Hello everyone,
I'm new here. I've had tinnitus since February of 2021, apparently triggered by a dose of antibiotics for an ear infection, followed by vertigo and a diagnosis of BPPV. I've had many vestibular physical therapy sessions (11 so far, I think) trying to get my symptoms in check. It's like playing whack-a-mole and between that and the tinnitus it has been very difficult. Still feel "off" more often than not.
I have been delaying getting the Covid vaccine because I did not want to pile up side effects on top of the malaise I already feel. However, with the presence of the new Delta variant here in NYC I was planning to schedule my appointment for the Pfizer vaccine for next week until I saw these posts. I was familiar with the website (recommended by my PT), but I had not read the forums.
I did not read all entries, but it seems most people got these side effects from the Pfizer and Moderna vaccines. Does the Johnson and Johnson vaccine also has the same side effects?
I'm very scared to get the vaccine and increase my symptoms, I truly don't know if I could deal with this getting worse. But I'm also scared not to take the vaccine. Any feedback is much appreciated.
Some here have reported similar side effects from the J & J vaccine as well as Pfizer and Moderna. I have Meniere's Disease and was concerned that getting the vaccine would make my existing symptoms worse. So rather than blindly getting the vaccine and finding out too late, I started researching, which led me to this forum. Reading here convinced me that getting the vaccine is not in my best interest. I also talked to my ENT who told me that if I got the vaccine, it was likely that I would experience the vestibular side effects--that either getting or not getting the vaccine would be a risk and that I needed to decided which risk was more acceptable to me. I did not, and will not get the vaccine.
My suggestion to you is to do more reading and research and talk to your doctor before you decide either way.
@lpycb42 I still can’t sleep on a side because when I wake up (after 1or2 hours) my face and ear are red and very hot, I thought that I was crazy and overstating so didn’t tell to anyone.. But I’m not the only one? So maybe it’s really something weird that is linked to all that awful situation
Just took my 4th dose of ivermectin.
There is a notable improvement today. Not out of the woods yet but things are more tolerable today. If I was better than this tomorrow, I'd call it a significant improvement.
Just a note I've noticed advil helps alot with this annoying little headache that keeps popping up, and pepcid does seem to help as well. Not really sure how but I think maybe because I keep laying down, I get heartburn? Either way, it's not hurting
Also, I had trouble eating because food would make me worse but I made a spicy chili with ground turkey and hot Italian sausage and it's not only good, but it doesn't leave me feeling worse. I think spicy foods and tomatoes are anti inflammatory so yeah.
I've stood on the supplements too but I want to up some of them because some are reccomended for twice a day.
I'll post another update later! Feel better everyone!
@thenystagmus Thank you. I took a PCR test around the time I was ill and it was negative. Unless I had Covid and had no symptoms at all, but neither my husband nor my son became ill during the pandemic, so I would think it is unlikely I had Covid. We were ultra-careful starting with the first signs that the pandemic had reached NYC. But maybe I'll ask my doctor anyway. Although I think antibodies confer immunity only for a few months, and I really don't want to get Covid. I feel I'm between a rock and a hard place.
I've just had the opportunity to start doing home vestibular therapy exercises again this week. With my new vestibular PT I did additional testing for integration of all my balance abilities. When the walls and floor of the testing apparatus were moved, especially when I was told to close my eyes, I was glad I was in a harness, for it caught me over and over as I totally failed 4 out of the 6 parts of the testing. This, along with my VNG and rotary chair testing gave my PT very precise home exercises to prescribe for me. They provoke my symptoms, as they should, but I'm instructed to diminish their intensity if they rachet them up more than 2 levels from my baseline on a scale of 1 to 10.
I can already sense that they're helping me to adjust to where I'm at with my presently diminished abilities at 4 months out from my vestibular injury. And I'm finding that I'm more adventurous about head, body and eyes movement as I'm seeking to once again increase my activity level.
Now if I could also get back to sounder and longer sleep I think I'd be doing pretty good. I'm trying not to ramp up too fast, in case the theory about exercise induced relapsing would prove to be a trigger for me. Since I last relapsed on 6/13 and followed that with a second tapered Medrol pak, I'm glad I've mostly been back into a recovery mode.
@ladyd Yes! I was about 85% better after week 5 and 90% better after week 6. I didn’t start feeling fully normal until the end of May/beginning of June (and my first shot was on April 15th). All in all, while I had a month of not having fun, it wasn’t as bad as what other people had. Most symptoms were manageable and after week 2 I was comfortable enough to go to work and drive and what not, even if I felt a bit off on and off during the day. My symptoms were very on and off. I’d have off nights and days and then better and then off and then better for about 3-4 weeks and then consistently better after week 4.
So glad I found this forum! My experience: Moderna 1st shot only had a sore arm. 30 minutes after 2nd shot I had a terrible dizzy spell. 3 weeks to the day after second shot, I had a dizzy spell again. Since then I have lighted-headedness 24 hours a day and waves of dizziness that happen every few minutes. I have constant pressure in my right ear, pressure behind my eyes that intesifies with the waves, brain fog and developed tinnitus last week. I have not had any nausea or pain. I have seen my NP, an ER doctor and an ENT specialist. All agree I do not have vertigo or any other inner ear problem. I have had a CT scan, an MRI and full blood work-ups twice. Everything is normal. I have taken otc drugs, a 5 day step-down of Prednisone (steroid) and meclizine with absolutely no change. I am scheduled for a balance test in 3 weeks but feel like it is a waste of time and money. I struggle at work and don't feel well enough to drive. I'm hoping this goes away with time or the doctors find a treatment that works.
It will get better...It is just going to take some time...If you scroll backwards on this site you can see folks have had issues for months!...but the good news is there are some giving updates on how their symptoms are subsiding and going away...it is just going to take time...
Information in the below links for Ivermectin
https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/ - Ivermectin
https://www.exstnc.com/ - doctors prescribing ivermectin
A lot of folks on this forum have had a lot of success with the following supplements
Liposomal Glutathione (liquid) 1500mg - some folks took just the 1500mg 1x daily - others took it up to 3x daily until the dizzy-ness subsided
Liposomal Vitamin C - 2000mg
Quercetin - 500 to 2000mg daily
Zinc - 20 to 30mg daily
I have a follow-up on 7/9. If my symptoms are still persisting we will go with the ivermectin treatment
@thenystagmus Thank you. I took a PCR test around the time I was ill and it was negative. Unless I had Covid and had no symptoms at all, but neither my husband nor my son became ill during the pandemic, so I would think it is unlikely I had Covid. We were ultra-careful starting with the first signs that the pandemic had reached NYC. But maybe I'll ask my doctor anyway. Although I think antibodies confer immunity only for a few months, and I really don't want to get Covid. I feel I'm between a rock and a hard place.
Smart cookie, you are! I wish I'd had a PCR in March 2020, but they weren't offering them then for my symptom set. When I recently did the Covid-19 IgG, it had probably been way too long to show positive (came back negative) and if I'd had Covid, my defenses had retreated into bone marrow, or wherever those backup systems lay in wait.
In my daughter's family, her husband and son had Covid, she and their daughter didn't show any signs of it. She is O-negative blood type and some studies show those with her type to be more resistant to Covid.
I understand you not wanting to slam into anything. With hindsight I'm suspecting I probably got slammed with Covid 1.5 years ago, then 6 months after that for unknown reason(s) was slammed again by an overnight bout of apparent BPPV (relieved by Epley), then 6 months later I rammed into getting the Moderna vaccine.
Yeah, dizzy max and now trying to sort it all out. My experience is that the vaccine gave me my most impactful and lasting symptoms that I'm still contending with ...so, for me, I'm not even going to test my vaccine-induced antibody level - I'm just done with that, regardless.
Best wishes for you in sorting through your options. May you have Wisdom for that! 😏🙏
PS I hail from the Midwest US, but back in the 70s I lived in Buffalo for a stint and worked at the Greyhound-Continental bus station there, where inhabitants of the Big City would come through. I learned there that "cough-ee, reagala" wasn't black coffee - Nah, it wuz with "ca-reem& shuga"! 😂