@fatheroftime How are you doing? My symptoms are gradually getting better....wishing you the best. Your experience sounds very much like mine.
@gab234 Thankyou. You were right nothing showed up on my ana bloods etc. So shows no significant signs of an autoimmune disease. I guess our bodies have to find a way to deal with the massive over reaction. I had a better week last week but have had a flare up last 2 days but still some good signs. Hope your feeling better
@judes did your menieres just go? Like out of the blue. It feels like whatever the vaccine has caused in the bodies just seems to flare up and come and go in severity.
@chelsun Thankyou for the reply I’ve been going through kind of same symptoms. They think pots like symptoms. Just trying to get back on track. I’m 5 months in and just trying my best just seems like a have massive flare ups which knock me back abit. Hope you are feeling better now 😊
@nath7 Hey! It's not completely gone BUT it has improved. I find any exertion, or exposure to lights (especially the kind in stores, fluorescent?), or movement (like TV) triggers my symptoms, especially the headaches. I've been trying to "habituate" by going into a store wearing my dark sunglasses and a hat with a brim and trying to stay one more minute than last time without triggering symptoms....I also make sure I only watch TV for short periods, or I close my eyes and listen.
This is very similar to Meniere's except this has been pretty constant whereas Meniere's tends to come in waves, or episodes. I haven't had any real breaks as yet but I remain optimistic.
My eye/vision problems have mostly resolved which is a HUGE relief. 🙂 I'm better overall but still very susceptible and seem to "fold" pretty quickly! This is the first day since Oct 7 where I feel like I could try to work...?
How are you doing? Hope all is getting better for you...
Judes
@nath7 And I swear I have POTS...again! I had this with Meniere's twenty years ago and none since but I can feel it, that lightheaded feeling when I stand, or try to crouch. I haven't even mentioned this to my doctor because I feel like I can handle it (been here before) and am careful standing and moving around.
How is your POTS?
If you scan my old posts, you can see my progression. But basically.
1) July 22, had second dose of Moderna
2) One week later ended up extremely dizzy and basically falling down
3) Happened again a few days later, but with chest pain.. Went to emergency room.
4) Had a halter monitor for ongoing chest pain and dizzyness.. Halter monitor came back "abnormal ST-T waves. Should see a cardiologist rather urgently"
5) Saw the cardiologist and they monitored me for six weeks. Eventually was given a clean bill of heart health, and chest pains slowly subsided over the month
6) August/September - still have bad morning headaches, balance issues (hard to walk, especially after a few drinks), dizzyness. Visiting an ENT. They sent me for tests.
7) Tests came back showing Spontaneous Nystagmus and 25% degraded right vestibular function
8) I was started on 9 days of high dose steriods.. I felt a lot better, although my vision went a bit blurry from the steroids themselves. After steroids were done though, symptoms slowly returned, but not as bad
9) ENT says only think left to do is vestibular rehabiliation, which I may try. But I still have weird headaches, and now ear pain as well.
So I'm going for a second opinion soon, as this is going on four months now.
@judes that’s great news hopefully you start to gradually keep improve. Been a tough battle for months but I like your optimistic look on it!
@judes oh you have had pots symptoms before? How did you mainly deal with it? And did you manage to mostly get rid of them? Yeah I’m dealing with pots symptoms and they seem to flare up in severity. Last week I had a good week where I didn’t have hardly any dizziness. But last 2 days it’s flared up again. Tried beta blockers and they did help but caused me insane dizziness so stopped them. I seem to react to every medicine put in my body! I’m just trying to keep a positive mind to it now. And know that I will have good days again when this flare up stops.
@judes I’m doing much much better. Most days 100%, sometimes I regress to around 95%. But I also just had our first child so no sleep doesn’t help me stay 100% lol.
It took 6 months to get to this point. And I’m still hesitant to do cardio/workout. I’m still taking propranolol and clonazepam to help with the vestibular migraine, which my ENT believes will take a few more months before I can ween off. I honestly think a few more months and life will be back to normal.
Once I’m fully certain that I’m better with no relapses, I do plan on posting an extensive write up detailing my story and what I did to heal myself.
I have been feeling the exact same as you! My vision has been kind of blurry the past 3 months, where it is difficult to focus on things. It is like the sharpness of my vision is not there anymore, and it is definitely worse when I step out of the house. It feels like I am not present at all and that I am tipsy or something. It also seems to be worse when I am on the time of the month.
I am planning to book a VEPs test to check the nerves behind the eyes, has anyone else tried that?
Same situation here. Eyes giving me so much grief right now. Initially started having problems around four weeks after my first Pfizer vaccine. Issues included some mild pins and needles feeling around eyes. Occasional sharp stabbing pain in back of eyes. Occasional flashes of light in my vision field. Floaters I have had for years suddenly very prominent in my vision.
After a few weeks these symptoms settled down for about 3 weeks before flaring up again really badly. Along with the previous symptoms I am now having blurry patches in my vision (not floaters) and bouts of vision wobbling as if what I'm looking at is slightly vibrating or pulsing.
My eyes are also feeling so achy like they are straining. I noticed when using a flannel to wash my face that my eyes feel tender when I press them gently. Never had these issues prior to the vaccine.
I've been to an optician twice now and had two OCT scans. Both times nothing could be found and eyes are in good health apparently. I'm now waiting to see a neurologist. Doctor said some symptoms sound like occular migraine but I don't fit all the symptoms. I have a pretty much constant low grade headache in my right temple since vision problems started up again.
With both episodes of vision problems I have had a head cold and was wondering if somehow this is causing extra inflammation in my head? Also this second episode Im going through started just before that time of the month. Could it be hormone related? 🤔
I am interested to hear from anyone who has had these or similar stuff and been given a satisfactory explanation for what is going on. 🙏
My symptoms were really bad when I had an awful cold as well. I think that might be because the nerve and immune systems are very connected. It is quite strange about the time of the month, I've had it twice now where the blurry vision/tipsy feeling has got worse during that week. I also have loads more eye floaters than I used to, which are difficult to not notice when I am looking at white walls etc.
I've also seen an optometrist and went to the Eye Casualty dep. of my local hospital and my eyes are apparently healthy and my vision is 20-20 (I have had the eye drops that dilute the eyes in order to scan the back of them and I was fine afterwards for the people who are worried about doing this!).
I have just seen a neurologist who wants me to do a MRI scan to check the brain, and see another opthalmologist to confirm that the eyes themselves are healthy. He has also requested me to do a Visual Evoked Potentials test to check that the information from my eyes to my brain travels in the correct duration - apparently that might show whether the optic nerve (behind the eyes) has been inflamed or damaged. I am hoping that this might give me some answers!
Thanks for sharing your experience. I will definitely speak to my neurologist when I finally see them about VEP testing. It's a small comfort to know I'm not alone in this and that I'm not imagining that it gets worse when I'm sick or run down. My OCT scan showed my optic nerve was fine with no inflammation, I feel it's more my brain is not getting the signal from my eyes quickly enough which is why I'm seeing wobbly images. Like there is a second delay or something. It's hard to describe. I will update about any news I have when I finally get seen by a professional which given current waiting times looks like it could be next year some time.
Hey guys, I’m sorry you have both been going through this. I get how you’re saying it’s hard to focus on things, things aren’t as sharp and that typsy sort of feeling. I somehow feel like my vision is misaligned as I’ve still got 20/20 vision with my visual acuity with my glasses on still. But my vision feels off and very out of whack, almost like it’s not aligning properly to make a clear image. Did either of you have vision issues before this? I have moderate-severe myopia but obviously it’s corrected with glasses/contacts - nothing like this before though.
I’ve had the VEP tests already and everything came back normal. I would advise you having that though just to rule everything out. I’ve seen 3 ophthalmologists now and a neurologist and everything came back normal. One of the neuro-ophthalmologist said I have mild convergence insufficiency but it’s much more than that as my problems are near, far and always constant. So now I’ve decided to see a behavioural optometrist - someone who is a bit more alternative but does way more testing and looks at everything holistically. I really advise you both to potentially see somebody like that. This guy had done more testing than anyone else and has picked up that my vertical and horizontal alignment is off - which means my visual system is out of whack at the moment. I’m seeing him again next week and might be staring some kind of vision therapy. I’ll let you know how it goes, hang in there!
Thanks @jess7 for your useful information. I will definitely look into your suggestions. The vertical and horizontal alignment is interesting and it sounds like it could be something that I am experiencing given that I feel like at times stuff that I'm looking at feels like I'm looking at a magic eye picture. I have to really concentrate to focus and get my eyes to be still so I can see clearly. Apart from needing glasses for mild astigmatism in right eye I have never had any other eye problems ever. All this arose after my first Pfizer.
@yoki thanks for providing another update. I have an appointment with an immunologist this Thursday to discuss the effects of the vaccine on me. I also plan on sharing your story to get his feedback on if he thinks that regimen medicine would help me if I need to get a booster.
I hope your appointment goes well. I'm really curious to hear what he has to say if you don't mind sharing.