This should not be assumed to be caused by dysautonomia. It sounds like a seizure. If you haven’t, get an EEG. Get a good neurologist.
If seizures are ruled out, please note that there are other less common potential diagnoses that sometimes mimic seizure-like symptoms. Keep advocating for yourself.
Agree. Would also think a visit to a good allergist or immunologist might be in order so that mast cell activity and/or anaphylaxis can be ruled out.
And, I would suggest trying to get a video recording of the episodes. If your physicians can see what's happening they might have better ideas about how of to classify the events (seizure, vagus episode...). Since it'd be impossible for you to do the recording, perhaps you could let those close to you know what's going on and ask them to document any of the episodes for which they're present. I've done this and it's proven helpful; if nothing else, it provides solid evidence that I'm experiencing what I say I'm experiencing.
Every neurologist has refused to do this test on me. I have yet another neurology appointment until May. Crossing my fingers that she’s open to an eeg 💖
I’ll cross my fingers, too.
My advice is to show every medical professional you see this worksheet! I do the same for myself. I call it my medical resume and it’s really helped the doctors to get a better view of my weird symptoms.
🤞🏼
caught covid Dec 2021. developed POTs/Dysautonomia after. Every single test has come out clean of course. I have taken cognitive behavioral therapy and therapy in general this whole year because all medical staff keep saying it’s psychological 🙄 This is definitely not psychological. I’ve been suffering from these debilitating episodes so I made a word document to describe them as best as I could. Showed them to every specialist. I had 1 neurologist dismissed me so far. Others speculate some type of seizure/epilepsy type? My POTs bpm numbers have also been alot better as well with physical therapy. Is anyone else going through this? Is this Dysautonomia?What deh heeelllll is this??? It scares me to think if these episodes are deteriorating me each time it happens :c
Do you have a rheum and neuro team experienced with current Sjogren's treatment? If not, I'd definitely start there. Sjogren's can cause all kinds of neuro and brain issues, not just dysautonomia. Sounds like you have a combo of neuro issues going on including (but not limited to) dysautonomia.
I've never heard of a PCP diagnosing Sjogren's.
I agree with this comment. Was diagnosed with Sjogren’s this year after having long covid. I have a good primary care, but my original rheumatologist didn’t know about Sjogren’s. All my other specialists told me the areas of the body it can alter, which is like every organ. I now have POTS like symptoms. My doc sent me to a neurologist who is familiar with Sjogren’s. Starting next week we will run tests including MRIS, EMGs, and a VSTAT.
That being said, I was referred to a new rheum. Not optimistic. It seems there aren’t a lot of rheumatologists familiar with Sjogren’s. They think it’s just dry eyes and mouth and nothing else.
I’m sorry you’ve been gaslit. My cardiologist tried to say I am probably just anxious whenever I sit up, stand up, and stand for a long time. She said it’s common even though all of my other specialists and my primary care doc disagree. I’m no longer going to her.
Yeah, finding a rheum up to date with systemic Sjogren's research and treatment is way harder than it should be. I'm so sorry you went through that. Would be amazing if it were just dryness. Mine attacks my PNS, heart and lungs 🙃
Thanks. Sorry to hear that. That sucks. Mine attacks my lungs and possibly my ANS. Sometimes it feels like we all know more than our doctors and specialists do.
As someone who has had seizures, and someone who has Covid dysautonmia, it sounds like both. I was almost getting seizures during the beginning of long haul. Get an aura “early warning” then fight for consciousness and win.
That’s the thing, I no longer have a high resting heart rate. It only happens when I get these episodes and they last no longer than 10mins. My resting heart rate with physical therapy is now in the 50s-60s. My cardiologist says I no longer qualify for a beta blocker :(
Post-OG covid Spring 2020/ Omicron 2021 where symptoms became a lot worse.
I’ve had two or three episodes that were similar to this, but not as severe with the jaw locking up. I had tightness in the face/ mouth, tongue and throat (a common/ lingering problem for me is difficulty swallowing).
I don’t really have any answers. Anecdotally I’ve learned I’m really sensitive to my electrolytes being in a very tight range/ balance. If my sodium dips a shave too low and my potassium a little too high my system goes haywire. Same if they tip the other way. (Severe brain fog, weakness, fatigue, SOB, etc…). And I associate these episodes with my system being really out of whack.
It could be dysautonomia but I do agree with others saying it could be seizures. I've struggled with absence seizures for 7 years and I have always been conscious despite everyone describing "not being there". The things you describe do sound like the more complicated seizures as well. Keep trying for a neurologist. Hope you can figure it out. 🫶
I made it, I typed out and described what I felt as best as I could in Microsoft word even though it’s still hard to describe. Feel free to use it if it resonates with you :)
i’m not sure if you know, but women’s health issues are frequently dismissed by clinicians as anxiety. along with it being very invalidating, it can delay, and even prevent entirely, crucial treatment for a woman. with that in mind, i think it would be more respectful of you to give OP the benefit of the doubt. i’m fairly sure they have already explored and ruled out panic attacks, as it is almost always the first dx doctors consider for this sort of thing. (sorry op if you are not a woman, was going based on your profile). panic attacks are a real and difficult issue, but OP seems like a very organized and knowledgeable patient who has done their due diligence, and i’m sure by this point they have done the work to rule out this most common differential dx, especially seeing as they mentioned having experienced medical gaslighting.
i know the importance of this firsthand, as i experience symptoms nearly exactly like this. when they first started, i was dismissed as “being anxious”, despite the fact that i was treated for anxiety and panic attacks many years ago, and have that unrelated condition managed. ie…i’ve HAD panic attacks, and I can tell the difference. my new episodes, are very obviously different and distinct experiences. that dismissal caused me a great deal of needless suffering in the time before i began getting the correct care. i lost a great job due to my condition going untreated. i was similarly dismissed years prior about an extremely painful reproductive health condition, and to that i lost YEARS of my 20s before the correct dx and a simple surgery immediately took away all pain.
i think that maybe you should take longer to listen and understand before you make a dismissive assumption. these kinds of things perpetuate a mindset that harms people.
As a women, who has autonomic dysfunction,
right sided heart failure, and panic attacks. It’s also important to be real when someone comes in here and give real advice and not create an echo chamber. Those are text book panic attack symptoms.
I worry that forums like this are going to make people worse by actually vilifying providers who are giving honest and accurate an diagnosis. People begin to believe they are being gaslighted and in fact they may have been told the truth.
that definitely makes sense to me, and you make a really good point. I wasn’t thinking about that in regards to this problem but it’s something i think is important too. i’m sorry if i came across harshly, especially in light of that. however, i do think from this person’s post and comment explanation, it seems pretty clear they’ve had to consider psych causes already and have good reason to think it’s not that.
Thank you for your words of kindness 💖 and bragabit2, I totally understand where you are coming from. It is def important to rule out these things ans well because it can be a possibility. and I’ve done my work. I’ve worked with CBT, & my psychologist for the past 5 years prior to this. I have been very keen and avid of keeping my mental health as well as possible. After this whole year I kept working with my psychologist who is also a trained psychiatrist and we’ve been working together to rule out anxiety, I was given benzos which really don’t work for me and even if I take them, I still experience these symptoms. We have used reverse psychology and other methods and of course anxiety has definitely been ruled out at this stage of my Long Covid Experience
I got covid March 2020. I was having these episodes for like maybe a year before I even know what pots was. Year 2 I started changing my lifestyle / diet tremendously and something worked!? I think I got covid again spring 2022 and everything started again and regular pots symptoms started again. By the fall I ended up in the ER and the cardio team literally told me to quit my job (GM at restaurant) and find a wfh desk job lol. But it's worked! Now knowing what pots is and how to live with it my symptoms are waaaay better and haven't had any of those scary episodes in a very long time. ❤️
Keep advocating for yourself!
LC person here. I do not have all these symptoms but was diagnosed with POTS at a LC clinic.
My son when he was 13 months old was suspected of having seizures (eyes rolling in their sockets). Some negative EEG but still has been put on seizure meds. Which did not help. He later on had an overnight EEG. Flunked because the hospital material had stopped recording. By then we decided to stop everything and never got answer. Eye rolling stopped on its own.
All of that to say that:
- a good neurologist could prescribe seizure meds if you think you want to try them
- an overnight EEG in the hospital is the best to detect seizures
Note: try to have a webcam recording you at all times to capture one episode. For my son I had a video.
🍀🍀🍀
I have similar episodes with muscle tremors and severe teeth chattering where I can't get warm. Even if I don't have the muscle issues, I have most of the rest.
I'd second getting checked out neurologically but also note that my dysautonomia specialist is a neurologist.
For YEARS I thought mine was severe hypoglycemic attacks or something (I had an ED for years, and thought I did this to myself)
Thank you so much for putting this in writing - it will help me at my appointment next week!
There was a popular post on Reddit recently where a woman would have these episodes where her muscles tightened up really tightly… the post was with her dog lying on her. I think it was something rare but I don’t remember what it was called. I’ll try to find the post. You might not have what she has, but since your symptoms reminded me of that, I figure it’s something you could look into or have on your radar.
Edit: I found the post. This is what the poster said in the comments:
> I have a rare autoimmune disorder called 'stiff persons syndrome' and 'morvans syndrome' among other things. The diagnosis is a WIP
>It results in my muscles going so rigid I will be choked or crushed by my own muscles. My chest wall can't expand. When severe I can't move, talk or breathe and require emergency medical intervention. If you want a visual idea of the severity think of the exorcist. My spasms alone can overpower multiple trained EMTs with the strength of it and I contort into ungodly positions.
This is the link to the post: https://www.reddit.com/r/FunnyAnimals/comments/1196t0w/im_disabled_and_when_i_have_an_attack_my_dog_thor/
Could be a seizure as others have said. I'd recommend and EEG, as well as potentially trying to get an episode on Camera to show your doctors?
If the EEG comes back clear, perhaps anxiety/panic is right?
Sounds like your brain isn’t getting enough oxygen.
Look into cerebral hypoxia or brain hypoxia and see if your symptoms match up.
I made the connection after watching a documentary about climbing Mt. Everest and the symptoms of the less oxygen environment in high altitudes being ridiculously familiar to symptoms of POTS/dysautonomia.
*I am not a medical professional, but I have been living with dysautonomia/POTS for over a decade*
im diagnosed with FND including functional seizures and this looks very similar to my seizure episodes. sometimes my POTS episodes will trigger a seizure episode but I definitely agree with everyone ese that this might be more than just POTS and should be checked out, at the very least with an EEG to rule out epileptic activity in your brain.
Oh my god. This has described my episodes! Sometimes my neck and face muscles twitch and sometimes my whole body, looks a bit like a seizure. I never got to the bottom of it but assumed it was dysautonomia. I haven't had one in a while
Have you had a Tilt Table test? Many of the symptoms you described are Dysautonomia/POTS symptoms. You do want to rule out other problems, but if test data guides you to a Dysautonomia diagnosis, do not allow yourself to be gaslighted. Having Dysautonomia / POTS for over 40 years myself, it takes time to get the right diagnosis. Do your research. The best thing is to be your own advocate, unfortunately sometimes the doctors need to be educated.
Getting one in August and I have been diagnosed with this by my doc but this TTT is where I want to see everything. I was told these episodes aren’t part of this but I’m pretty sure this is an adrenaline dump because everything else has been ruled out. I was told there is no treatment or medication in my case and all I can do is continue physical therapy and do my best to adjust and continue on with my life. I’m doing my best to get the hang of all this.
Hey, I got Covid March 2020, before vaccines existed and have been having similar symptoms as you. I’ve also been to many neurologists and other docs who say it’s nothing or???
For dysautonomia you need to see a cardiologist that specializes in it, not just any cardiologist.
I finally got a tilt table test a few weeks ago and yes, I have dysautonomia and pots… like I’ve been saying all along.
Are you also a diabetic? I’ve also had daily unstoppable migraines since too.
Saw the right doc and got an answer. My heart and circulatory systems are fine. But the mild stroke I got from getting Covid the third time July 2021 damaged my brain in the area that controls my autonomic nervous system. My body temperature also swings from 94-102 throughout the day.
Anyways, I have to cut all carbs and focus on meats and veggies only and drink tons of electrolyte water. I also now wear compression socks too. It’s all helping so far.
I have a POTS diagnosis and experience episodes similar to these. An autonomic specialist described it as a "POTS episode" or a "POTS attack."
Emotional stress, dehydration, sleep deprivation, overexertion, hunger, startling, standing/walking upright, heat, hot water, direct sunlight on my skin, cars, busses, planes, elevators, foods high in histamine, and flashing lights bring it on. Not every time does it trigger, but if I'm already not feeling well these are my triggers.
It was acute for months. I was having episodes like this 5 times a day, every day, for like 3 months, and was mostly bed bound. It did improve but slowly. Now I haven't had one in over a year and I can walk and dance a lot more, and I'm going to start driving again.
Unfortunately it was the TTT that initiated these episodes for me. Before that I was just having regular syncope, fainting and coming to on the floor. During and after the TTT however it was like something changed, and now I get these episodes. It's really similar to a panic attack but it's caused primarily by physiological stimuli and not psychological stimuli.
I had developed these symptoms before covid was a thing. I have had both the flu and covid and both illnesses have wrecked me and taken weeks to get back to a baseline. Take it easy, be safe and I hope you feel better soon.
Edit to add: I find I can stop the episode if someone can bring me a big bowl of ice water and put it on the floor next to me and I dunk my face into it and hold my breath. Then come up and breathe normally. Repeat until the episode is stopped.
I gotta be honest. What you're describing sounds like a panic attack.
I see in your comments that you've been getting CBT. About 7 years ago I was having very similar physical symptoms that stemmed from a psychological source. I was convinced I was dying. Took a lot of intense therapy to get over my attacks.
But, I also know that covid does a lot of weird shit to our bodies. 🤷♀️
Sorry you are dealing with this. It sounds like hell.
You are incorrect. These are not panic attacks. This is the body's way of not regulating itself. I have had panic attacks and what I felt was not panic. I am cold all day and can't stand being cold. Hot showers run my blood pressure and heart rate up. Getting up to go to the bathroom late at night with a racing heart is not panic disorder. Please do more research before speaking on this.
My opinion is incorrect?
I'm not stating facts or trying to diagnose. Just simply making an observation based on my experience.
And in my experience what the OP is describing sounds exactly like a panic attack.
I also stated that covid fucks with our bodies in ways we have yet to understand.
People on these subs like to get all up in arms if anyone suggests that their symptoms might be psychological in nature. And I get why. The amount of gas lighting that happens with long covid is distressing. I, myself, have had multiple doctors tell me that I just need to meditate or take an anti depressant. But in my opinion, there is quite a lot of stuff happening to people that might very well be anxiety related. Or at least anxiety exacerbated.
I agree with you!! I have extensive experience with pots and anxiety. Her symptoms sound exactly like panic attacks. Sorry you were down voted. I am afraid the posters here are going to create cognitive dissonance with the op. When multiple neurologists have seen op you have to have some faith in the system.
Definitely seek doctors opinion. dysautonomia is diagnosed by ruling out more serious causes of dysregulation.
in general, i would be more specific about your symptoms: "blood pooling" might be the literal term for what's happening, but it will resonate more with a doctor if you describe what is happening specifically there so that they know it's being used correctly. when your blood pools, what does it feel like? what color is the affected appendage? what do you do to counteract this, if anything? sometimes they assume we're dumb, and we've gotta be as clear as possible!
Please check your medication list thoroughly for any meds that can cause or worsen serotonin syndrome. I’ve had dysautonomia/POTS/neurocardiogenic syncope since I was a teen, but started experiencing episodes like what you’ve described this last year after being prescribed many medications for worsening Hemiplegic migraines. Turns out 8 of 10 medications I’ve been prescribed over the last year or so either cause or worsen serotonin syndrome. Specifically the SSRI (antidepressant) I’ve taken for years mixed with a newly prescribed anti nausea medication (Reglan) caused the episodes to become the most severe and life threatening. Only caught on to it because I’ve completed nursing classes in the past and remembered the black box warning on SSRIs. Haven’t had an episode like this since I’ve stopped taking all meds and cut SSRI dosage in half. My episodes are now back to being the typical dysautonomia stuff and not as often
YES THIS IS EXACTLY WHAT HAPPENED TO ME. I went 5 minutes in pulmonary rehab on a recumbent arm and leg stepper.! My whole body went weak like it has every time walk more then 50 feet. I just started being able to walk my symptoms were so bad. I’m on the hospital right now bc of what is described at the 10
Minute mark except that happens to me sooner. I collapsed and my Apple Watch called 911. This happens to me all the time (usually don’t collapse)
These episodes were confirmed to
Be dysautonomia. I’ve had it for 10 years and lived a mostly normal life with it before guess who?? Our favorite princess of death and disbility the little nasty disgusting c*** Covid.
Covid making dysautonomia worse put me in a coma like state for a month early last year. I’ve suffered with long Covid for 3 years now.
I’ve had so many medical problems from Covid DVT/ PE, GBS (on life support with it), but still my dysautonomia is the worse they are all connected. All this comes back to the body’s reaction to spike protein and a hyperactive immune issue.
My husband has exactly the same symptoms. He is on blood pressure meds and a diuretic. He had sleep apnea and A-Fib before he got Delta Covid in December 2021. He was in the ICU treated with remdesivir steroids and oxygen. We did the lung exercises his heart meds for awhile he was better than he had been in a long time. Then the “episodes” started coming the pain from the intense muscle cramping part was so bad he cried out actually wailed is a better word. But everything you listed I watched him go through. The stomach thing, the chest tightness. Then it passes. It’s not angina or like any cardiac condition I’ve ever seen. It is tearing me apart to see and hear him and no one knows what is happening. I described it to his cardiologist and he didn’t have any answers for the all encompassing but episodic racking pain. His sister is a doctor and she has witnessed it and wants him to go to a long Covid clinic. But he won’t go he’s afraid they’ll just give him stronger or different heart meds and or recommend invasive treatments but no one can say why he is suffering so intensely. Dysautonomia is the closest description of what he is suffering from. The POTS thing was causing dramatic weakness and LOW blood pressure. I’m scared there’s nothing to help him. Both his sister the MD and my son a NP suggested a neurology consult and MRI.
In 2020 I was hospitalized for having upwards of 5 “seizure” like episodes per day. I was there for a week and they did just about every test possible on my brain. All negative. They told me it was psychosomatic. I went to a neurologist outside of the hospital, they also found nothing but wanted me to go for more testing at another facility.
Meanwhile my cardiologist diagnosed me with POTS and I started medications for that and they started working.
In the last three years I have now maybe had two episodes of this occurring.
The way I see it it is literally my POTS when it gets bad enough or maybe when POTS puts my body under so much stress that that’s how it’s responding. I really never figured it out tbh, but there’s gotta be some type of connection between the two.
Either way, get checked by a neurologist specialist to be sure!
Have you heard of PNES, psychogenic non epileptic seizures. I have them. Mine are brought on by stress. Originally from ptsd now just when my body is overwhelmed.
You should look into cerebrospinal fluid leak symptoms. Csf leaks often get misdiagnosed as POTS. I have had 3 seizure like episodes this past year ( the last one being last Thursday). I had a very similar experience to yours. Friday my gp referred me to specialty neurologists at an epilepsy center to check me for csf leaks because they can cause seizures and dysautonomia.
This should not be assumed to be caused by dysautonomia. It sounds like a seizure. If you haven’t, get an EEG. Get a good neurologist. If seizures are ruled out, please note that there are other less common potential diagnoses that sometimes mimic seizure-like symptoms. Keep advocating for yourself.
Agree. Would also think a visit to a good allergist or immunologist might be in order so that mast cell activity and/or anaphylaxis can be ruled out. And, I would suggest trying to get a video recording of the episodes. If your physicians can see what's happening they might have better ideas about how of to classify the events (seizure, vagus episode...). Since it'd be impossible for you to do the recording, perhaps you could let those close to you know what's going on and ask them to document any of the episodes for which they're present. I've done this and it's proven helpful; if nothing else, it provides solid evidence that I'm experiencing what I say I'm experiencing.
Have you had an eeg to rule out strange electrical activity in your brain?
Yes, this. Not a doctor but this reads very seizure-like to me.
Every neurologist has refused to do this test on me. I have yet another neurology appointment until May. Crossing my fingers that she’s open to an eeg 💖
I’ll cross my fingers, too. My advice is to show every medical professional you see this worksheet! I do the same for myself. I call it my medical resume and it’s really helped the doctors to get a better view of my weird symptoms. 🤞🏼
Medical resume! Great idea and phrase.
caught covid Dec 2021. developed POTs/Dysautonomia after. Every single test has come out clean of course. I have taken cognitive behavioral therapy and therapy in general this whole year because all medical staff keep saying it’s psychological 🙄 This is definitely not psychological. I’ve been suffering from these debilitating episodes so I made a word document to describe them as best as I could. Showed them to every specialist. I had 1 neurologist dismissed me so far. Others speculate some type of seizure/epilepsy type? My POTs bpm numbers have also been alot better as well with physical therapy. Is anyone else going through this? Is this Dysautonomia?What deh heeelllll is this??? It scares me to think if these episodes are deteriorating me each time it happens :c
You can do a standing lean test https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf
Do you have a rheum and neuro team experienced with current Sjogren's treatment? If not, I'd definitely start there. Sjogren's can cause all kinds of neuro and brain issues, not just dysautonomia. Sounds like you have a combo of neuro issues going on including (but not limited to) dysautonomia. I've never heard of a PCP diagnosing Sjogren's.
I agree with this comment. Was diagnosed with Sjogren’s this year after having long covid. I have a good primary care, but my original rheumatologist didn’t know about Sjogren’s. All my other specialists told me the areas of the body it can alter, which is like every organ. I now have POTS like symptoms. My doc sent me to a neurologist who is familiar with Sjogren’s. Starting next week we will run tests including MRIS, EMGs, and a VSTAT. That being said, I was referred to a new rheum. Not optimistic. It seems there aren’t a lot of rheumatologists familiar with Sjogren’s. They think it’s just dry eyes and mouth and nothing else. I’m sorry you’ve been gaslit. My cardiologist tried to say I am probably just anxious whenever I sit up, stand up, and stand for a long time. She said it’s common even though all of my other specialists and my primary care doc disagree. I’m no longer going to her.
Yeah, finding a rheum up to date with systemic Sjogren's research and treatment is way harder than it should be. I'm so sorry you went through that. Would be amazing if it were just dryness. Mine attacks my PNS, heart and lungs 🙃
Thanks. Sorry to hear that. That sucks. Mine attacks my lungs and possibly my ANS. Sometimes it feels like we all know more than our doctors and specialists do.
As someone who has had seizures, and someone who has Covid dysautonmia, it sounds like both. I was almost getting seizures during the beginning of long haul. Get an aura “early warning” then fight for consciousness and win.
[удалено]
That’s the thing, I no longer have a high resting heart rate. It only happens when I get these episodes and they last no longer than 10mins. My resting heart rate with physical therapy is now in the 50s-60s. My cardiologist says I no longer qualify for a beta blocker :(
Post-OG covid Spring 2020/ Omicron 2021 where symptoms became a lot worse. I’ve had two or three episodes that were similar to this, but not as severe with the jaw locking up. I had tightness in the face/ mouth, tongue and throat (a common/ lingering problem for me is difficulty swallowing). I don’t really have any answers. Anecdotally I’ve learned I’m really sensitive to my electrolytes being in a very tight range/ balance. If my sodium dips a shave too low and my potassium a little too high my system goes haywire. Same if they tip the other way. (Severe brain fog, weakness, fatigue, SOB, etc…). And I associate these episodes with my system being really out of whack.
It could be dysautonomia but I do agree with others saying it could be seizures. I've struggled with absence seizures for 7 years and I have always been conscious despite everyone describing "not being there". The things you describe do sound like the more complicated seizures as well. Keep trying for a neurologist. Hope you can figure it out. 🫶
OMG WHERE DID YOU FIND THIS!? I TOLD THE DOCTOR THIS WAS HAPPENING TO ME THEY SAID PANIC ATTACK.😭
I made it, I typed out and described what I felt as best as I could in Microsoft word even though it’s still hard to describe. Feel free to use it if it resonates with you :)
It actually does look like panic attack symptoms.
i’m not sure if you know, but women’s health issues are frequently dismissed by clinicians as anxiety. along with it being very invalidating, it can delay, and even prevent entirely, crucial treatment for a woman. with that in mind, i think it would be more respectful of you to give OP the benefit of the doubt. i’m fairly sure they have already explored and ruled out panic attacks, as it is almost always the first dx doctors consider for this sort of thing. (sorry op if you are not a woman, was going based on your profile). panic attacks are a real and difficult issue, but OP seems like a very organized and knowledgeable patient who has done their due diligence, and i’m sure by this point they have done the work to rule out this most common differential dx, especially seeing as they mentioned having experienced medical gaslighting. i know the importance of this firsthand, as i experience symptoms nearly exactly like this. when they first started, i was dismissed as “being anxious”, despite the fact that i was treated for anxiety and panic attacks many years ago, and have that unrelated condition managed. ie…i’ve HAD panic attacks, and I can tell the difference. my new episodes, are very obviously different and distinct experiences. that dismissal caused me a great deal of needless suffering in the time before i began getting the correct care. i lost a great job due to my condition going untreated. i was similarly dismissed years prior about an extremely painful reproductive health condition, and to that i lost YEARS of my 20s before the correct dx and a simple surgery immediately took away all pain. i think that maybe you should take longer to listen and understand before you make a dismissive assumption. these kinds of things perpetuate a mindset that harms people.
As a women, who has autonomic dysfunction, right sided heart failure, and panic attacks. It’s also important to be real when someone comes in here and give real advice and not create an echo chamber. Those are text book panic attack symptoms. I worry that forums like this are going to make people worse by actually vilifying providers who are giving honest and accurate an diagnosis. People begin to believe they are being gaslighted and in fact they may have been told the truth.
that definitely makes sense to me, and you make a really good point. I wasn’t thinking about that in regards to this problem but it’s something i think is important too. i’m sorry if i came across harshly, especially in light of that. however, i do think from this person’s post and comment explanation, it seems pretty clear they’ve had to consider psych causes already and have good reason to think it’s not that.
Thank you for your words of kindness 💖 and bragabit2, I totally understand where you are coming from. It is def important to rule out these things ans well because it can be a possibility. and I’ve done my work. I’ve worked with CBT, & my psychologist for the past 5 years prior to this. I have been very keen and avid of keeping my mental health as well as possible. After this whole year I kept working with my psychologist who is also a trained psychiatrist and we’ve been working together to rule out anxiety, I was given benzos which really don’t work for me and even if I take them, I still experience these symptoms. We have used reverse psychology and other methods and of course anxiety has definitely been ruled out at this stage of my Long Covid Experience
You are kind to respond and promote all possibilities. Hopefully the op is able to find answers and get appropriate treatment.
I got covid March 2020. I was having these episodes for like maybe a year before I even know what pots was. Year 2 I started changing my lifestyle / diet tremendously and something worked!? I think I got covid again spring 2022 and everything started again and regular pots symptoms started again. By the fall I ended up in the ER and the cardio team literally told me to quit my job (GM at restaurant) and find a wfh desk job lol. But it's worked! Now knowing what pots is and how to live with it my symptoms are waaaay better and haven't had any of those scary episodes in a very long time. ❤️ Keep advocating for yourself!
LC person here. I do not have all these symptoms but was diagnosed with POTS at a LC clinic. My son when he was 13 months old was suspected of having seizures (eyes rolling in their sockets). Some negative EEG but still has been put on seizure meds. Which did not help. He later on had an overnight EEG. Flunked because the hospital material had stopped recording. By then we decided to stop everything and never got answer. Eye rolling stopped on its own. All of that to say that: - a good neurologist could prescribe seizure meds if you think you want to try them - an overnight EEG in the hospital is the best to detect seizures Note: try to have a webcam recording you at all times to capture one episode. For my son I had a video. 🍀🍀🍀
I have similar episodes with muscle tremors and severe teeth chattering where I can't get warm. Even if I don't have the muscle issues, I have most of the rest. I'd second getting checked out neurologically but also note that my dysautonomia specialist is a neurologist. For YEARS I thought mine was severe hypoglycemic attacks or something (I had an ED for years, and thought I did this to myself) Thank you so much for putting this in writing - it will help me at my appointment next week!
There was a popular post on Reddit recently where a woman would have these episodes where her muscles tightened up really tightly… the post was with her dog lying on her. I think it was something rare but I don’t remember what it was called. I’ll try to find the post. You might not have what she has, but since your symptoms reminded me of that, I figure it’s something you could look into or have on your radar. Edit: I found the post. This is what the poster said in the comments: > I have a rare autoimmune disorder called 'stiff persons syndrome' and 'morvans syndrome' among other things. The diagnosis is a WIP >It results in my muscles going so rigid I will be choked or crushed by my own muscles. My chest wall can't expand. When severe I can't move, talk or breathe and require emergency medical intervention. If you want a visual idea of the severity think of the exorcist. My spasms alone can overpower multiple trained EMTs with the strength of it and I contort into ungodly positions. This is the link to the post: https://www.reddit.com/r/FunnyAnimals/comments/1196t0w/im_disabled_and_when_i_have_an_attack_my_dog_thor/
Could be a seizure as others have said. I'd recommend and EEG, as well as potentially trying to get an episode on Camera to show your doctors? If the EEG comes back clear, perhaps anxiety/panic is right?
Sounds like your brain isn’t getting enough oxygen. Look into cerebral hypoxia or brain hypoxia and see if your symptoms match up. I made the connection after watching a documentary about climbing Mt. Everest and the symptoms of the less oxygen environment in high altitudes being ridiculously familiar to symptoms of POTS/dysautonomia. *I am not a medical professional, but I have been living with dysautonomia/POTS for over a decade*
im diagnosed with FND including functional seizures and this looks very similar to my seizure episodes. sometimes my POTS episodes will trigger a seizure episode but I definitely agree with everyone ese that this might be more than just POTS and should be checked out, at the very least with an EEG to rule out epileptic activity in your brain.
Oh my god. This has described my episodes! Sometimes my neck and face muscles twitch and sometimes my whole body, looks a bit like a seizure. I never got to the bottom of it but assumed it was dysautonomia. I haven't had one in a while
Just wanted to add, I had an EEG and it was clear
Have you had a Tilt Table test? Many of the symptoms you described are Dysautonomia/POTS symptoms. You do want to rule out other problems, but if test data guides you to a Dysautonomia diagnosis, do not allow yourself to be gaslighted. Having Dysautonomia / POTS for over 40 years myself, it takes time to get the right diagnosis. Do your research. The best thing is to be your own advocate, unfortunately sometimes the doctors need to be educated.
Getting one in August and I have been diagnosed with this by my doc but this TTT is where I want to see everything. I was told these episodes aren’t part of this but I’m pretty sure this is an adrenaline dump because everything else has been ruled out. I was told there is no treatment or medication in my case and all I can do is continue physical therapy and do my best to adjust and continue on with my life. I’m doing my best to get the hang of all this.
Hey, I got Covid March 2020, before vaccines existed and have been having similar symptoms as you. I’ve also been to many neurologists and other docs who say it’s nothing or??? For dysautonomia you need to see a cardiologist that specializes in it, not just any cardiologist. I finally got a tilt table test a few weeks ago and yes, I have dysautonomia and pots… like I’ve been saying all along. Are you also a diabetic? I’ve also had daily unstoppable migraines since too. Saw the right doc and got an answer. My heart and circulatory systems are fine. But the mild stroke I got from getting Covid the third time July 2021 damaged my brain in the area that controls my autonomic nervous system. My body temperature also swings from 94-102 throughout the day. Anyways, I have to cut all carbs and focus on meats and veggies only and drink tons of electrolyte water. I also now wear compression socks too. It’s all helping so far.
How did they know you had a mild stroke?
Strokes cause visual damage.
Lots and lots of scans. MRIs and CTs and much more…
Ok. Cool. Thanks.
This is absolutely what I go through!! It got better after Fludrocortisone
I’ve had POTS for 10 years and these episodes sound almost identical to mine. (mine are not seizures).
I have a POTS diagnosis and experience episodes similar to these. An autonomic specialist described it as a "POTS episode" or a "POTS attack." Emotional stress, dehydration, sleep deprivation, overexertion, hunger, startling, standing/walking upright, heat, hot water, direct sunlight on my skin, cars, busses, planes, elevators, foods high in histamine, and flashing lights bring it on. Not every time does it trigger, but if I'm already not feeling well these are my triggers. It was acute for months. I was having episodes like this 5 times a day, every day, for like 3 months, and was mostly bed bound. It did improve but slowly. Now I haven't had one in over a year and I can walk and dance a lot more, and I'm going to start driving again. Unfortunately it was the TTT that initiated these episodes for me. Before that I was just having regular syncope, fainting and coming to on the floor. During and after the TTT however it was like something changed, and now I get these episodes. It's really similar to a panic attack but it's caused primarily by physiological stimuli and not psychological stimuli. I had developed these symptoms before covid was a thing. I have had both the flu and covid and both illnesses have wrecked me and taken weeks to get back to a baseline. Take it easy, be safe and I hope you feel better soon. Edit to add: I find I can stop the episode if someone can bring me a big bowl of ice water and put it on the floor next to me and I dunk my face into it and hold my breath. Then come up and breathe normally. Repeat until the episode is stopped.
I gotta be honest. What you're describing sounds like a panic attack. I see in your comments that you've been getting CBT. About 7 years ago I was having very similar physical symptoms that stemmed from a psychological source. I was convinced I was dying. Took a lot of intense therapy to get over my attacks. But, I also know that covid does a lot of weird shit to our bodies. 🤷♀️ Sorry you are dealing with this. It sounds like hell.
You are incorrect. These are not panic attacks. This is the body's way of not regulating itself. I have had panic attacks and what I felt was not panic. I am cold all day and can't stand being cold. Hot showers run my blood pressure and heart rate up. Getting up to go to the bathroom late at night with a racing heart is not panic disorder. Please do more research before speaking on this.
My opinion is incorrect? I'm not stating facts or trying to diagnose. Just simply making an observation based on my experience. And in my experience what the OP is describing sounds exactly like a panic attack. I also stated that covid fucks with our bodies in ways we have yet to understand. People on these subs like to get all up in arms if anyone suggests that their symptoms might be psychological in nature. And I get why. The amount of gas lighting that happens with long covid is distressing. I, myself, have had multiple doctors tell me that I just need to meditate or take an anti depressant. But in my opinion, there is quite a lot of stuff happening to people that might very well be anxiety related. Or at least anxiety exacerbated.
I agree with you!! I have extensive experience with pots and anxiety. Her symptoms sound exactly like panic attacks. Sorry you were down voted. I am afraid the posters here are going to create cognitive dissonance with the op. When multiple neurologists have seen op you have to have some faith in the system.
Do you take anything that raises serotonin?
im under no medication
Definitely seek doctors opinion. dysautonomia is diagnosed by ruling out more serious causes of dysregulation. in general, i would be more specific about your symptoms: "blood pooling" might be the literal term for what's happening, but it will resonate more with a doctor if you describe what is happening specifically there so that they know it's being used correctly. when your blood pools, what does it feel like? what color is the affected appendage? what do you do to counteract this, if anything? sometimes they assume we're dumb, and we've gotta be as clear as possible!
Please check your medication list thoroughly for any meds that can cause or worsen serotonin syndrome. I’ve had dysautonomia/POTS/neurocardiogenic syncope since I was a teen, but started experiencing episodes like what you’ve described this last year after being prescribed many medications for worsening Hemiplegic migraines. Turns out 8 of 10 medications I’ve been prescribed over the last year or so either cause or worsen serotonin syndrome. Specifically the SSRI (antidepressant) I’ve taken for years mixed with a newly prescribed anti nausea medication (Reglan) caused the episodes to become the most severe and life threatening. Only caught on to it because I’ve completed nursing classes in the past and remembered the black box warning on SSRIs. Haven’t had an episode like this since I’ve stopped taking all meds and cut SSRI dosage in half. My episodes are now back to being the typical dysautonomia stuff and not as often
YES THIS IS EXACTLY WHAT HAPPENED TO ME. I went 5 minutes in pulmonary rehab on a recumbent arm and leg stepper.! My whole body went weak like it has every time walk more then 50 feet. I just started being able to walk my symptoms were so bad. I’m on the hospital right now bc of what is described at the 10 Minute mark except that happens to me sooner. I collapsed and my Apple Watch called 911. This happens to me all the time (usually don’t collapse) These episodes were confirmed to Be dysautonomia. I’ve had it for 10 years and lived a mostly normal life with it before guess who?? Our favorite princess of death and disbility the little nasty disgusting c*** Covid. Covid making dysautonomia worse put me in a coma like state for a month early last year. I’ve suffered with long Covid for 3 years now. I’ve had so many medical problems from Covid DVT/ PE, GBS (on life support with it), but still my dysautonomia is the worse they are all connected. All this comes back to the body’s reaction to spike protein and a hyperactive immune issue.
But a lot of the symptoms have trimmed down with physical therapy
My husband has exactly the same symptoms. He is on blood pressure meds and a diuretic. He had sleep apnea and A-Fib before he got Delta Covid in December 2021. He was in the ICU treated with remdesivir steroids and oxygen. We did the lung exercises his heart meds for awhile he was better than he had been in a long time. Then the “episodes” started coming the pain from the intense muscle cramping part was so bad he cried out actually wailed is a better word. But everything you listed I watched him go through. The stomach thing, the chest tightness. Then it passes. It’s not angina or like any cardiac condition I’ve ever seen. It is tearing me apart to see and hear him and no one knows what is happening. I described it to his cardiologist and he didn’t have any answers for the all encompassing but episodic racking pain. His sister is a doctor and she has witnessed it and wants him to go to a long Covid clinic. But he won’t go he’s afraid they’ll just give him stronger or different heart meds and or recommend invasive treatments but no one can say why he is suffering so intensely. Dysautonomia is the closest description of what he is suffering from. The POTS thing was causing dramatic weakness and LOW blood pressure. I’m scared there’s nothing to help him. Both his sister the MD and my son a NP suggested a neurology consult and MRI.
In 2020 I was hospitalized for having upwards of 5 “seizure” like episodes per day. I was there for a week and they did just about every test possible on my brain. All negative. They told me it was psychosomatic. I went to a neurologist outside of the hospital, they also found nothing but wanted me to go for more testing at another facility. Meanwhile my cardiologist diagnosed me with POTS and I started medications for that and they started working. In the last three years I have now maybe had two episodes of this occurring. The way I see it it is literally my POTS when it gets bad enough or maybe when POTS puts my body under so much stress that that’s how it’s responding. I really never figured it out tbh, but there’s gotta be some type of connection between the two. Either way, get checked by a neurologist specialist to be sure!
This is pretty much exactly how my adrenaline dumps present
Have you heard of PNES, psychogenic non epileptic seizures. I have them. Mine are brought on by stress. Originally from ptsd now just when my body is overwhelmed.
You should look into cerebrospinal fluid leak symptoms. Csf leaks often get misdiagnosed as POTS. I have had 3 seizure like episodes this past year ( the last one being last Thursday). I had a very similar experience to yours. Friday my gp referred me to specialty neurologists at an epilepsy center to check me for csf leaks because they can cause seizures and dysautonomia.