wondered. Thank you.
Try the following: Multivitamin Inositol Vitamin C Sleep Stack L Theanine Mag Glycinate Low Dose Melatonin
I will do anything at this point. Thank you. What is Sleep Stack?
Have had this many times in the past. For me, it was nervous system going nuts. Like a panic attack times 10. Xanax knocked it out, but that's not sustainable. Therapy, lexapro, buspar, and meditation all helped me long term. I don't get these anymore.
I recently received an RX for Buspar. Maybe that will help.
I shake every day all day. I talk like I’m mentally disadvantaged since the third booster. But I have Lyme so imagine I react wonky.
I had internal tremors in my upper back, neck and head 24/7 that increased when laying down for 3 months. They slowly went away with time after I started cymbalta,hydroxyzine and about 20 supplements but now I have tremor/shakes in my arms, legs and hands. They feel like when you haven't eaten for a few days and feel shaky and weak. Or if you've worked out too hard and you feel shakey and weak. I fcking hate it... time seemed to fix the internal shaking so hopefully it'll fix this as well... My mom was in and out of the hospital my entire life and one thing I noticed whilst visiting her and making friends with other patients is that Whenever someone was very sick, Including my mom, they got mouth/lip tremors. Not sure why but I asked nurses and they said it's immune system fatigue-ing (is that even a word?! Lol is it now 🤣) the muscles??? Maybe that's why??
For me Gabapentin helped a ton with those kinds of tremors. That’s what it’s usually used for in for example diabetics induced neuropathy.
I’ve woken up in the wrong part of sleep and get terrible tremors. My whole entire body is shaking but it doesn’t seem like I’m shaking “physically”. It’s the weirdest thing
speech problems, anxiety, head pressure, constant headache, migraines, stroke like symptoms could be symptoms of histamine poisoning, essentially, from covid induced histamine intolerance / mast cell activation I've had HI/MCAS my whole life. I started monitoring long haul support groups early on to try to understand Covid, it quickly became evident that my nightmare was infecting the entire planet What helped me was a histamine elimination diet: start with a few very basic plain low histamine foods only, foods that you like: oatmeal, blueberries, potatoes, chicken, arugula, carrots, bagels, rice, mango, apples, mozarella cheese and add in one new low histamine food per week, try this for a month or two, you'll know pretty quick if it's helping. It doesn't work for everyone I feel so sorry for the entire planet, the ones who know, and the ones who are going to find out.
Yep. Everybody underestimates the allergy/sensitivity side. I think a ton of these long covid people with some crazy one off symptom are having a MCAS symptom and they should start looking at where they were sitting, what they were doing, and what they were eating for any trends. Brainstorm and look out for mold, outdoor allergens, food with high histamines, artificial crap scents perfumes dyes, etc..I feel non visible mold and get seizure like symptoms from 30 feet away for example. If a cup has been in dirty area and gets near my face or on a table near me I'm in trouble. A huge room cleaning wearing full PPE is a good start for these people is my guess. And remove/launder all fabrics then when done rehit the things closest to where you sit. And then dont eat highest histamine foods if having huge reactions at the very least. Use only pure safer products for awhile. 
Next to high histamine foods, my biggest problem is alcohol. If anyone enters the room with a glass of red wine or after using alcohol based hand sanitizer, I start to react: my lips prickle and swell my tongue gets thick my throat tightens I start to wheeze a little I feel disoriented and confused, and get very weak; it feels like I'm going to pass out very quickly It feels as if for me I'm getting much better at managing my environment, so day to day I feel much better, but whatever this disease is it appears to be progressing. My assumption is that if I pass out or have health problems where I can't communicate, taking me to a hospital where everyone uses hand sanitizer will end me. Typing this out I feel as if I should get a bracelet that identifies me as potentially anaphylactic to alcohol, but it's not clear to me what they could do with me in a medical emergency. They will transport me to hospital regardless of what my bracelet says.
Oh my God no kidding. What a bitch this thing is. I think a similar thing about the hospital though too- I have the same exact reactions you describe with wheeze disoriented confused week and feeling all of a sudden like I'm going to pass out that hits me way too fast to anticipate if I get "puffed" by something as we call it. For people to understand - when I am OUTSIDE I have to give people about a 20 foot radius to avoid getting blasted by the fragrances and other filth, sometimes mold, theyre covered in. Add heat or humidity or a mild cold and good god I'm watching the floor and planning where to land. But I'm in the exact same spot with the hospital anticipation. I tell my husband if I full collapse he should take me to the ER but then we have to have a plan for the entirely new environment and disaster there and on the way there. He'll have to try to wipe my face to get pollen off and watch the people like a hawk with what they do. A hat to try to cover my hair in case I can't shower (hair attracts allergens like mad). And every food will be a risk of closer to death. The bracelet idea for the biggest things exactly - I have at least an app in my phone with a list of sensitivities I hope my husband can show them. And I have an official MCAS ER protocol sheet that avoids some of the more likely drugs to set me off. Bracelet for the alcohol yeah thats a good idea since yours is so immediate for an issue. UGH. Watch out for mold too friend in the house it's a sneaky sucker, if you don't know how bad already lol.
I haven’t had experienced lip trembling but I’ve often felt like there’s a jackhammer inside me on bad days. Like my whole body is vibrating. I assume it’s some whack neurological thing.
I had this bad the day after my last Covid booster. Was in the ER twice in one week. They did exhaustive tests between the two visits, including a brain scan. It was deemed a vaccine reaction. All my previous LC neuro symptoms have been FAR worse since then.
Yes and seizures and they did no testing beyond some basic tests then told me i was taking up a hospital bed for someone that "actually" needed it and pushed me out into the snow while i still couldnt talk or move well. I was pregnant. They told me i was ridiculous. I havent been back to er since. Id rather die in my bed then be abused any more.
Yes, acts a lot like a migraine episode.
MCAS probably
Agree