Hi! I’m just seeing your response just now as around June I banned myself from dwelling on my symptoms and thankfully the second half of 2022 was actually 80% unproblematic. I’m back now after a return of heavy-headedness/poor balance in the past week so just thought I’d check into the forum again. Found a vestibular conditional called PPPD today which seems to perfectly describe my symptoms in terms of balance.
So sorry I saw your response so late but it’s very interesting that you also had involuntary deep breaths. I’ve not had one since I wrote my original post and I think they’ll always remain a mystery to me.
At the moment my issue is balance and periodic waves of heavy/aching legs which don’t disrupt activity but are so frustrating when I’m sitting down or in bed.
How’re you doing? I’m very interested as we seem to have had similar experiences.
All the best.
Hi! I’m just seeing your response just now as around June I banned myself from dwelling on my symptoms and thankfully the second half of 2022 was actually 80% unproblematic. I’m back now after a return of heavy-headedness/poor balance in the past week so just thought I’d check into the forum again. Found a vestibular conditional called PPPD today which seems to perfectly describe my symptoms in terms of balance.
So sorry I saw your response so late but it’s very interesting that you also had involuntary deep breaths. I’ve not had one since I wrote my original post and I think they’ll always remain a mystery to me.
At the moment my issue is balance and periodic waves of heavy/aching legs which don’t disrupt activity but are so frustrating when I’m sitting down or in bed.
How’re you doing? I’m very interested as we seem to have had similar experiences.
All the best.
yeah I’m beginning to think I have something that might have been worsened by the vaccine and now covid. I joined a support group for sscd superior semicircular canal dehiscence. And I match alllll the Same symptoms. My theory: I had possibly had an underlining medical issue likely thinning of my canals in my inner ear parts. And when I took both vaccines in the beginning I remember feeling odd dizziness and hyperacusis that only lasted for a day or so. Went about my life. Got the third booster December 2021. Got a uti a end of December into January. And this functional medicine doctor explained this part well on his YouTube video if there’s currently inflammation or toxins in the body the vaccines or viruses can push our bodies into over drive (inflammation) because I just had that stupid vaccine not long ago before my uti my body became inflamed. Because when I got that uti it presented different to me I had a snore neck like my head felt full and weird my upper back was sore my urine was extremely cloudy even through i was drinking water and I just felt nauseous I never experienced that and I didn’t think anything of it. Any so I took my antibiotics and by my 3 dose I had severe sore neck sore back head pressure very sore head and I felt weird I called the nurse said to continue and that it’s nothing take Tylenol Advil it’s only for 2 more days she tells me. So I listened. Which was stupid of me. I probably got Brian inflammation from those antibiotics it was macrobid which I’ll never take again. And so anyway time went on January 10th 2022 everything happened. Head pressure hearing sensitivity headaches everything else I listed before. Then got all the tests and nothing. Ears eyes blood ct mri. So the ct part is what I learned you can only diagnose sscd with a ct that slices images of less than 0.6mm…not 0.6mm or higher read that in a few articles. Also the other test is VEMPs (Vestibular Evoked Myogenic Potentials)
So I called the ct department and asked about the resolution of the ct and I was told 0.65mm. I said okay. So my plan is to get them to put it on a disc and have it sent to another radiologist to be read. And I gotta find a close hospital that has a better resolution of less than 0.6mm. When I got covid I remember before I was even positive I felt increased head pressure and I panicked like I began to have a panic attack my BP shot up and I immediately felt like brain fog. And that’s a sign of icp intracranial pressure. It’s not a life threatening emergency unless you start to vomit blurred vision pass out well I probably should have gotten seen. But I wasn’t feeling those symptoms but I knew my pressure increased and then later I developed a sore throat and then I tested positive. My nose was negative my throat was positive at about 15 minute mark. My sensitive hearing became more sensitive at a higher lever where I couldn’t stand myself talking. It didn’t hurt at this point. So I go through covid aches chills fever etc by the 3rd day I noticed my eye gotten worse on the left. By the 5th day I was okay. The week after I developed heart palpitations on exertion. Go away at rest. Still got ‘em. The second week I was having a coughing fit while sleeping and I woke up to get a drink I thought I was drunk I had vertigo I drank water and went to bed. That was 3am. I woke up at 630 and i rolled over and it came on pretty bad. But as soon as I got up it went away. Head pressure induced vertigo. I was experiencing head pressure too with covid when laying down I would have to get up at times. 3 days later I noticed my hearing sensitivity on my left ear was better. But I then began to get dizzy with sounds from that ear. And my voice talking made my head feel weird and my eye not work like it bounced a bit. Or danced -nystagmus. So then at this point I began to notice that I have sensitivity to my right ear now. And what I learned and read too in those chat groups or forums is that ppl with this condition experienced the same thing where Some had hearing loss, after their vertigo increased tinnitus but those were the ones that were battling this issue for years. And I probably only got some hearing loss because I’m not as severe as them. Yet. And those were the ones that got covid with sscd.
Initially I thought omg it’s an exacerbation of my symptoms from the vax but once I read and searched and read peoples experiences as I also had a chance to exchange messages with them and learned from then I realized yeah this is a high possibility that I do have this.
So when I see the ent at the end of this month I am going to show him my research and ask for a repeat CT well after the ct is re read. And probably another hearing test. I’m curious to see now if I have hearing loss on my left ear. And I’m gonna ask for a referral to Neurologist. Those are the ones that diagnose sscd. Also I noticed my tinnitus increased on my left I’m thinking it’s due to hearing loss for sure. I also experience head pressure when I hear loud sounds. those with hearing sensitivity and tinnitus and hearing loss I suggest you get a ct with sharp images of less than .06mm and get a referral to an neurologist. Because you never know. I still believe the vaccine had alot to do with this. And now covid. I was better off without the vaccine. But what can I do now. I was really bummed out after all of this occurred. I felt so depressed and just down and normally I’m a happy person it’s just really confines me to my home and when my family is home I’m in my room with ear protection. I said yup the rest of my life. I had a chat with my husband about all of this and he’s supportive. I felt worried about my children my marriage my family. Anyway, I went off topic had a big dear diary moment. Have a good night.
Still struggling:(
had my mri done on 12/9/22
no major change in my brain mri but one lesion found in my cervical spine mri. Believe it might be MS. My symptoms still persist. Fatigue,brain fog, tingly feeling, numbness, dizzy and balance issues. Thb he come and go and stress really triggers. I'm so scared I don't even know what to think anymore. I just want a plan and answer and then hope and I will fight like hell.
spinal tap is scheduled for next week and brain cervical and thoracic mri schedules for feb 5.
just praying for answers and effective treatment to get back to a new normal. Please anyone going through similar share your story or reach out to me.
my mito myopathy diagnosis seems either false or goes in hand with this. Not sure. I don't know all the supplements they put me on I kept having mild reactions to my lips with blow up, my nose, eyes and scalp would itch so I hade to stop taking them. They were high doses of nac, coq10, creatine, carnitine, folic acid. I've taken supplements before and never had a reaction. Thinking of going back on what I originally took but I'm scared of literally everything. Hope all you you are getting better. And pray we all figure this horrible thing out🙏🏻❤️
Anyone on here experience new, significant symptoms or issues a year or more after your last vaccine dose?
Anyone on here experience new, significant symptoms or issues a year or more after your last vaccine dose?
Yes, I thought over the summer I finally was past all this and over the fall and into this new year I have some of the same symptoms as before, some worse and new things as well.
I read a lot of forums, have been to tons of Dr's and it seems like there are so many "could be's"....I have heard of MS/Parkinsons/ALS/MCAS/POTS/Long Covid/FND and the list goes on and on and on and on....I think for me because of looking way too far into way too many neurological diseases, and reading comments of people thinking the worst of the vaccine and what it will do to people..and most of these possibilities having NO cure it has caused me to have such bad anxiety that it most definitely makes symptoms feel more intense and I am hypersensitive from that...one Neurologist mentioned parkinsons and since that appt I have been so nervous and constantly feel shaky and weak, that HAS to be nerves and anxiety. Does anyone REALLY know what is happening to us? Or is it just a guess based on what that Dr has seen or experienced...there is no test for us to see what the vx really did, only to rule some things out. I also think long covid and the VX have almost identical symptoms...right now my biggest concern is the muscle twitches that have come back along with a constant feeling of being weak and shaky and having mild tremors when using my muscles. I hope that just like before it goes away in time. Could it really just be a complete systemic reaction that affected everyone a little differently? Especially if it comes and goes? I had a massage yesterday with lymphatic drainage and she worked on some areas where my nerves were surrounded by a lot of inflammation (according to her).I personally am trying to make it a goal to stay off these twitter reports (some people really believe this vx was a way to kill people off, I don't know why I even read these things!!) and google searches of every known disease and just try to focus on being in the present until hopefully one day this goes away or someone comes up with an answer...I have heard people getting better, sometimes in months sometimes over a year, which is where I am at now...so for me I am just looking forward to warmer weather and better health in 2023 🙂
Anyone on here experience new, significant symptoms or issues a year or more after your last vaccine dose?
Yes, I thought over the summer I finally was past all this and over the fall and into this new year I have some of the same symptoms as before, some worse and new things as well.
I read a lot of forums, have been to tons of Dr's and it seems like there are so many "could be's"....I have heard of MS/Parkinsons/ALS/MCAS/POTS/Long Covid/FND and the list goes on and on and on and on....I think for me because of looking way too far into way too many neurological diseases, and reading comments of people thinking the worst of the vaccine and what it will do to people..and most of these possibilities having NO cure it has caused me to have such bad anxiety that it most definitely makes symptoms feel more intense and I am hypersensitive from that...one Neurologist mentioned parkinsons and since that appt I have been so nervous and constantly feel shaky and weak, that HAS to be nerves and anxiety. Does anyone REALLY know what is happening to us? Or is it just a guess based on what that Dr has seen or experienced...there is no test for us to see what the vx really did, only to rule some things out. I also think long covid and the VX have almost identical symptoms...right now my biggest concern is the muscle twitches that have come back along with a constant feeling of being weak and shaky and having mild tremors when using my muscles. I hope that just like before it goes away in time. Could it really just be a complete systemic reaction that affected everyone a little differently? Especially if it comes and goes? I had a massage yesterday with lymphatic drainage and she worked on some areas where my nerves were surrounded by a lot of inflammation (according to her).I personally am trying to make it a goal to stay off these twitter reports (some people really believe this vx was a way to kill people off, I don't know why I even read these things!!) and google searches of every known disease and just try to focus on being in the present until hopefully one day this goes away or someone comes up with an answer...I have heard people getting better, sometimes in months sometimes over a year, which is where I am at now...so for me I am just looking forward to warmer weather and better health in 2023 🙂
@kg1986: Thanks for the reply. I her you on the MS/Parkinson’s/ALS/etc. thing. I think too many doctors have recklessly thrown out those “possibilities” without definitive testing, etc. I have searched extensively and I don’t think I’ve seen any substantiated cases on newly on-set of any of those diseases as a result of the covid vaccines. Also, I too have made the mistake of doing way too much research via “Google University” over the past year, and that has only served to give me heightened anxiety. So now whatever I feel in my body I figure it’s due to the vaccine. I’m not a physician, but I honestly can’t imagine that any vaccine could continue to cause new issues/symptoms so long after injection. I can see initial symptoms taking longer to resolve, like the many neuropathy stories I’ve read about.
I do think trying to stop “doom scrolling” and researching every symptom and disease would help with the anxiety. For me I do have a couple of things that I still need to have investigated / tested, but I’m trying to stay calm about it and not to attribute it to the vaccine. I also, and in hind sight stupidly, decided to stop taking my SSRI in the middle of all this. That certainly didn’t help my anxiety levels. So I need to deal with that this year. Hoping to be able to get back on track this year and start to feel like my old self again. Keep me posted on your situation.
Hi! I’m just seeing your response just now as around June I banned myself from dwelling on my symptoms and thankfully the second half of 2022 was actually 80% unproblematic. I’m back now after a return of heavy-headedness/poor balance in the past week so just thought I’d check into the forum again. Found a vestibular conditional called PPPD today which seems to perfectly describe my symptoms in terms of balance.
So sorry I saw your response so late but it’s very interesting that you also had involuntary deep breaths. I’ve not had one since I wrote my original post and I think they’ll always remain a mystery to me.
At the moment my issue is balance and periodic waves of heavy/aching legs which don’t disrupt activity but are so frustrating when I’m sitting down or in bed.
How’re you doing? I’m very interested as we seem to have had similar experiences.
All the best.
also look at vestibular neuritis. From the vaccine can attack out inner ear parts and other parts of the body casing nerves to become inflamed.
Anyone on here experience new, significant symptoms or issues a year or more after your last vaccine dose?
Yes, I thought over the summer I finally was past all this and over the fall and into this new year I have some of the same symptoms as before, some worse and new things as well.
I read a lot of forums, have been to tons of Dr's and it seems like there are so many "could be's"....I have heard of MS/Parkinsons/ALS/MCAS/POTS/Long Covid/FND and the list goes on and on and on and on....I think for me because of looking way too far into way too many neurological diseases, and reading comments of people thinking the worst of the vaccine and what it will do to people..and most of these possibilities having NO cure it has caused me to have such bad anxiety that it most definitely makes symptoms feel more intense and I am hypersensitive from that...one Neurologist mentioned parkinsons and since that appt I have been so nervous and constantly feel shaky and weak, that HAS to be nerves and anxiety. Does anyone REALLY know what is happening to us? Or is it just a guess based on what that Dr has seen or experienced...there is no test for us to see what the vx really did, only to rule some things out. I also think long covid and the VX have almost identical symptoms...right now my biggest concern is the muscle twitches that have come back along with a constant feeling of being weak and shaky and having mild tremors when using my muscles. I hope that just like before it goes away in time. Could it really just be a complete systemic reaction that affected everyone a little differently? Especially if it comes and goes? I had a massage yesterday with lymphatic drainage and she worked on some areas where my nerves were surrounded by a lot of inflammation (according to her).I personally am trying to make it a goal to stay off these twitter reports (some people really believe this vx was a way to kill people off, I don't know why I even read these things!!) and google searches of every known disease and just try to focus on being in the present until hopefully one day this goes away or someone comes up with an answer...I have heard people getting better, sometimes in months sometimes over a year, which is where I am at now...so for me I am just looking forward to warmer weather and better health in 2023 🙂
@kg1986: Thanks for the reply. I her you on the MS/Parkinson’s/ALS/etc. thing. I think too many doctors have recklessly thrown out those “possibilities” without definitive testing, etc. I have searched extensively and I don’t think I’ve seen any substantiated cases on newly on-set of any of those diseases as a result of the covid vaccines. Also, I too have made the mistake of doing way too much research via “Google University” over the past year, and that has only served to give me heightened anxiety. So now whatever I feel in my body I figure it’s due to the vaccine. I’m not a physician, but I honestly can’t imagine that any vaccine could continue to cause new issues/symptoms so long after injection. I can see initial symptoms taking longer to resolve, like the many neuropathy stories I’ve read about.
I do think trying to stop “doom scrolling” and researching every symptom and disease would help with the anxiety. For me I do have a couple of things that I still need to have investigated / tested, but I’m trying to stay calm about it and not to attribute it to the vaccine. I also, and in hind sight stupidly, decided to stop taking my SSRI in the middle of all this. That certainly didn’t help my anxiety levels. So I need to deal with that this year. Hoping to be able to get back on track this year and start to feel like my old self again. Keep me posted on your situation.
@kg1986: Thanks for the reply. I her you on the MS/Parkinson’s/ALS/etc. thing. I think too many doctors have recklessly thrown out those “possibilities” without definitive testing, etc. I have searched extensively and I don’t think I’ve seen any substantiated cases on newly on-set of any of those diseases as a result of the covid vaccines. Also, I too have made the mistake of doing way too much research via “Google University” over the past year, and that has only served to give me heightened anxiety. So now whatever I feel in my body I figure it’s due to the vaccine. I’m not a physician, but I honestly can’t imagine that any vaccine could continue to cause new issues/symptoms so long after injection. I can see initial symptoms taking longer to resolve, like the many neuropathy stories I’ve read about.
I do think trying to stop “doom scrolling” and researching every symptom and disease would help with the anxiety. For me I do have a couple of things that I still need to have investigated / tested, but I’m trying to stay calm about it and not to attribute it to the vaccine. I also, and in hind sight stupidly, decided to stop taking my SSRI in the middle of all this. That certainly didn’t help my anxiety levels. So I need to deal with that this year. Hoping to be able to get back on track this year and start to feel like my old self again. Keep me posted on your situation.
(SHORT VERSION - VESTIBULAR MIGRAINE AFTER PFIZER BOOSTER?)
Hello all... I'm new here, forgive me for posting something that has probably been discussed ad nauseum. But as there are over 1,100 pages here, reading them all has become a bit much for me, so I would appreciate any input on my situation:
Received Pfizer Booster shot (plus Flu vaccine) on December 2nd. On December 6th, I suffered a vertigo attack. Unlike previous vertigo attacks, I did not get progressively better. In fact, after about a month, I began to get worsening/new symptoms:
Poor vision, specifically with an inability to change focus from distance to near vision
Mild-to-moderate ear pain/pressure, with hearing issues like vague, passing earache, and occasional full stuffy feeling in the ear to the point that I could not hear out of it (both ears)
Significant worsening of pre-existing tinnitus
Occasional, quick-passing feelings of spasm in my face (or at least, it felt like my face was ABOUT to break into spasm)
Weird feeling in forehead (felt like a vague numbness, though I could still move my forehead, and feel touch to the area), neck pain, which spread to become jaw tightness (thankfully, this only lasted about a week and is mostly gone).
The general weird, post-vertigo head sensations are still there as well, but I expect this (maybe for not this long) and am least concerned about this.
I've had vertigo in the past, as well as a history of migraines. After my previous serious bout of vertigo in 2018, test results indicated possible CNS lesion, but Brain MRI was fine, and it was chalked up to "possible oculomotor deficiencies", and I was advised to do vision/eye exercises.
This time around, a neuroopthalmologist has diagnosed this as vestibular migraine. ENT has not made a diagnosis yet pending a new Brain MRI coming up this week, but her testing also indicated CNS lesion.
Has anyone else had vestibular migraines after a recent COVID vaccine, and how are you doing? Did it pass, or is this going to be something chronic that I'll have to deal with?
thanks. That may make sense as I had a rocking/boat-like feeling for a couple of days in summer and have had no other balance problems until now. Perhaps it’s just flared up again? Been 3/4 days now, hope it goes away soon.
@jamesb28 yes I have had them since the beginning 2021. More frequent in the beginning now they are less common. But I just got Covid recently and it brought them back.
Has anyone here cured/resolved your tinnitus, if not fully at least partially? If yes, what helped you with that? Mine spiked a year ago 6 weeks after my Moderna booster (which I should have never got, as the added protection over just having the first 2 doses wasn't worth it). Mine is a high-pitched ring/hiss that I notice all the time. If I am busy I can ignore it for a while. But if I stop or am in just a normal setting (at home with the TV on), I'll notice it immediately. Before this I had a very, very low level tinnitus that was more of a lower "whhrr" sound. This is definitely different and worse. I am getting to the point where I believe this is going to be permanent and impact the rest of my life. Anything and everything I even think about doing I have to think "will it affect my tinnitus?". I know there is a school of thought that stress/anxiety can cause or exacerbate tinnitus, and this last year I have been a ball of heightened stress. But I don't put a lot of weight on that theory. I seemed to have some level of resolving a couple of times over this past year, but it keeps coming back. I this was inflammatory in nature, i would expect that it would have resolved by now. I did have an ENT visit a while back and my hearing was perfect, so I would think that points to the vaccine or our immune response actually damaging our audio-vestibular system somehow. And there's no way to make anyone accountable for all of the horrid adverse sie effects that so many of us are experiencing, many much worse than me. If you ave had any luck with this, or have heard of other people's success, please respond. Thanks and take care.
(SHORT VERSION - VESTIBULAR MIGRAINE AFTER PFIZER BOOSTER?)
Hello all... I'm new here, forgive me for posting something that has probably been discussed ad nauseum. But as there are over 1,100 pages here, reading them all has become a bit much for me, so I would appreciate any input on my situation:
Received Pfizer Booster shot (plus Flu vaccine) on December 2nd. On December 6th, I suffered a vertigo attack. Unlike previous vertigo attacks, I did not get progressively better. In fact, after about a month, I began to get worsening/new symptoms:
Poor vision, specifically with an inability to change focus from distance to near vision
Mild-to-moderate ear pain/pressure, with hearing issues like vague, passing earache, and occasional full stuffy feeling in the ear to the point that I could not hear out of it (both ears)
Significant worsening of pre-existing tinnitus
Occasional, quick-passing feelings of spasm in my face (or at least, it felt like my face was ABOUT to break into spasm)
Weird feeling in forehead (felt like a vague numbness, though I could still move my forehead, and feel touch to the area), neck pain, which spread to become jaw tightness (thankfully, this only lasted about a week and is mostly gone).
The general weird, post-vertigo head sensations are still there as well, but I expect this (maybe for not this long) and am least concerned about this.
I've had vertigo in the past, as well as a history of migraines. After my previous serious bout of vertigo in 2018, test results indicated possible CNS lesion, but Brain MRI was fine, and it was chalked up to "possible oculomotor deficiencies", and I was advised to do vision/eye exercises.
This time around, a neuroopthalmologist has diagnosed this as vestibular migraine. ENT has not made a diagnosis yet pending a new Brain MRI coming up this week, but her testing also indicated CNS lesion.
Has anyone else had vestibular migraines after a recent COVID vaccine, and how are you doing? Did it pass, or is this going to be something chronic that I'll have to deal with?
Hello,
Am trying to help someone who had vertigo and neck pain after the Moderna 3rd dose. The neck pain went away within a week (after taking a course of prednisone) and the vertigo has improved but short spells are sometimes brought on by lying on back, rolling over during sleep, or looking upward. One small study below suggests that "Post-vaccination vertigo/dizziness can manifest as exacerbation of previous neurotological disorder. The median time to the onset of vertigo/dizziness following COVID-19 vaccination is 10 days." Hope your symptoms continue to improve.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9721153/
If you have a chance, you (or your doctor, or a family member or friend) might consider reporting your symptoms to VAERS and/or signing up for the Yale Listen Study.
One thing that may help some people with post-vaccine inner ear symptoms: trying to lower inflammation and increase circulation/blood flow (to the head, for example), in part through an anti-inflammatory diet (lower amounts of foods or ingredients that may constrict blood vessels/raise cortisol levels such as salt and caffeine; higher amounts of anti-inflammatory foods such as salmon, green vegetables...).