ANA Discussion Forum
General Category => AN Issues => Topic started by: mwatto on October 30, 2021, 02:53:00 am
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I have had increased tinnitus and very bad nerve pain after my first Pfizer jab as well as other unpleasant side effects after two weeks. It has settled down mostly 5 months later apart from ear pain which persists and disrupts sleep ongoing. I worry re the second as the trigeminal flare was significant and scary. I was wondering if an AN might cause issues after vaccination even if transient? For example could it cause neuro inflammation that makes the AN swell or worse grow- inflammation is a known factor for growth. I belong to two forums one being dedicated to tinnitus and hearing loss and quite a few with newly discovered AN after MRIs. If you are sceptical of my post google: Tinnitus and hearing loss after Pfizer or neuro side effects/ trigeminal flares or demylination. Some of us are struggling- easy to say get a second. Hard to find empathy when pain is so subjective.
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Not sure but I'm not taking any chances. I've been living with constant, roaring tinntus since my surgery 16 years ago.
I've read of other people (without AN problems) complain of tinnitus after being vaccinated.
In fact, my latest MRI (last Saturday) has shown I'm having regrowth. 3mm so far. I've noticed a bit more lightheadedness and double vision than usual.
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So I joined a forum post VX and 4k of us with issues re tinnitus, hearing loss, pins and needles, joint pain and vertigo...the good news is it seems most symptoms will resolve over months (I am good again now after two months except for bad earache I still get but a disprin plus a panadol sorts this out). The tinnitus is ongoing for many months though on my forum and people seeing ENTs etc etc...some with hearing loss on prednisone and some suggestion there to take straight after second one which I will do. Could be the VX or the injection technique- all I know is I had a rough time and my doctor said wait a few months now for immune system to settle - review next year. I live in Perth Australia we havent had Covid here much - no masks even.
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Hi Michele,
What a rough time for your immune and nervous systems. So glad you're feeling better !!!
At the end of the day the VX is being administered as part of a global trial, under emergency use authorization. All the potential side effects are yet to be identified. Subsequently, hard to predict effects, in those with specific conditions, like an AN, already affecting the nervous and immune systems.
take good care,
Stella
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Hey Stella I joined a very good forum a few thousand of us having issues. Am at two months - things are better but not keen on second as its affected my nervous system. Still am luckier than many who have been severely affected. I guess I was curious if an AN made a difference and scared it maybe made mine swell as I had a number of symptoms from severe ear ache, new onset dizziness, tinnitus, hearing loss, pins and needles, stiff neck, nerve pain in ear and behind eyes, and I read that inflammation can make it grow. I will be having MRI soon but cannot see any specialist until next year end Jan. Of course doctors here just say unlikely vx related - but then there are thousands on my forum who have had issues - many of which are similar and worse to me. Its so political that even getting help is hard.
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Hope your next MRI goes well Michele! Too many factors that can affect even an irradiated AN.
Keep on the healing path,
Stella
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I have had no side effects with the vaccine. Had 2 doses and the booster of Moderna. Get your vac.
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This is the first I’ve heard of tinnitus being associated with the vaccines. Anecdotally, I’ve had two Pfizer shots and a Moderna booster and didn’t have any increase in AN symptoms after any of them.
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I posted this in another topic but this one seems to be more appropriate for vaccine related. Apologize for posted twice…
I’ve developed some issues, not sure if this is related to vaccine (Pfizer), but let me tell you what I have. AN left side, removal of the inner ear so no hearing on that ear (Not sure if this is call trans-lab or something else…, i lost track of all the terminologies after 15 years), and yes, the surgery was done 15 years ago. After 6 months, I had CFS leak into my inner ear. My ENT said that she can see the fluid behind the ear-drum. Took me about 2 years to get used to the imbalances and started to live normally again w/o hearing and some loss of balance. Took me at least 5 years to be able to sleep on that side, so just wait a bit longer if you still have issue sleeping on that side.
Recently, about 3 months ago, I started to have the itch inside the AN ear…really itchy and I had to press hard a the bottom of the earlobe to relieve some itch. Sometimes I have to use the cotton swab to scratch the inner ear canal too (But NOT recommended by my ENT). Then about a month or so ago, I started to have twitches inside the AN ear. Then just last week, the itchness mostly gone (only sometimes now), but the twitches seem to happen more frequently and so is the tinnitus. Tinnitus is very loud now and seems to amplified with noise/sound from the good ear…(i closed off the good ear and the AN side does not amplify the tinnitus so I assume that is caused by sound from the good ear). I have some mild headache on top of my eyebrows (both sides). Also experiencing some facial tenseness in the AN side. I’ve been very worried that the tumor has come back. I’ve always had tinnitus since the start of AN and before and after the surgery but not this loud and it sounds like find bubbling sound instead of the normal high/medium pitch sound. All the symptoms I’m having now seems to either indicate that the tumor has return on the facial nerve or something (like vaccine) has disturbed the area.
However, when I told my brother, he called me and said that his wife (She has no AN issue)…also got the second Pfizer booster shot 2 weeks ago (mine was 3 weeks ago), and she also is experiencing itches on one year but both of her ears are having issue with tinnitus and muffled. Her friend also has same issue. My older brother also has same issue with his ear after getting the Pfizer vaccine (his is the first). I’m starting to think that my itchy issue starting from getting the first booster and now with the second booster shot, it is getting worse??? All I am saying is this might be the pattern (I hope, since I don’t want to get the tumor again!). My older brother’s issue seems to subside after few weeks. My sister in law issue seems to get better as well after 3-4 weeks, but she only back to 60% normalcy in terms of hearing.
Did you also see the news about some Vaccine researcher also experiencing the same issue? He is paid to do research for one of these vaccine companies and he is having this issue too and he is asking the govement to look into this unreported issue.
At any rate, I’m trying to see if i can make appointment to see doctor Slattery or Dr. Lokovic…I know they probably work together on the AN surgery and one is a Otolaryngology and dr. Lokovic is a neurologist. Which doctor does one need to see first or does not matter?
Thanks and hope my information i have hear could help someone.
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I hope you are feeling much better very soon. A good idea to see a neurologist...
these medical injections can have an effect on the nervous system, I guess it depends to what degree for each person.
Neurological side effects of SARS‐CoV‐2 vaccinations
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8653194/
Acta Neurol Scand. 2022 Jan; 145(1): 5–9.
"safety concerns against SARS‐CoV‐2 vaccines are backed by an increasing number of studies reporting neurological side effects. The most frequent of them are headache, GBS, VST, and transverse myelitis. Healthcare professionals, particularly neurologists involved in the management of patients having undergone SARS‐CoV‐2 vaccinations, should be aware of these side effects and should stay vigilant to recognize them early and treat them adequately."
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Thanks for the link.
Interesting, it does mention facial nerve palsy..
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Thanks SP. I belong to the Neuro Covid Long Haulers and plenty there of neuro issues after VX. Am six months out after just one Pfizer and some symptoms improved but stabbing ear pain still at times, pins and needles, joint pain. Neuro Inflammation - so I am taking a few things now.
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Hi Michele,
It sounds like you are all over it in terms of treatments that may assist you, may things ease for you very soon.
my best
Stella
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Thanks SP. I belong to the Neuro Covid Long Haulers and plenty there of neuro issues after VX. Am six months out after just one Pfizer and some symptoms improved but stabbing ear pain still at times, pins and needles, joint pain. Neuro Inflammation - so I am taking a few things now.
Michele,
Wow, my symptoms are almost the same! Ear pain, pins and needles, joint pains (this one I did not even think about it and have had it for few months now and now it makes sense!, and my AN ear feels like inflamattion…some facial stiffness and tongue numbness on that side too…
-Binh
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Hope your next MRI goes well Michele! Too many factors that can affect even an irradiated AN.
Keep on the healing path,
Stella
I’m having very similar issues right now after second booster although the itchy inside the AN ear has started a few months back, and in past 3 weeks, it is getting worse with same issues that you described: needles, some pain (not frequently), headache daily, weakness on that side of the face, neck ache, shoulder ache, tinnitus, eyes seems to be sensitive to looking at computer and watching TV….I’m thinking that I’m getting the tumor growing again on that side since symptoms as I remember are very similar to what I had 15 years ago before I had the surgery to remove it. Will get MRI next week and hopefully not another tumor but just vaccine issues and eventually would go away.
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Not sure but I'm not taking any chances. I've been living with constant, roaring tinntus since my surgery 16 years ago.
I've read of other people (without AN problems) complain of tinnitus after being vaccinated.
In fact, my latest MRI (last Saturday) has shown I'm having regrowth. 3mm so far. I've noticed a bit more lightheadedness and double vision than usual.
What are the symptoms before the MRI? Are they similar to the first AN you had? I’m having similar symptoms now and my surgery was 15 years ago on same side, basically headache on the eyebrows both sides although more on the AN side…neck ache, shoulder ache, weak face (just a bit to be noticeable), loud tinnitus than usual in the past 15 years, pressure in the back of the head….all seems to point to AN regrowth but I will get MRI next week to confirm it.
Thanks.
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Hi BP I have learnt so much from my vax injured forum Covid Neuro Long Haulers- so since I have been using suggestions such as antihistamine, low dose aspirin etc etc (maybe joing our forum) I am recovred - but I still stay on because I learn a lot. I never had Covid but our symptoms are very similar fro that vaccine.
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Hi BP I have learnt so much from my vax injured forum Covid Neuro Long Haulers- so since I have been using suggestions such as antihistamine, low dose aspirin etc etc (maybe joing our forum) I am recovred - but I still stay on because I learn a lot. I never had Covid but our symptoms are very similar fro that vaccine.
Thanks. I have been using Benadryl to help sleep and calm my nerve as well.
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I hope its nothing! My MRI revealed nothing had changed even though I had intense new nerve pain stabbing in ear and eye. I am now on ldn low 0.25 and CBD though it has improved over time anyway. I tried a few things as had a wide range of unpleasant symptoms over 8 months. Thank God for my forum as no one lese would agree was the vx.
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I hope its nothing! My MRI revealed nothing had changed even though I had intense new nerve pain stabbing in ear and eye. I am now on ldn low 0.25 and CBD though it has improved over time anyway. I tried a few things as had a wide range of unpleasant symptoms over 8 months. Thank God for my forum as no one lese would agree was the vx.
The MRI with preliminary review has been negative. The doctor said i might have TMJ! I don’t think it is but that is his diagnosis…I’m thinking more of an issue with vaccines and he also responded NO. Now need to see why I’m getting these issues…tinnitus, ear itch, headache on the top of the eyebrows and eyes seem to be strained, neck ache, shoulder ache and sensitive to loud noises/sound, etc…
He did tell me he’ll review the MRI again thoroughly with his imaging technician and let me know if anything in 2 weeks. Let’s hope nothing else serious that he’ll see.
What is “ldn” and CDB as mentioned above in your response? I’m not good at these abbreviations. Thanks.
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Hi there - well it might be TMJ. Funny enough I saw an audiologist recently they put a camera into ear (didnt hurt) turned out I had a lot of wax. I dont agree your doc- am on a forum with thousands who have had same symptoms as you (Neuro long haulers) and Covid Vaccine - Long Haul Autoimmune Support. LDN is low dose naltrexone. I am on 0.25 - its prescribed and compounded. I suggest if onterested you join a forum to learn re it. I no longer have any issues re nerve pain or tinnitus - but that Pfizer defintely caused issues for me for almost 8 months after. I only had one.
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Hi there - well it might be TMJ. Funny enough I saw an audiologist recently they put a camera into ear (didnt hurt) turned out I had a lot of wax. I dont agree your doc- am on a forum with thousands who have had same symptoms as you (Neuro long haulers) and Covid Vaccine - Long Haul Autoimmune Support. LDN is low dose naltrexone. I am on 0.25 - its prescribed and compounded. I suggest if onterested you join a forum to learn re it. I no longer have any issues re nerve pain or tinnitus - but that Pfizer defintely caused issues for me for almost 8 months after. I only had one.
For now I’m trying to follow his instructions to treat it as TMJ and hopefully will go away but people I know has TMJ before and none had these serious symptoms like I have now. But the main thing is that this is not recurrence of the tumor which is the most important thing for me. Don’t think any doctor at this point would say yes to this being the issues from vaccine.
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Hi there - well it might be TMJ. Funny enough I saw an audiologist recently they put a camera into ear (didnt hurt) turned out I had a lot of wax. I dont agree your doc- am on a forum with thousands who have had same symptoms as you (Neuro long haulers) and Covid Vaccine - Long Haul Autoimmune Support. LDN is low dose naltrexone. I am on 0.25 - its prescribed and compounded. I suggest if onterested you join a forum to learn re it. I no longer have any issues re nerve pain or tinnitus - but that Pfizer defintely caused issues for me for almost 8 months after. I only had one.
Hi Michele,
Can you send me the link to the Covid Long Hauler and VX related Neuro issues? I’ll join and read up on the posts. Also, I’m definitely still not sure the TMJ diagnosis either but just trying to manage these issues daily… One thing i did notice yesterday, I took 225mg of Naproxen, and boomed, i was almost back to normal, but as the drug wore out, the symptoms are back. I’m supposed to take it daily 2 times for 2 weeks but my stomach can’t tolerate this medicine, but I might take it with anti acid pills and see how long i can take with the stomach issue.
The bottom line is, at least for me, something in there is inflamed….I think same reason why some with the vaccine related issue taking steroids and after 2 weeks it goes away…some nerve is inflamed…or something is inflamed.
Thanks.
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Hi there sure: the one is Neuro V Long Haulers its a facebook group as is: Covid Vaccine Long Haul Autoimmune support.
I also joined the low dose Naltrexone support group on facebook. I feel a lot better this week btw.