So, I've been watching this forum closely over the past few weeks and felt like ot was time to add my story as well.
Back in June of 2021 I was sick for 7 weeks. Initially they thought it was bronchitis and now it is thought to have been the Delta variant of Covid. Every since I have been dealing with heart issues. My heart would randomly race as high as 170bpm, and I would get dizzy and lightheaded. These episodes were pretty rare and initially doctors thought they were random "panic attacks". November of 2021 comes around and I'm very sick for 2 weeks again. This was thought to be the omnoicron variant. Fast forward to January of 2022 and I have an episode of heart racing up 170bpm again, blood pressure of 201/73, light headed and dizzy.
Doctors still claiming I was all of a sudden a very anxious person decided to put me on daily anxiety medicines. After several weeks of many symptoms and doctors finally realizing it's not anxiety I was taken off these medicines. Here's where it's interesting, day 1 of taking these anxiety medicines up until today I have extreme "disorientation/unsteadiness" feeling. It's not spinning but the way I describe it is almost like my brain is lagging to where my body thinks I am and it leaves me unsteady. I have had several EKGs (clear), echocardiagrams (clear), visits with the ear doctor (clear) and now I'm recommended to a long covid clinic.
Has anybody else dealt with this combination of issues and had any degree of alleviation? I'm a 22 year old who played a college sport and was extremely active and now I can barely even go to the grocery store and haven't driven my car in months... any responses are welcome and thanks in advance!
@alw699 I have lightheadedness and "dizziness" all the time now. Sometimes I swear I will fall into a coma or have a stroke, but of course it never happens. Previously I had the panic attack once. That was out of the blue for no reason, on my first day of long covid. It's part of the disease process, not psychological nor emotional. My cardiac symptoms are not tachycardia but random PVC's that are scary as hell. I had the hyper adrenaline type feelings, (which you might perceive as anxiety for no reason) for some time but that has abated for the most part. That is also organic disease, not psychological. I was so jacked up with that hyper fight or flight feeling I couldn't sleep and thought I had a pheochromocytoma! Didn't. It is part of long covid disease. It's a roller coaster of symptoms that come and go across time. Now mostly dizziness/ lightheaded, bad tinnitus, and weird headed like meningitis.
@mguerramd I have the exact same symptoms
my story:
32 female, ER nurse. Hx of pvcs/pac but not enough for an ablation. Worked myself off meds and just breathe through episodes. I’ve worked throughout Covid as a travel nurse all over the country. Never having been diagnosed, I had the JJ vaccine in April 2021, had my antibodies tested earlier this year and have plenty so I def had Covid at some point. May 2021, Arrived to Colorado, around summer time I felt off, was told it’s elevation sickness and I agreed. Symptoms were mostly just feeling lightheaded really, and some fatigue/SOB or didn’t account for the palpitations because I had already been diagnosed with them. After being here for months I saw an NP again, was told maybe it’s anxiety. Ok, makes sense I’m stressed, working the ER, covid stinks, it is what it is. Then finally in Nov I had a talk with her and said it’s not anxiety and it’s not elevation. There’s no way I’m this sensitive. It’s been several months at that point. In Dec 2021 Had an MRI, blood work done, iron levels checked, ruled out DM, everything came back normal. Went on a couple vacations at sea level and still the same. One day in Mexico I had to lay down and miss dinner because I just felt dizzy along with this impending doom. I laid down for an hour plus, and then felt better. Feb symptoms started to get worse. Palpitations, my heart rate would bounce to 120 doing super easy tasks, bouts of chest pain and most of all dizzyness and vertigo and feeling an overall uneasiness like my fight or flight was going but I was just laying there watching tv. Sent this NP a message saying I’ve been up on hydration, been to sea level with no changes. Something’s gotta give. She referred me to a cardio md to be rules out for pots. At this point I’m having “attacks” daily and I ended up quitting my travel nurse assignment early. I couldn’t even get through a shift without needing to sit or feeling on the verge of a pain in attack because of all the symptoms. I’m an ER nurse, trauma, you name it I’ve done it. I’ve never had issues with keeping my Cool before. I quit that and took a month and a half off, I had saved enough I was able to do so. No kids. I just laid there, everyday, pretty much the same time these bouts of the dizzyness came on. Everything else was evenly dispersed throughout the day but I felt pretty well by 5pm. I had already planned a vacay to PR intend of April, went had some days better than others. On one of my excursions I was pushed to the limit and ended up having blurry vision for a bit, 15 seconds. Have had it before last year around when it started and had my vision checked, was ruled out for anything crazy and since I had an MRI in Dec, was told it’s just normal stress induced. Took a job working as a remote nurse, which kills me to do pride wise. I’ve put on weight. I can’t fathom doing any cardio, I have some days where I feel well enough to do sedentary exercises, lifting on the machines. I tried walking on the treadmill and felt like I’d pass out. I saw this cardio md a couple days ago. Says he thinks it’s more Covid long haul than pots and that pots is very vague. Didn’t sound like he knew much about it. Scheduled me for a stress test, Rushed my whole appointment and honestly I should’ve known better but he left the room and I was like I feel like crap I just wanna go home instead of asking him to T least do orthostatic vitals. The scheduler called me and said they have no appointments until July 2022. Which doesn’t help at all.
It’s honestly changed my life. I don’t even drink anymore for fear of it making it worse. Whether it’s long haul or pots. Both have limited research and treatments are kind of exploratory. It’s going on almost 9 months. I feel for everyone here. Thankfully my significant other supports me when I say I feel like I’m going crazy and making this up since my tests are normal!
I have been taking 1000mg ginger root on and off, it’s a natural remedy for vertigo. It works for me most of the time. Otherwise I take a nap if it’s my day off or I work through my breathing exercises if I’m at my desk, which is at home so I think that lessens the anxiety knowing I can just lay down real quick if I need to. I’m itching to get back to my old life, hiking and traveling, I just have no drive to do much mentally and physically. We went camping last weekend and I had to lay down for two hours at some point, I cried. Felt like a burden.
If anyone needs support or has questions about my journey feel free to send me a message on instagram, we can compare remedies and such! This is new and there aren’t enough studies being done so let’s beat it! Best wishes to everyone!
instagram: @mandaliz10
@alw699 , it’s like there’s no rhyme or reason with this crap. I’ll go a few days without lightheadedness and balance problems then bam it’s back. I’ve been to pcp, ENT, ear doctor, & neurologist. MRI’s scans and now racking up medical bills and nothing. Showing up normal which I’m so grateful for, but that normal isn’t helping me end this freakin nightmare. Brain fog & I've noticed that when I’m outside walking it almost feels if I’m not getting oxygen to my brain. The back of my head really hurts too. But I had Doppler scans and of course they show up normal? Like I said no rhyme or reason with this long covid crap. Best of luck
@mguerramd I feel the same way about relying on God. I hope you are healed ASAP.
@smitlak Can you tell me please how much mg did you drink of Ginko Bilboa?
I am wondering the same thing. I seriously have the EXACT same type of symptoms described here. I will be talking to a NEW ENT tomorrow, and will reference this page as something I discovered. I am hopeful he has seen this before after so many years and have a few answers. I will ask about GB, or Tanakan.
God bless all. This is just a rough way to live!
Hi, can you please tell me how much did you take( in mg please.) If you can remember. Thank you
FYI all, my second opinion ENT suggested me to get a more in-depth vestibular evaluation. Apparently it takes 3 hours and has all kinds of crazy electrodes to determine movement. I called them to schedule, and they were booked for a month. I asked if he had people in for Covid, he laughed and said many. They were doing a study on the patients to learn more. He actually said they think they are at a 85% recovery rate for those with this Covid dizziness stuff.
Second, he sent me off to get an MRI as well. Based on the others here, I expect it to be clear, but who knows. He didn't want to do a bunch of stuff when that was a quick way to check for other things. I did it yesterday, have not heard back yet. I am pretty anxious about that, but I am trusting God has it in his hands.
I will update you all!
Parts of this sound very similar to me.
I had a what I think was Covid 2~ months ago.
The actually bout with Covid wasn’t terrible, I didn’t even get tested because I didn’t think I had Covid at the time.
About 4-5 days after I started to notice what felt like a “lag” between my movements and how my system should be responding to them.
I have now been to a general practitioner, ENT, ER (had bad episode+ anxiety one time) and basically all told me the same thing.
“It should resolve itself.” Thankfully I was at least referred to a vestibular specializing physical therapist and have been doing exercises for the last week.
I’m not sure how to describe how it feels other than when I’m in bed sometimes it almost feels like I’m laying in a water bed (I do not have a water bed) and then when I’m walking it almost feels like I’m experiencing a personal earthquake and the ground just feels unsteady.
Everything online says that vestibular rehab really should help so I’m hopeful for that at least.
I too have completely cut out drinking and have to really laser my focus in to get a workout in.
Hope you an everyone else going though this improves soon.
also:
(I haven’t done any extensive testing but based on what everyone else is saying here it sounds like I would just be running up a medical bill for a brief moment of relief.)
And I’m 28, 6’2 190, and I’m pretty in good shape. I usually get over things quickly but this is just hanging around.
Brain MRI was clear. Yet another one, clearly Covid is the cause here.
Wow! I cannot believe we are all going through this! I have gone through exactly what all of you have already mentioned. Here’s my story: had covid May 21, 2021 for 3 weeks and it was awful. Hit me hard. I had every symptom covid had to offer. I recovered and was back at the gym working out on 7/5/21 and slowly got back to my 5-6 days a week working out at BURN BOOTCAMP which are 45min intense workouts. Fast forward to October 2021 I got strep from my kids and it developed into a sinus infection which I have never had. Got put on an antibiotic by my primary dr and had my annual blood work done which came back perfect.
3 weeks later I woke up one day, first week in November, with a horrible headache and was lightheaded. There was no way I could go to the gym. So I increased my water intake and went to the chiropractor after my dizziness didn’t go away after 5 days. It didn’t help seeing the chiropractor.Then went back to my Dr. who did a bunch of tests and sent me to the ENT. There we did a balance and heating test which turned into a VNG test. All were perfect.
Off to the neurologist. Brian mri and carotid artery ultrasound requested (taken today) Dr thought my iron level were off from working out and being a female. Tested iron levels. They were perfect.
Off to the cardiologist. Echo test and 24hr heart monitor ( currently waiting results) I have been dizzy since the first week of November 2021! Nothing helps me. Dramamine doesn’t help. Melatonin gives me a sharp pain in my head the next day. I take vitamins and supplements to try to balance me out and keep me healthy.
I’m beginning to feel defeated and that no doctors know what’s happening to me. Nor can they give me anything for any relief. I am going to try going to physical therapy. They have a dizziness program that they offer. Hopefully I can get relief from that!!
I am so tired of feeling like this I’m not going to allow this dizziness to run my life anymore! I’m taking charge of my life again!
PRAYING FOR YOU ALL!!
Hi it’s been a while hope you are well any updates any improvements
@margaret2022 hello. I have since had another VNG which came back completely normal. So now the dizziness is not coming from my inner ear which was vestibular neuritis. So now I have no idea. I was told to continue PT. I started back In the gym a few weeks ago and just move slow and no my limits with fast movements or up and downs like burpees. I just stay down. I went to see an endocrinologist since I have A nodule on my thyroid but he confirmed it’s not causing any of my symptoms from my dizziness. So I decided to just deal and keep on keeping on. No one can explain it and I’m tired of trying to figure it out. Day by day is all I can do. Proverbs 3:5 trust in the Lord with all your heart and lean not on your own understanding!
@mguerramd I have the exact same symptoms
my story:
32 female, ER nurse. Hx of pvcs/pac but not enough for an ablation. Worked myself off meds and just breathe through episodes. I’ve worked throughout Covid as a travel nurse all over the country. Never having been diagnosed, I had the JJ vaccine in April 2021, had my antibodies tested earlier this year and have plenty so I def had Covid at some point. May 2021, Arrived to Colorado, around summer time I felt off, was told it’s elevation sickness and I agreed. Symptoms were mostly just feeling lightheaded really, and some fatigue/SOB or didn’t account for the palpitations because I had already been diagnosed with them. After being here for months I saw an NP again, was told maybe it’s anxiety. Ok, makes sense I’m stressed, working the ER, covid stinks, it is what it is. Then finally in Nov I had a talk with her and said it’s not anxiety and it’s not elevation. There’s no way I’m this sensitive. It’s been several months at that point. In Dec 2021 Had an MRI, blood work done, iron levels checked, ruled out DM, everything came back normal. Went on a couple vacations at sea level and still the same. One day in Mexico I had to lay down and miss dinner because I just felt dizzy along with this impending doom. I laid down for an hour plus, and then felt better. Feb symptoms started to get worse. Palpitations, my heart rate would bounce to 120 doing super easy tasks, bouts of chest pain and most of all dizzyness and vertigo and feeling an overall uneasiness like my fight or flight was going but I was just laying there watching tv. Sent this NP a message saying I’ve been up on hydration, been to sea level with no changes. Something’s gotta give. She referred me to a cardio md to be rules out for pots. At this point I’m having “attacks” daily and I ended up quitting my travel nurse assignment early. I couldn’t even get through a shift without needing to sit or feeling on the verge of a pain in attack because of all the symptoms. I’m an ER nurse, trauma, you name it I’ve done it. I’ve never had issues with keeping my Cool before. I quit that and took a month and a half off, I had saved enough I was able to do so. No kids. I just laid there, everyday, pretty much the same time these bouts of the dizzyness came on. Everything else was evenly dispersed throughout the day but I felt pretty well by 5pm. I had already planned a vacay to PR intend of April, went had some days better than others. On one of my excursions I was pushed to the limit and ended up having blurry vision for a bit, 15 seconds. Have had it before last year around when it started and had my vision checked, was ruled out for anything crazy and since I had an MRI in Dec, was told it’s just normal stress induced. Took a job working as a remote nurse, which kills me to do pride wise. I’ve put on weight. I can’t fathom doing any cardio, I have some days where I feel well enough to do sedentary exercises, lifting on the machines. I tried walking on the treadmill and felt like I’d pass out on it. I saw this cardio md a couple days ago. Says he thinks it’s more Covid long haul than pots and that pots is very vague. Didn’t sound like he knew much about it. Scheduled me for a stress test, Rushed my whole appointment and honestly I should’ve known better but he left the room and I was like I feel like crap I just wanna go home instead of asking him to T least do orthostatic vitals. The scheduler called me and said they have no appointments until July 2022. Which doesn’t help at all.
It’s honestly changed my life. I don’t even drink anymore for fear of it making it worse. Whether it’s long haul or pots. Both have limited research and treatments are kind of exploratory. It’s going on almost 9 months. I feel for everyone here. Thankfully my significant other supports me when I say I feel like I’m going crazy and making this up since my tests are normal!
I have been taking 1000mg ginger root on and off, it’s a natural remedy for vertigo. It works for me most of the time. Otherwise I take a nap if it’s my day off or I work through my breathing exercises if I’m at my desk, which is at home so I think that lessens the anxiety knowing I can just lay down real quick if I need to. I’m itching to get back to my old life, hiking and traveling, I just have no drive to do much mentally and physically. We went camping last weekend and I had to lay down for two hours at some point, I cried. Felt like a burden.
If anyone needs support or has questions about my journey feel free to send me a message on instagram, we can compare remedies and such! This is new and there aren’t enough studies being done so let’s beat it! Best wishes to everyone!
instagram: @mandaliz10
Hi, hope you feel better! I didn’t understand a little - exercises while sitting and on a treadmill were prescribed to you by a doctor? Did he tell you how to do it right? I'm afraid to exercise when I'm alone because it can make me dizzy.
I tried a hyperbaric treatment but even though I'm not really claustrophobic, and the chamber was completely transparent, it freaked me out. The thing is, you can't let yourself out, someone else has to do it and to boot they have to depressurize it slowly before they can open the chamber. Plus even though I'm a scuba diver and a pilot, I didn't manage to control my ear pressures properly. So that was a bust. My lightheadedness persists to varying degrees every day, sometimes I'm certain I will pass out or fall into a coma. Sometimes it's mild. Turning my head sometimes makes it much worse and sometimes only a little worse. But it's always there, along with raging tinnitus. The hyper adrenal fight or flight feelings have passed. I get random bouts of pvc's/ palpitations. I used to ride my bike 100 miles, I couldn't go around the block today. I can drive and work but it's extremely stressful. Another weird thing is I'm super emotional and fall in to spells of crying all the time. Uh, that's not me. I think that is the disease, not my reaction to it. It's month 18 of post covid syndrome.