Greetings,
If you read my original post, you'll see that I had my first Moderna vaccine on April 13th. On April 24th, I went headlong into severe vertigo, nausea, severe tinnitus, etc. It wouldn't stop. A few days before that, I had the "rash" on my toes, armpits, and waistline. Itchy and bumpy.
Now, on May 8, almost one month after that jab, I am 95% recovered. Still a bit dizzy at times, nothing like before. Nausea is finally gone and no more neck/headaches. I'm feeling so much better mentally too. The last week or 10 days has been a living hell.
I saw my PCP yesterday. She told me to wait. Not to do the second shot. I agreed. I have 80% coverage now - the additional 10% - 14% isn't worth it as long I can keep my antibodies going.
I might look at a booster when they address people like us and assure us we will not ruin our lives by getting it. The only question now is: How long am I covered? Right now, it appears to be good for at least 90 days - I'm hoping longer. I'll get checked in July for antibodies.
@hippo33 don't think this is your post, but when you said you had days of terrible dizziness, was it spinning or feeling off balance? Curious. I have had both, right now it is episodes of feeling off balance, like I will topple over. Thanks!
Have you tried physical therapy or home therapy maneuvers? Epley or other maneuvers?
Hi Trinity, Yes, I have. The first time I experienced vertigo with nystagmus and trying to do the Epley after only reading the instructions on the internet resulted in a dash to the bathroom where I threw up until I couldn't anymore, then crept to bed for the night, still with severe symptoms. But, it may have helped, because the next day I had no further issues until after my Moderna, 6+ months later.
Two days post-Moderna vaccine, same symptoms. Watched an online Epley video, decided I needed to allow a little time before moving to doing it on the second side. Again it didn't seem to abate my symptoms initially and I still had them the next days, although at 9 weeks along they're now at a 2/10 after 10/10. When I went for a vestibular rehab therapy eval at 7 weeks post-vaccine my PT did maneuvers, watching my eyes for nystagmus and said that my first episode was likely due to BPPV, but it didn't appear that was the case now - so he didn't do the crystal relocating maneuvers, giving me home eye exercises and future therapy appointments to progress to more exercises over time. Said it was likely my vestibular nerve was affected, possibly vestibular neuritis now and encouraged me to see an ENT to see if steroids might be prescribed. I don't think I would have challenged myself appropriately with maneuvers or exercises by just reading about them, so I really appreciate the input I'm getting from a PT specializing in vestibular therapy.
@thenystagmus Sorry, Sassafras, if my post came across as a bit brutal ☹️. Not my intention.
I think that the whole medical establishment worldwide found themselves between a rock and a hard place. Faced with this massive worldwide pandemic and the millions of deaths and counting, they felt they had no other option than to seek emergency authorisation for the vaccines. Those vaccines are proving massively successful, and providing vaccine hesitancy can be minimised they could effectively at best almost wipe out this virus and at worst make it far less deadly.
Reading some posts here, it would appear that for (hopefully) tiny cohorts of people, they are having undesired consequences — as for example with you and others on this forum. It was of course impossible to foresee every undesired effect. To have publicly speculated on all the possible and hypothetical side-effects would have very, very probably resulted in massively higher vaccine hesitancy and therefore the world not conquering this virus. They therefore, it would seem, chose to concentrate on the potentially life-threatening side-effects. I hope and would like to believe that the side-effects such as the one being reported on this forum will, as the medical world is claiming, prove to be temporary.
That being said, I understand completely where you're coming from, and that that bigger picture does not exactly help your individual situation.
Thanks, Keith - I didn't think your post brutal. And I understand the desperately quick rollout of the vaccines, although if the information I've read about the lack of the usual studies on animals prior to humans is true, it's pretty amazing they skipped that. So, I also agree that the focus on what's happened since the vaccines started coinciding with multiple reports of less common possible side effects is now our main personal concern. And, thankfully some of our medical communities are becoming aware through communication among themselves concerning their patients' post-vaccine concerns and referencing the VAERS reports. That is serving to help my individual situation. I live in a medium size city and the caregivers I've resourced have been quick to share that they've heard that there are many less common side effects occuring, like ours and other kinds also, regardless of whether or not they're being acknowledged by the CDC or publicized in mainstream media. And I am thankful that I'm being offered diagnostics and therapeutics that I hope will help in my recovery.
@teresawarren40 The doctor with anecdotal evidence in British Columbia had 3 out of 900 with dizziness issues. That would be 1/300. Don't know how many patients the average general practitioner sees but they would have to see a lot before they noticed a pattern. I'm sure if only one patient came in with this they are not going to jump to conclusions. But ENTs may be seeing a lot more? If there is some other virus causing this that just happens to be going around during the time when people are getting vaccines we should see it in unvaccinated people too? But what bothers me is the immediate dismissal of all symptoms by the health industry that aren't immediate post injection reactions as "unrelated" when it is known that vaccine side effects are often long term and occur later like the blood clot issue that was already noted. If there is an issue they should be looking for a common variable with who experiences it and is there a treatment that should be given immediately when it manifests. This is bad medicine to completely deny it, and the censorship of vaccine side effect complaints by big tech and the medical industry? How is this any different to the way China stifled that doctor in Wuhan who first alerted his colleagues to the coronavirus disease? This is an exotic bat virus, it's not surprising that exposure to it's antigens in vaccines, or the disease itself, produces an intense immune response. These Covid vaccines will probably turn out to be as potent as the Anthrax vaccine that triggered a lot of auto immune responses in the military.
I think the CDC and other like agencies world-wide feel they can't afford to trigger any more vaccine hesitancy than already exists. In my opinion not correlating the delayed reactions to vaccination being reported (and deaths, also) doesn't seem really honest or helpful to those of us suffering them. I'm more hopeful that as evidence mounts, the rubber-meets-the-road practitioners we see will be more likely to admit connections. And I know from medical articles begining to be published that case reports are starting to be noted. I also believe researchers will eventually find interest and financial support needed to begin to develop helpful responses for those of us affected. And maybe vaccines and treatment modalities will be modified to cause less side effects and direction be developed to treat them quickly and more effectively when they rear their disablings in our lives! Yes, too little, too late ...but I hope for more. Better later than never, y'know...
Hi @savoyil! Thank you for the response! My PCP did acknowledge he has seen several people with dizziness and vertigo after the vaccine and all that he was aware of resolved within 3 weeks. My PCP is usually very careful about his comments. My otologist prescribed me a steroid taper over the phone when I reported vertigo and dizziness after the vaccine, which is highly unusual for her. When I acquired tinnitus after an acoustic trauma 7 months ago she would not prescribe steroids for me because of the side effects. So that tells me she is aware of a response after the vaccine.
Teresa, Thanks for keeping us updated on your tally of our progress. It's good to hear your PCP and otologist seem to be aware of post-vaccine vestibular issues! My ENT wanted to get ENG results before moving forward, but then his office staff called to say that couldn't be scheduled for over a month. (Makes me wonder if this test is in high demand these days?!) In the meantime I've changed insurance and moved from my APRN at my low cost clinic to my new PCP yesterday and she offered me a steroid taper while I wait for the ENG. I have to wait till new week to get it because my new insurance is snarled and is telling the pharmacy I don't have coverage with them, but I need to do fasting blood tests next week first to look for possible autoimmune indicators anyway. So, one day at a time...
@teresawarren40 What is the recovery timeline? I'd be very interested in participating and following that information!
@suemarie-2 Yes I did for about a week. That is the main reason my Dr. recommended I not get the 2nd dose.
Wow! I am stunned to read these hundreds of stories that are similar to mine. I've had bouts of mild dizziness with change of seasons in the past but all resolved with some antihistamine. However, within a few days after my first Pfizer covid vaccine I got some persistant and annoying dizziness that did not respond to Flonase and antihistamines. Then 3 weeks later I got the second dose of the vaccine and Yikes-- the dizziness went to new levels. My ears feel full and there is a lot of pressure thru the middle of my head, ringing. I cannot close my eyes or lie down some nights which kept me awake for days a a time. I got a bit of relief from lorazapam last night and was finally able to sleep some. I'm going to try the Antivert today to see if that helps. I had an eval for BPPV but it wasn't a real clear cut case and the maneuvers were not super effective. I'll go back to PT to see if that helps.
Thank you all for your input on what has helped you!
Will you get the second dose if you haven't got it already?
And yeah I am curious that any of you that didn't use meds for the symptoms, have got better with time?
Because I have fear that using a lot of meds for the symptoms that are not known where they actually came from is kind an another big shot for the immune system.
I can't really decide to get the second one or not. Some doctors said sure get the other dose, and some said wait until symptoms gone. And what if the symptoms last 2 months?
Hi - I've decided not to get anymore Covid vaccines. So far I've only taken prescription Vitamin D (mine tested very low), Vit C 500 twice daily with food and 400 Ibuprofen twice daily with food. That's all the Ibuprofen I feel I can tolerate, but I can't say I'm convinced any of that has helped. I have improved over these 9 weeks since my Moderna vaccine, but since I still have bothersome symptoms I'm planning to try a 6-day Medrol taper next week. I know it should decrease my immune system activity, but my new PCP is wondering if I have autoimmune issues. If so, for that reason (and for reduction of possible vestibular inflammation) decreasing my immune activity may prove helpful. I have additional longer-term reasons to lean into this suspicion if autoimmune issues, including possibly having Covid a year ago and having mild sore throat and swollen sore lymph nodes in my neck for several days about every 2 months since then. And a long-ago borderline elevated ANA titer that resolved.
I've read that some are beginning to say Covid itself might be considered an autoimmune disease. And I think many more are acknowledging that it can trigger autoimmune responses and diseases. I don't know if we know yet if the vaccines can also. I don't understand a lot of this well, but I think I might be about to get more of an education about it. Thanks, I appreciate you raising interesting questions! And be assured you're not alone in trying to navigate this confusing maze. Best wishes and 🙏
@smileyoer Regarding the possibility of delaying the second jab for more than 2 months due to your side effects. This article may interest you: https://www.medicalnewstoday.com/articles/study-considers-benefits-of-delaying-second-dose-of-covid-19-vaccines
@allisonk I was curious to know how you are doing now? I am experiencing the exact same tingling sensations and while my other major symptoms have dissipated (heart palpitations, vertigo), this one continues to make me quite nervous. I hope you are doing better and have found some relief.