thanks for the response. My son just spent a week in the hospital. Nicklaus children’s hospital of Miami. They are well known for their great neurology practices. They did an mri of inner ear which was good and displayed his eyes by optometrist to see if optical nerves were inflamed which they weren’t. They did another brain mri which was good and also a spine mri along with a lumber puncture (spinal tap) which also came back good. Very good doctors that gave him the $1,000,000 work up and still couldn’t give us any answers. All the neurologist said that it is not vaccine related because symptoms didn’t start in the first week. They ended up diagnosing him with conversion disorder.
yes, exactly what you mentioned. I have my MRI in the beginning of Jan, and while I am happy I will get examined, probably the results coming back will be clean (at least I really hope they do). Thanks for posting and mentioning the fact that it can actually take 8 months or even more for some to recover. Im 4 and a half months in, relapsing like never seen before. But I guess thats just how it is now, unfortunately, the new normal for some of us..
@medee yes! All my symptoms did eventually go away somewhere between the 5-6.5 month mark
What were yr symptoms that eventually went away?
@jaydev55 Hi, thanks for asking about my progress. Unlike some others on this forum, my symptoms have only been inner ear-related with tinnitus in the left ear and disequilibrium and a swaying sensation when walking. Things have gradually improved over time and by keeping active, but the problem is not gone. The ENT specialist I've seen a couple times thinks it is vestibular neuritis resulting from an inflammatory effect on the body after my first vaccine. Both he and the vestibular physiotherapists I've talked to all say that post-viral or post-inflammation inner ear dysfunction are more or less always there, but the symptoms diminish and go away as your body compensates over time.
They have all said that vestibular retraining or rehabilitation is based on trying to speed up the process and drugs delay recovery by masking symptoms. I was definitely helped by doing a few months of vestibular exercises, but I only talked to the physio by phone and email and now I've actually seen someone who did a full assessment and concluded that I have partly compensated and that my balance function is slowly adapting to the "strange signals" coming from the left inner ear/vestibular nerve. I previously concentrated on walking and gaze stability exercises, which helped, but the physio has now suggested I work on some of the standing exercises using a wobble cushion to improve proprioception. Some of these exercises involve watching optokinetic videos online and I've just started doing some of these. I suspect this will help over time and I'll report back.
I initially tried Betahistine, a histamine analogue used to treat symptoms of Ménière's syndrome, but that didn't help and only made me drowsy. I also tried travel sickness pills since I was queasy for the first few months, but those only made me feel sleepy and the nausea gradually went away. I tried fluticasone propionate nasal spray and that also did nothing. The ENT specialist said most drugs are "nasty" with side effects and he only recommended them, along with steroids, for severe cases. I concluded that the "natural healing" approach made more sense for me. Incidentally, I went to an osteopath for neck stiffness and tension and that helped with relaxation, but not with dizziness. However, I had some partial success with acupuncture and usually felt less dizzy for a few days after. The ENT specialist confirmed that there is scientific evidence that acupuncture can help in some cases, but the mechanism by which it helps is not fully understood medically.
Incidentally, I delayed getting my second shot after my reaction to the first one, but eventually got it and also a booster. My logic, which some may not share, is that the damage is already done and I'm not "fully protected" so I've gone through months of dizziness but without getting the full benefit. I had no reaction to the 2nd and 3rd shots. I can report that here in Britain, at least, none of these vaccines are going to stop you catching the coronavirus, although they may help in reducing the severity of illness. Almost everybody we know with young or college age kids is "double jabbed", but most of them have gone on to catch Covid!
I am having some luck with nerve issues across my stomach and on my side by taking a probiotic and also glucosamine chondroitin with MSM.
@sahmed Hang in there! I know it sucks because I've been through the same thing. It will get better and eventually you'll be back to yourself. It took me 8 months. I will say that while I know you're ecstatic to see a neurologist, they probably won't find much. I've had an MRI, CT Scan, visited the ENT and neurologist, and nobody seems to find anything (which is frustrating good news). So, keep your head up and if doctor's tell you everything looks fine, be thankful for that and know that time seems to be the one thing that heals!
Why do you think you got better? What did you take?
@jacquelynsauriol I’m all for having open discussions, but I personally am getting a bit weary of all the linking to non reputable sources on this site (and even the occasional affiliate link - like really, we are trying to make money off each other here now?).
Joe Rogan is an ex mma fighter who was advocating ivermectin at one point (which has little to no evidence that it does anything, and has also resulted in about 100 overdose deaths). I want answers too, but I think we need science based solutions and not random doctors, media personalities, and naturopaths giving random advice.
the science based solution for COVID was the vaccine. science based solutions for everything aren’t always the best idea. the fact that naturopaths are helping people beyond what they medications are doing for people is actually a wonderful thing.
if our symptoms and issues could possibly be cured by natural medications that would indicate that it’s not as bad as we think it is.
You also make a solid point that science got us into this mess. It is hard in these times to know what advice to follow. I should’ve followed my gut instinct and not been brainwashed into the shot. It may have helped lots of people but for some reason in my heart I knew it would cause trouble for me. I cancelled my appointment several times before actually taking it.
I'm the same way. When drawing straws, I always get the short one. We know ourselves better than anyone else and if you know you've got a pattern of being an outlier, then yes, you tend to be an outlier in all things.
Fasciculations are those bubbly/flickering sensation (like popcorn pop up) under the skin right?
I used to have those post a walk. Once I sit down after a walk, this happens for 15-20 mins or so.
However, today I have it even when I am not walking. I just have it in random places in my legs.
Has someone got it and what have y'all done to fell better? Anything that can help?
I don't know why I'm having new symptoms every now and then!🥺😭
@jacquelynsauriol I’m all for having open discussions, but I personally am getting a bit weary of all the linking to non reputable sources on this site (and even the occasional affiliate link - like really, we are trying to make money off each other here now?).
Joe Rogan is an ex mma fighter who was advocating ivermectin at one point (which has little to no evidence that it does anything, and has also resulted in about 100 overdose deaths). I want answers too, but I think we need science based solutions and not random doctors, media personalities, and naturopaths giving random advice.
the science based solution for COVID was the vaccine. science based solutions for everything aren’t always the best idea. the fact that naturopaths are helping people beyond what they medications are doing for people is actually a wonderful thing.
if our symptoms and issues could possibly be cured by natural medications that would indicate that it’s not as bad as we think it is.
You also make a solid point that science got us into this mess. It is hard in these times to know what advice to follow. I should’ve followed my gut instinct and not been brainwashed into the shot. It may have helped lots of people but for some reason in my heart I knew it would cause trouble for me. I cancelled my appointment several times before actually taking it.
I'm the same way. When drawing straws, I always get the short one. We know ourselves better than anyone else and if you know you've got a pattern of being an outlier, then yes, you tend to be an outlier in all things.
Oh yes, I have always been the outlier. Not sure why but I’m a magnet for you know what the saying is…..so I should’ve known
thanks for the response. My son just spent a week in the hospital. Nicklaus children’s hospital of Miami. They are well known for their great neurology practices. They did an mri of inner ear which was good and displayed his eyes by optometrist to see if optical nerves were inflamed which they weren’t. They did another brain mri which was good and also a spine mri along with a lumber puncture (spinal tap) which also came back good. Very good doctors that gave him the $1,000,000 work up and still couldn’t give us any answers. All the neurologist said that it is not vaccine related because symptoms didn’t start in the first week. They ended up diagnosing him with conversion disorder.
I’m no doctor but I don’t believe that diagnosis for one second. I was told functional neurological disorder too which is the same thing. Nope nope and nope. I think what is going on is they just don’t have a way to quantify what is wrong with us. I truly feel for your son and your family. I have a 15 year old as well. I hope he makes a speedy recovery.
Anybody in the New Jersey area who knows a neurologist who understands and acknowledges and is able to help our case?
I got an appt with one but it’s in January... I’m so desperate to get better but the wait times are so long. I’m 12 weeks post Moderna, 29 yo female and my life’s become a wreck. Everyday feels like survival. Sometimes I am so scared that it’s not the vaccine and something seriously neurological is wrong with me.. but then I didn’t have these problems befor the vaccine? The only thing I’ve dealt with before is anxiety. I can’t stop thinking about my health as new symptoms show up every few weeks and it has sort of paused my life - I’m so depressed. I can’t live the rest of my life like this. I try to be positive and hopeful but end up crying most the time. 🙁
I know exactly how you feel 🥺 I took my first Moderna shot in late July and that’s when all my symptoms started (ear ringing, head pressure, dizziness, fatigue, nausea, neck stiffness, to name a few) It has been a long road new symptoms all the time. Going to vestibular physical therapy and it has helped a little but I keep having relapses. Hope you feel better. Hang in there 💕💕💕 Maybe time is the only thing that will help.
@heybro Why do I think I got better? Because I don’t have many symptoms anymore. That’s not to say I won’t have another flare up, but I feel 95% better than I did before. As I mentioned, it’s been 8 months since my first shot. I don’t believe these symptoms will last forever. Your body needs time to rid itself of whatever caused these issues in the first place. Take care.
