The exception is a few not so good days that seem to be directly related to weather changes happening (maybe barometric pressure fluctuations?) when my area hovers on the edge of a weather system for an extended period. This sometimes causes my facial paresthesia to reoccur a little, or my ears pop a few times, sometimes mild vestibular symptoms and a bit of tinnitus, but they resolve as storminess or fair weather finally occur. Having one of those funky days today. 😔 But I'm thankful that l can identify my trigger and have expectation of speedy resolution. 👍🙏
I think a couple of 6-day low dose tapers of steroids (Medrol pak) spaced a month apart was helpful for me earlier on. I had definite improvement while taking them, with some rebound afterwards, but overall I suspect they contributed to my longer term recovery.
More recently I've been relying on the steadily increasing compensation I've been gaining over the last 2 months of twice daily home vestibular rehabilitation therapy exercises. My PT has been upping my challenge level weekly, with just having graduated me to every 2 weeks. It's been a lifesaver for me!
Other than that I've only started taking (and continue to take) 2000 IU Vitamin D & 500 mg Vitamin C & 400 mg Ibuprofen each morning.
I've never gotten a diagnosis beyond VOR (vestibular-occular reflex) Dysfunction, which is really just a description of a result from my vestibular testing, so I'm picking up my ENT records tomorrow to try to find out what diagnosis they've been using to bill my insurance company.
I've been really dissatisfied with the (lack of) care I've gotten from this doctor, so I'm thinking of changing my insurance next year from an HMO to a PPO, to where I can instead see the neurotologist in my city (that my current insurance denied a request to go to out of their network) for continuing care. Even if I never have a relapse again, I have some residual hearing loss in my right ear that may need to eventually be addressed.
OH! And I'm DEFINITELY stopping at getting the one Moderna vaccine I got in early March! I've had MORE than enough of this type of adventure to last me the entire rest of my life!! 😅🙏
Hi Sassafras, it's good to hear you are well on your way to recovery after such a bumpy road getting this far. I too visit rarely these days but not because I have recovered unfortunately. I seem to have taken a wrong turn. I spoke with two doctors recently about my symptons, headaches, dizziness, fatigue etc etc,Ā the first one advised ibuprofen and vitamins. I should have known better because I remember from before I couldn't take Ibruprofen. I took 200 mg and that set me off on a 24 hour dizzy journey from hell. I spoke to another doctor and she advised I take anadin, what a waste of time. I still feel out of sorts but it has knocked my confidence and made me feel so low in mood. So I seem to be back to square one, great!
Hope you continue to make good progress as it's gives hope to us all.. Best wishes.😊🙏
Hi Tabby,Ā Golly, we've both been doing this for quite a time now, haven't we! After reading your post this morning, I was remembering reading here a while back that someone else in the UK was working their way through the system there to try to become included in Covid long haulers treatment and encouraging someone else to do so also. Did you read those posts? I wonder if we could find the posts and check in with that person if they would have info that might prove helpful to you? It seems these longer term vaccine reactions go far beyond the expertise of our regular medical providers' experience.
I also have a history of unwanted side effects to a number of medications, and sometimes have to take a really low dose of others to avoid sedation, so I guess it's not surprising that the Covid vaccine and I haven't had a good time of it.
You may feel back to square one at this time ...I'm sure you remember that I also went there majorly about 4 different times, but I believe your body is still working to adjust to the insults of your vaccines and wants to bring you back on top of it all!
Keep your chin up and try not to drag your knuckles on the carpet! Good to be in touch with you again, matey! 👍😉🙏
The exception is a few not so good days that seem to be directly related to weather changes happening (maybe barometric pressure fluctuations?) when my area hovers on the edge of a weather system for an extended period. This sometimes causes my facial paresthesia to reoccur a little, or my ears pop a few times, sometimes mild vestibular symptoms and a bit of tinnitus, but they resolve as storminess or fair weather finally occur. Having one of those funky days today. 😔 But I'm thankful that l can identify my trigger and have expectation of speedy resolution. 👍🙏
I think a couple of 6-day low dose tapers of steroids (Medrol pak) spaced a month apart was helpful for me earlier on. I had definite improvement while taking them, with some rebound afterwards, but overall I suspect they contributed to my longer term recovery.
More recently I've been relying on the steadily increasing compensation I've been gaining over the last 2 months of twice daily home vestibular rehabilitation therapy exercises. My PT has been upping my challenge level weekly, with just having graduated me to every 2 weeks. It's been a lifesaver for me!
Other than that I've only started taking (and continue to take) 2000 IU Vitamin D & 500 mg Vitamin C & 400 mg Ibuprofen each morning.
I've never gotten a diagnosis beyond VOR (vestibular-occular reflex) Dysfunction, which is really just a description of a result from my vestibular testing, so I'm picking up my ENT records tomorrow to try to find out what diagnosis they've been using to bill my insurance company.
I've been really dissatisfied with the (lack of) care I've gotten from this doctor, so I'm thinking of changing my insurance next year from an HMO to a PPO, to where I can instead see the neurotologist in my city (that my current insurance denied a request to go to out of their network) for continuing care. Even if I never have a relapse again, I have some residual hearing loss in my right ear that may need to eventually be addressed.
OH! And I'm DEFINITELY stopping at getting the one Moderna vaccine I got in early March! I've had MORE than enough of this type of adventure to last me the entire rest of my life!! 😅🙏
Hi Sassafras, it's good to hear you are well on your way to recovery after such a bumpy road getting this far. I too visit rarely these days but not because I have recovered unfortunately. I seem to have taken a wrong turn. I spoke with two doctors recently about my symptons, headaches, dizziness, fatigue etc etc,Ā the first one advised ibuprofen and vitamins. I should have known better because I remember from before I couldn't take Ibruprofen. I took 200 mg and that set me off on a 24 hour dizzy journey from hell. I spoke to another doctor and she advised I take anadin, what a waste of time. I still feel out of sorts but it has knocked my confidence and made me feel so low in mood. So I seem to be back to square one, great!
Hope you continue to make good progress as it's gives hope to us all.. Best wishes.😊🙏
Hi Tabby,Ā Golly, we've both been doing this for quite a time now, haven't we! After reading your post this morning, I was remembering reading here a while back that someone else in the UK was working their way through the system there to try to become included in Covid long haulers treatment and encouraging someone else to do so also. Did you read those posts? I wonder if we could find the posts and check in with that person if they would have info that might prove helpful to you? It seems these longer term vaccine reactions go far beyond the expertise of our regular medical providers' experience.
I also have a history of unwanted side effects to a number of medications, and sometimes have to take a really low dose of others to avoid sedation, so I guess it's not surprising that the Covid vaccine and I haven't had a good time of it.
You may feel back to square one at this time ...I'm sure you remember that I also went there majorly about 4 different times, but I believe your body is still working to adjust to the insults of your vaccines and wants to bring you back on top of it all!
Keep your chin up and try not to drag your knuckles on the carpet! Good to be in touch with you again, matey! 👍😉🙏
Hi, really good to hear from you, like old times eh? I can't remember reading the posts you are referring to, there are many I haven't read unfortunately, so many new people here too. So sad.
I think the ibuprofen set off this latest reaction, weird dreams with it too (no bovine beasts) just my neighbour skiing on his rooftop and me climbing a mountain of houses all piled on top of one another, like I said, really weird, goodness knows what it all means. I'm hoping for that white cow to appear than I'll know I'm on my way to recovery. My cns must be so sensitive right now, and like you say, we've been doing this for some time and it's all taken its toll on me for sure. I have tearful moments out of frustration and anger, not to mention the stress and worry all this has caused.
Yes I do remember your relapses and the horrible experience you had when your neighbour had to drive you to your hospital appointment when you were extremely dizzy. You've been through a lot and I know you've had moments of despair too, that's why it gives us all hope to hear that you are making very good progress in your recovery.
Doctors are not acknowledging any connection with the vaccine and my symptons, but they don't seem to suggest any alternative cause either. The whole subject is taboo still. I know my crazy symptoms all started since the jabs and I have to remind myself of that and not let me mind wander into Google land. I had a text to make an appointment for my flu jab, not a chance. No more flu jabs or boosters for me. I'll take all the necessary precautions and I'll carry on doing a lateral flow test now and again, although that's not always 100% accurate so I'm told.Ā
So good to hear from you and looking forward to your post reporting 100% recovery. Best wishes.😊🙏
Hi, really good to hear from you, like old times eh? I can't remember reading the posts you are referring to, there are many I haven't read unfortunately, so many new people here too. So sad.
I think the ibuprofen set off this latest reaction, weird dreams with it too (no bovine beasts) just my neighbour skiing on his rooftop and me climbing a mountain of houses all piled on top of one another, like I said, really weird, goodness knows what it all means. I'm hoping for that white cow to appear than I'll know I'm on my way to recovery. My cns must be so sensitive right now, and like you say, we've been doing this for some time and it's all taken its toll on me for sure. I have tearful moments out of frustration and anger, not to mention the stress and worry all this has caused.
Yes I do remember your relapses and the horrible experience you had when your neighbour had to drive you to your hospital appointment when you were extremely dizzy. You've been through a lot and I know you've had moments of despair too, that's why it gives us all hope to hear that you are making very good progress in your recovery.
Doctors are not acknowledging any connection with the vaccine and my symptons, but they don't seem to suggest any alternative cause either. The whole subject is taboo still. I know my crazy symptoms all started since the jabs and I have to remind myself of that and not let me mind wander into Google land. I had a text to make an appointment for my flu jab, not a chance. No more flu jabs or boosters for me. I'll take all the necessary precautions and I'll carry on doing a lateral flow test now and again, although that's not always 100% accurate so I'm told.Ā
So good to hear from you and looking forward to your post reporting 100% recovery. Best wishes.😊🙏
Yeah, we've had some good times supporting one another through these Mad Hatter-esque adventures! 😅
When I get a chance, I'll look for those posts I'm talking about.
Your dream sounds related to you trying to scale your difficulties to get on top, while viewing your neighbor enjoying skiing the downsloping incline. I do wish there weren't those of us having these unwelcome reactions to these vaccines that the majority of people seem to be doing ok with. I really wonder what will happen for those that keep getting Covid boosters, maybe several times a year. I've never been interested in flu shots and Shingles vaccinations sound like they have admitted terrible reactions for some.
I've hoped for complete recovery, but don't hold your breath to hear I've gotten there. I'm trying to ride this beastie, getting adept at steering out of the mucks of discouragement when I dip into symptoms from time to time.
Even if no medical professionals will sign on with me, I am convinced that this business is due to adverse reaction to Covid vaccine. The best I'm hoping for is finding some of them to come alongside me in dealing with the sequelae to my otherwise unexplained journey! 👍😅🙏
I've had a similar sensation 2-3 weeks after the first pfizer shot. I first had uncontrollable shaking for about an hour the second night after vaccine then migraines and random periods of diziness where I would have to lay down but whenever I tried to get sleep I would get this feeling of danger or shock or spidey sense sort of feeling and it would force me to stay awake. So for the most part I was resting on my butt or with the upper body elevated but it resolved after a few weeks. I Also had severe congestion and dehydration and a few nights of heart palpitations. 2.5 months later I'm still having slight congestion, random pain moving around my lungs and stomach which I have no clue what it means other than blood clots poossibly. And for 3 days now I'm having a mf rash on my neck that looks a lot like a covid rash where you get red bumps looking like cigarette burns and a lot of redness and itchiness. For a year after the infection I was fine, as soon as I had my vaccine I'm having this clusterfuck of aggressive inflamation immune responses and they still have the nerve to tell me to have my second dose. As expected my gp told me these are unlikely to be vaccine side effects which is ridiculous. Do they get some sort of incentive from successfully getting ppl to get both jabs or sth against all evidence of debilitating side effects? I don't understand.Ā
@yoki I'm happy to hear your symptoms improved.Ā Ā Six months is a long time, but it's a relief to know they didn't go on forever.Ā May I ask if they gradually resolved or disappeared all at once?Ā And if it was gradual, about what month did you start feeling improvement?Ā Thanks again!Ā Hope everything resolves soon.
The symptoms gradually improved. There were good days and bad. Eventually, more good days than bad.Ā
@yoki I know of one person who got vertigo an unknown amount of time after the J&J Covid shot, which her doctors say is unrelated.
She was recovering and then had another bout of vertigo, not sure whether she received a booster or not.Ā
I asked my physician for a course of prednisone in case I started up with the side effects again after the J and J shot. Hopefully I won't need it.
@holt Let us know if they do diagnose you with it, it could help a lot of people out here on the site.
This isn't a reply to any one particular post but I wanted to share my experience as it might help others. Just finding this forum has helped me. I know these days one can find almost anything online, but almost 500 pages of posts with similar stories has made me think there might be something to this. I had my second Astra Zeneca jab on July 16 and on Aug 11 in the wee hours of the morning I woke about 4am for my usual trek to the bathroom, but ... I could barely walk and became violently dizzy, plus stomach spasms with vomiting and diarrhoea. Repeatedly. I couldn't get to the toilet in time but managed to clean myself up in case I had to call an ambulance - it was that bad. Because it came on so suddenly I tried to convince myself it was probably food poisoning though I hadn't had anything dodgy but I had had a bit of chicken. (Stories about food poisoning often involve chicken. Or fish.) So I took my phone back to bed and told myself if it was food poisoning it'll be intense but short lived, though I've never had it before that I know of. I called a friend and asked them to call me back and if I didn't answer to please call me an ambulance. I was really scared and every time I moved the dizziness started. By 10am I was a lot better but still too scared to walk outdoors or risk taking a shower or eating hardly anything. The next day (Friday) I was feeling much better and did everything almost as normal including a bit of a gym workout. All was fine until I lay on the floor on the mat and the room started spinning again. The next morning I phoned to get a doctor's appt and they managed to fit me in on Monday when I explained my symptoms. I'm 66 and healthy and have had all sorts of vaccinations with no trouble at all. And will continue to do so. Anyhoo, the doctor seemed to think it was norovirus (gastro) and gave me a Rx for pills (ProCalm) to help the nausea and dizziness, which I don't think really do much. I think it was highly unlikely I caught any virus with all the hand sanitising, mask wearing, physical distancing we're all doing. I live alone. It has been over two weeks since the doctor visit and I still don't feel confident it has gone as I still get a bit dizzy in bed, if I look up, getting up and down off the floor. Oh - and to top it all off - on my way to the doctor's office two weeks ago, I fell and fractured a bone in my left hand! I had flat shoes on with good tread and there was no obvious tripping hazard so it may have been due to balance or just a coincidence; not sure. But that has added to my current debilitating issues. I hope this passes soon as it was scary to think this could be a permanent condition. I'm still pro vaccines but I think people should be warned that this sometimes happens and what to do about it and that it is only temporary. And to be extra careful so you don't break anything, including your own bones!
Ā
Hi everyone,
It's been so great to find this forum, I'm not on social media and finding people with similar symptoms has been a huge relief. I live in Canada and got my first shot of Pfizer on May 28th. I had absolutely no reaction to it in the days that followed, just a sore arm. In just under two weeks though, I started to have episodes of imbalance and disequilibrium, coming out of absolutely nowhere. These started to get longer and a week later I was having the symptoms all day everyday. Of course, I immediately went to the ER where, like others, I was diagnosed with BPPV, given the Epley maneuver and sent home. This didn't help, and neither did the betahistine (Serc) I was prescribed. While the symptoms were their absolute worst for the first few weeks (I couldn't focus on my laptop or phone for more than a few minutes or I'd feel extremely dizzy), they stuck around well into June and July. I was shaky all day every day, unable to walk or move without feeling like I was rocking back and forth, ear fullness, and brain fog making it totally impossible to do my work as usual. The best way to describe the symptoms are floating, feeling like I'm on a boat 24/7, rocking, swaying etc., but thankfully not the classic vertigo spinning of the room. Either way though, extremely debilitating and frightening- my anxiety was so bad at first I could barely sleep through the night (I am usually an extremely deep sleeper). I'm a student in university so I had to definitely take a leave of absence since I could barely put two coherent thoughts together during the day. After many many weeks of waiting, I finally visited an ENT, who said that he could find nothing wrong with my hearing, and since I didn't have classic vertigo. He suggested I get an MRI to rule out anything brain related, which of course, is a terrifying thing to hear. Since everything medical takes SO SO long in Canada, I decided to go back home (I live in India) to get some tests done and see some specialists.
During all of this, my symptoms- which had really begun to subside- flared up exactly a week after my second shot at the end of July. At first, I hadn't made the connection to the vaccine, and was completely shocked at the intensity with which my dizziness had returned. Once I returned to India, I visited my family physician, an ENT and got an MRI (which thankfully came back normal), in a week's time. I have been taking allergy pills on the regular since they showed up extremely high on my blood-work. After many many days of extreme worry and depression (I've been feeling like my life is totally over), the symptoms are very very slowly abating. I've been praying that things go back to normal soon. This whole experience has been really scary, and the lack of knowledge about vaccine side effects among all the doctors I've seen has only added to my worries. It's a lonely experience, and reading all of your posts here has really helped ease my mind.
Ā
Did corticosteroids help anyone else with their symptoms? I've seen a number of people mention it on this forum- does it work if you have mal de debarquement-esque symptoms rather than full on classic vertigo? Has anyone else's symptoms lasted for almost 3 months?
Ā
@kdoyle84 How strong CBD oil do you use?
I started also these adrenalin surges while trying to sleep. And I haven't slept for almost 3 days now.Ā
Just planned to order CBD but there are so many different intensity, that I don't know what to order? 5%, 10%, 15%, 20%, 25%, 30%?
Ā
Anybody help, please?
Ā
@romaina I also had a completely normal inflammation report in my bloodwork (C-Reactive Protein test). What I did have was extremely high allergy levels (IgE antibodies). That might be worth testing for!
@lukenick have you heard of pine needle tea? iām having the exact same symptoms and this has been recommended to meĀ
