To all those people who have been dealing long term for 8-10 months please give us some good news that the symptoms do gradually seem to calm down! I’m 5 months in and I’m just really really hoping for some good news right about now
@mina thanks for sharing! Did you do the MRI tests with neurologist?
Yes, i did the MRI test a few days ago but i don't have the results yet. I have muscle twitching on my left side and twitching all over my body at night when i try to fall asleep.
I just dont get how we blood test all normal but at the same time we feel extremely off with sooo many symptoms. Where is the disconnect? What is the medicine missing here? I am feeling very down with relapces and almost losing faith in my body. May God heal us all.
@medee Hi Dee,
Any incidence of chest and nerves pain? Or a weird feeling in the head?- Thankfully no, I didn't have any of this and I am so sorry that you are going through all this. I hope that this is all short-lived for you. I am almost 8 months out since one and only M shot on March 19th. Anxiety, panic is gone, a little bit of dizziness I had is gone, insomnia has slowly gotten better though still not fully recovered, I am hopeful though. Hyperacusis was very severe for over 6 months, but almost gone. I still have tinnitus and it is most annoying in the mornings. Still battling the floater issue all day long. Night vision improved, but still see halos, starbursts at night.
@ldcorum Please do get the floaters checked out since you had a sudden onset of them. You want to make sure that the retina is intact etc. If that checks out well, it may be really hard for you to find any answer as to what they are and will they go away, etc. I have seen one optometrist, 2 ophthalmologists, 1 retina specialist, 1 neurologist just for the floaters in the last 5 months, and no one has any freaking idea about if/why/how the vaccine would have caused it and have no remedies to offer other than get used to it or risky surgery. Unfortunately yet thankfully there are several others that have reported these after the vax, so we are not alone and I have seen a couple of reports of them fading somewhat after months, so there is hope.
@nicp605 Sorry to hear you’re still in the struggle. I feel GREAT after my two week course of Fluvoxamine. I noticed a big difference in the neurological symptoms on day 2/3 of my 2 week course. The dizziness also improved, but it wasn’t this huge noticeable shift. I did start to see improvement on the dizziness front though and it got better and better. I was so afraid that going off of the medication would cause a relapse. I did notice a bit more dizziness and vibration/muscle twitching a day or two after my last dose, but then from there, it has been just steady improvement. I’ve been discharged from vestibular rehab as I now haven’t had any major dizziness in weeks. Neurological symptoms are 99% gone — I just get some random muscle twitches still under my eye and in my right hand. So my doctor and I don’t *know* with any scientific certainty if it was the Fluvoxamine that helped or if it was just time, but personally, the difference I noticed was significant and really started me on this upswing. I’ve been virtually symptom-free since I finished my course. It’s only been a few weeks, so who knows if I’ll have a relapse, but I’m at least optimistic that even if there is a relapse, I know I can get better. I hope this helps. I encourage you to seek a second opinion if your doc won’t give you this SSRI, which is fairly innocuous for 2 weeks anyway. I had no noticeable side effects. The only thing you have to be careful of is caffeine. I was fine with the trace amounts in decaf coffee but one day, I decided to drink a soda and I couldn’t sleep at all that night. It prolongs the half-life of caffeine and amplifies it. But otherwise, no side effects. I was so glad my doc doesn’t need 20 double-blind studies to try something. For me, it was a huge turning point in my recovery for whatever reason.
I tried fluvoxamine and stopped after two days of only 6.5mg...couldn't sleep
@lmkk I do believe that most of us have probably experienced a sort of Gillian barre syndrome seeming like a lot of reports are confirming this from vaccines. Had you doctor recommended anything about Gillian barre syndrome and how to help? I presume that I’m experiencing so sort of thing like that I’ve just paid for ana blood test so might show something up. Hope your feeling a little better 🙏
@medee I'm feeling much better! My symptoms were mainly debilitating head pressure, brain fog, difficulty forming sentences, short term memory loss and to top it off dizziness/vertigo. All of my symptoms were concentrated in my head- no uncomfortable feelings elsewhere. I did have brain zaps occasionally for a few days but that went away quickly. Symptoms faded over four months and today I feel nearly the same as before. My neurologist referred to my experience as CNS demyelination which can sometimes be a side effect of vaccines. Again, happy to report that I'm nearly 100%! Occasionally, I can be forgetful and get headaches which at this point could be normal - it's getting difficult to say anymore.
@pfizervictim Hi there. Have you tried eating fresh pineapple and having turmeric daily? I find that it does help knock the edge off my symptoms which is better than nothing I suppose. If you haven't already give them a try as they are probably the strongest natural anti inflammatory foods you can get. I'm also stuffing my face with baby sweetcorn as they are supposed to be good for the eyes. My eye pain has mostly gone now I'm nearly ten weeks out from my first jab although I do still get random eye "wobbling" at times.
How are you feeling these days? I see the turmeric has helped you cure. How do we go about it? Drink water mixed with turmeric or something else?
Have you been completely recovered from the side effects? What were your symptoms...
Will wait for your response.
Do use the Quote option while replying. It helps in knowing which comment is being replied to.
Take care!
Hi there.
My symptoms were mainly strong pins and needles, weakness and numbness in feet, hands and face. Along with dizziness and joint pain and mild gastrointestinal disorders.
On a good day I feel about 75% better which I never thought I would be saying.
I take turmeric capsules daily from Holland and Barrett and I make myself a cup of turmeric tea before bed which I make using turmeric powder from my spice rack with hot water, honey and ginger.
Hope this helps.
I just wanted to post an update. I am 5 months out from getting vaccinated. My symptoms were slowly improving with time. Untill I got Covid. I am now in full relapse but hopeful that with more time my body will heal. My primary doctor as well as my neurologist believe this is vaccine related. So having that support has been nice. Even if we haven't found what helps. That's not how my experience was with doctors in the beginning. I am back to dizzy vibrations in my head and throughout my body everyday, neck pain and extreme fatigue. Before the vaccine I had never gotten Covid. So I knew what I was experiencing was vaccine related. Now it's harder to tell if this is a relapse from the vaccine or from the Covid itself. I am thankful for this forum and hope we all get to comeback and comment on full recovery soon.
@nicp605 This is almost exactly what I was dealing with except for my profound hearing loss in one of my ears. I’m also 35 yo without any prior medical issues. I just went to my specialist (Ear Nose and Throat) doctor after my Primary Care Physician said she won’t prescribe Fluvoxamine because there’s no studies showing it’d help with a vaccine reaction (versus studies showing it DOES help with both COVID and long-COVID).
Some doctors need proof that something is going to work before they’ll prescribe it. Thankfully, my ENT said its more of a cost-benefit analysis. Since Fluvoxamine is usually well-tolerated and the duration is so short, the risk is incredibly low, so he said, why not give it a try if it could possibly help?
Given Fluvoxamine is very well understood and already prescribed for other things, the worst that could happen is it just doesn’t work and you’re in the same position you are now. Doctors like your doctor and my PCP are basically saying, sorry, there’s nothing we can do for you, instead of trying to find solutions. When the cost and risk to try something like an SSRI (which loads of people are on anyway), why not give it a go?
My experience was a bit more forceful. The first occurrence happened about 2 months after receiving the booster shot when while walking across my Livingroom floor, it felt like an Icepick hit me on the right side of the back of my head about two inches from my ear, it was so forceful that it knocked me to my knees. My first thought was that someone had stabbed me, the second was that a stray bullet must have come through the wall. I put my hand on my head to feel for blood, there wasn't any. After experiencing such horrific pain it scary that it came and then was gone with no aftershock. I ignored it thinking it must be old age...then about 3 weeks later I was awakened at 3:15 in the morning, I laid there wondering what woke me up? I turned my head, wrong thing to do, when not one but two stabs hit me almost in the same place as the first. When I tried to get out of my bed I hit the floor like a rock. I have never in my life experienced the strength of this dizziness, I was dx with Vertigo 36 yrs ago, this WAS NOT VERTIGO! I could not get up, I had to crawl to the bathroom and pull myself up trying to stand up. The nausea and vomiting that occurred was like nothing I had ever experienced before. I called a neighbor, got to the hospital ER where they ran every test imaginable: Pet Scan, MRI and CAT scan thinking I may have had a stroke or even a heart attack, kept me two days just to find NOTHING! absolutely nothing showed up what-so-ever. The specialists finally said that I probably had a "cluster headache"...go figure.
@lmkk I do believe that most of us have probably experienced a sort of Gillian barre syndrome seeming like a lot of reports are confirming this from vaccines. Had you doctor recommended anything about Gillian barre syndrome and how to help? I presume that I’m experiencing so sort of thing like that I’ve just paid for ana blood test so might show something up. Hope your feeling a little better 🙏
I'm feeling much better these days I'm around 75% better which I'm so pleased about.
Doctors told me not much can be done to treat GBS it was a case of waiting it out but to take daily ibuprofen to help with inflammation.
Apparently the timeline for recovery on the GBS site I have been reading states 6-12 months.
I have read so many posts here where people are more that likely suffering with mild GBS given their symptoms described. It amazes me their doctors haven't diagnosed it.
Sounds like many medical professionals aren't aware of it, there isn't much about it on the internet either including the NHS website which is very vague but I have found an excellent UK GBS charity which has the most in-depth research and information available online which I think many users here can benefit from reading.
Many will recognise their symptoms in the GBS variants on the site.
I've seen a couple of people posting on here about difficulty swallowing... apparently that's a form of GBS too!
I recommend people to have a good look at the site it's really helpful:
https://gaincharity.org.uk/faq/gbs-and-acute-associated-inflammatory-neuropathies/