Hey guys! I usually don't post on anything, but this time, I feel like I need to get and give support to those that are experiencing something similar, since I learned that professionals and friends & family have quite a hard time understanding the severity of this condition. When I say severity, don't get me wrong, It's severe for me at the moment, since I have been (suddenly) starting to experience tinnitus just over 1 month now and it seems to change very often, so I am mentally still greatly struggling with it. I am sure there are lots of you wonderful people that learned to deal with it and can continue living their life to the fullest <3
So yeah, I started experiencing tinnitus after my left ear made some weird sounds for a few seconds, like it was pushing out air. At that moment, I got happy, telling my mom that I experienced sounds way clearer. Short after it, a ringing sound started. I thought I was just tired, since I did not have a lot of sleep that night, so I went back to bed. Sadly, when I woke up, the sounds got extremely loud. The first two weeks since I started experiencing this, it was a hell. The sound became louder and less loud randomly throughout the day and at moments, it became so loud that I started panicking, crying and calling emergency. This happened twice, although, partly due to corona, help was not as easy to get.
Eventually, after about 2 weeks, it got down and I was able to get out of bed and take my laptop to start looking around on sites about what condition I might have. Before this, I never heard about tinnitus etc.
I went to an ENT and he said that my ears looked fine, with the hearing test, I had <20 dB on my right ear in which I experience the ringing the most at the moment and my left ear was perfectly fine.
Since the day the tinnitus started, I had a very sharp pain in my right upper neck and now it feels like when I try to lay down and sleep, gas bubbles explode inside my throat/neck.
Anyone ever with a similar experience or knows what to look for next?
I wish you and your beloved ones strength and health in this difficult times <3
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strawberrymilk
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I think each of us experiences tinnitus in different ways. Mine is like a continually badly-tuned radio station, louder than the engine of a car when I’m sitting in it - that is, I hear the car engine and the head noise.
Personally, I just live with it.
From your explanation, I wonder if there is something else going on, though. I would wait for a month or two then, if it’s still bad, ask for a referral for an MRI scan or similar.
Hi strawberrymilk, love the name but sorry to hear you've joined the tinnitus club.
I've had tinnitus for about 20 years but about 3 months ago I woke with my left ear screaming and sever pain in the right hand side of my neck. This was after several things happened. Firstly I had completed a hard HITTs ( high intensity exersize )session and finished it by doing some neck stretches which I do not normally do, secondly the lock down started and thirdly the stock market fell which affected my pension.
I phoned the GP, but he basically said the tinnitus is stress related, gave me some tablets to make me relax and totally ignored the neck pain.
Now, three months on, I'm adjusting to the new volume of my tinnitus it can get very loud but goes down when I'm out side. It increases to excessive levels if I do any HITTs training or with any impact on my neck. It changes when I move my head and can swap sides depending on how I lay down in bed.
I've contacted another GP and he's trying to get me an appointment with ENT, but with the current situation that will take a long time.
My neck pain is still there so I'm hopeful that when the pain goes my tinnitus will return to its previous level.
Please let me know how you progress and if you find anything to reduce the noise.
I'm having a MRI-scan tomorrow of my cervical spine/neck. Mine also increased after doing some neck stretches and also swaps sides depending on how I lay down in bed! On top of it, I am a very sensitive person and the corona virus and having online exams etc. and losing quite a bit of money myself on the stock market did give me stress as well. I like to believe that I did not get affected emotionally that much, but I'm sure I actually did. Our experience is VERY similar!
I will definitely keep you posted. Thank you for taking the time to reply and hopefully there will be progress for both of us <3 Keep me posted as well!
Your health service must be running well, ours in the UK is still shut down due to corona virus. I have managed to get an appointment with ENT on 1 August but the letter states that I should not attend until further notice, very confusing.
I really would like my GP to arrange am MRI but I think that is going to take several months.
Yes please do let me know how you get on, I may be able to take your experiences to my GP.
Dear Gary, I'm so sorry for not replying for so long. I have had a hard time to cope with this to say the least :/ The MRI was taken and only slight bulging at c5-c6 and c6-7 was noted. They concluded that this can not be the cause. Although, since the MRI was taken of my cervical spine, there were not able to fully inspect my neck, so further testing might be necessary. At the moment, I'm wating for the dental surgeon appointment to see whether my T will change when a 'root canal treated' tooth will be fixed/extracted. This will be on 7 August and I'll keep you posted after that!
Btw, there seem to be a lot more T sufferers around these months that include a stiff neck. Might it be caused the the stress levels due to this pandemic?
Finding nothing on the MRI is both good and bad, good that there is nothing life threatening and bad that there is no hint to the cause of your tinnitus. From what I've read and what my GP has told me I think this is the usual result.
I too have noticed that more people are reporting a still neck, mine is still slightly painful when I move my neck to certain positions. This is easing however my tinnitus is worse, it's in both ear now and very loud. I'm trying to ignore it but it is just too loud.
I keep reading 'positive' text that say tinnitus will get quieter with time and that we can habituate to it. The problem is that the habituation time can be from months to years. But staying positive when struggling to hear over the tinnitus is tough.
As for vertigo, as had two periods where I felt extremely dizzy, a little like seasick, but I put that down to not eating enough and over exercising. I did also have a small visual effect a couple of months ago, this was a little scary as the image from my left eye was swimming.
Keep positive and listen to the people who say things will get better.
Yeah.. very true buddy. It's not easy to cope with it when there is an acute onset and you get caught by surprise.. Just trying to stay calm atm and doing stuff to distract the mind and hoping it'll get better for the both of us. Doesn't even have to completely go away for me at this point, just need it to be bearable, so I can continue living on in a normal manner. Habituation seems hard for me, since the tone and loudness is changing all the time.. how about yours?
Hmmm, I see.. I wouldn't think that's a coincidence, I think that both our problems lie in the inner ear, close to the balance mechanism. I also had two moments of vision issues, before the acute onset. After it started, I had a few of those dizzy moments.
All we can do it stay positive and try to calmly figure out what's going on, look for answers and continue forward <3
Did these two periods that you mentioned come with increased ringing in either one of your ears?
I'll try to check this site daily from now on, so I won't miss any reply. I only noticed this reply after your comment on my new post, sorry for that!
Ohh btw, did you have any issues with hearing sounds louder than they should be at any point? I think I have a bit of hyperacusis as well since all this stuff started..
Hey Strawberrymilk, I just joined myself. I've lived with tinnitus since I was around 16, I am 62 now. I thought I was hearing my nervous system at first and it caused me a lot of stress. I didn't know about tinnitus until I was much older. Kind of made me nuts not ever being able to have quiet. That was until I decided I was going to overcome it by thinking about it in a positive way. So... I have heard from spiritual practitioners who talk about the universe being created out of the sound of OM. I decided I was going to tie this sound to that idea. It somehow gives me solace. Once in a while I just cannot make a positive connection and so I cry. But on the whole it has helped for me to make this association. I now am hearing other tones on top of the tinnitus which are driving me kookoo ( the motor of a water treatment plant I think) I am hoping I can find help with those. Also I just wanted to connect with others having audio issues to not feel so alone in it.
Pfff, I find it so hard to reply to people suffering in a way, as I am a very sensitive person.
I am really glad that you are able to look at it positively and sad that it does still affect you some times. I'm in this for just over a month now, it is really impacting my concentration and focus on my last year of studies. Also, I do not know if I can have the career I want or find the love I always imagined and a lot of other insecurities. But, if it stays for life, I think that I will be able to make peace with it just like you did. Life throws stuff our way in which we do not always have a say, the best thing that we can do is to be as positive about it as humanly possible, because at the end, we all want to life fulfilling lives
Keep being the positive person you have been and it is fine to let loose emotions so now and then. Life is always worth living, however you might struggle, there is always a way to cope with it, let's never forget that I think <3
I'm sorry if I went a bit deep, I just typed down whatever I felt from reading your comment
Always go deep when you can! So much of life is lived on the surface!
Too often our problems take over our minds and we cannot see the beauty that is always around. The beauty in nature is my antidote to a lot of negative things.
Pain does demand a lot and in the middle of it, it is sometimes hard to imagine it will get better. Although I have found even with pain you can find lessons and understand your mind is much bigger than the pain is. If your foot is hurting you'll say "I" am in pain when actually it is your foot that is in pain. Your hand is fine, your stomach is fine, your eyes are fine, your fingers are fine. "You" are not only the part in pain. You are much more.
Your insecurities sound like ones that are shared by a lot of people. I have found if I just focus on what I love to do, work hard toward my goals the things you cannot control ( like relationships) fall into place. Be patient and don't stress, you are young! And since you are the one you are with all the time, make sure you like yourself by acting and doing things with kindness. Kindness draws more kindness. Thanks for your feeling words. And good luck with your studies.
Sounds to me like something has physically changed inside your head/neck.
I'm no medic, but based on experience I'd say the weird sounds are likely to be coming from very close to your ear. Coincidentally, I've just posted a reply about "eustachian tube dysfunction", as follows:
Try pinching your nose tight and swallowing hard. That will make your ears 'pop'. Now gently open your mouth and push your lower jaw forwards slightly to un-pop your ears. That process equalizes pressure either side of your eardrums. Swimmers and frequent flyers are really prone to this kind of problem. If you've had a throat infection recently or a cold, that can wreak havoc with the tubes as well.
If your T feels much better, tell your doctor as you might have an infection in one of the eustachian tubes that needs treatment.
One other possibility if that doesn't work, speak with your dentist and find out if you have a TMJ disorder. A right-sided imbalance in the jaw joint can cause popping/cracking, T and pain on that side. Your dentist will identify this, or (preferably) an orthodontist for a full specialist assessment.
If that's all OK and the trouble persists, with the sounds you're getting at night you could do with a comprehensive CT scan with contrast or an MRI venogram of your head/neck. Ask for a referral to a neurologist, neuro or orthopaedic surgeon and talk it through with them.
Don't be fobbed off. If you're stuck with permanent T, you will get used to it in time. But you shouldn't put up with inadequate investigation at this early stage.
Thank you so much for your comprehensive reply, that trick did give a cracking sensation, but it did not silence the T for now
I remember that before all this stated, I felt a very sharp pain in my throat randomly a few times in a time span of about a month. I said to myself: hmmm, I never had this kind of sharp pain (for a very brief moment) in my throat before, felt really different. I thought I was getting the flu or something, but it just didn't happen. Then, all of a sudden, my ears started feeling very pressured, ringing and being sensitive to sounds since the 4th of May.
It definitely feels like my eustachian tubes are part of the issue here, since after the T started, I had severe cracking/popping at both sides when I chewed on bread or gum etc. I just tried it with a quite tough piece of bread and the cracking still happens at the right side.
I went to an ENT specialist on 22th of May, but he only examined my outer ear. Me and my GP found it very strange that he didn't do a thorough examination. An acquaintance told me that they were advised (on a national level) not to examine a patient's throat or nose due to the coronavirus, when not deemed necessary. I really think it was necessary considering my symptoms though..
After a lot of calls, I got myself a MRI-scan of my cervical spine/neck tomorrow to rule out a misalignment due to weight lifting or so. Also, this Friday is my next GP appointment, but I do not know what to ask or how to continue. Should I ask him to forward me to an audiologist and try to get further help from there? My GP is quite clueless himself at the moment..
Btw, my ears are still getting extremely red once a day for 10 minutes or so, before settling down again to a normal color.
Once again, thank you so much for your comprehensive reply. I am very grateful for your effort.
A gym lover and university student in his last year of studies
By the way! I also went to the dentist before and after the ENT appointment and he felt my jaw and does not think there is an issue there.
Although, I did get forwarded to a dental surgeon, due to a very severe tooth infection that got the right side of my face all swollen. That happened about 3 months ago, I suspect that the root canal treatment that he did might not have completely cleaned the infection and it spread further? Sadly the appointment is at 7 Augustus (labelled as urgent) due to the coronavirus.
Crikey, you have been through the mill. Root canal work can be the root of many ills - no pun intended. No RCT should begin unless all infection is cleared out first. There's a bit of evidence to show that RCT can cause T even when it's done without infection have been there.
If your ears are getting inflamed, you may well have some infection lurking and possibly spreading. Your dentist should check your mouth to see if there's still an infection, possibly with an X-ray, and a GP should be able to check your throat and temperature and neck lymph nodes for swelling - if the musculature is not too developed to find them. Your GP could perhaps offer you a blood test to check the white cell count for indications of lingering infection.
Remember - I am no medic, I have just been through a lot of, shall we call it, 'experience'.
If you do have a tooth/gum infection, you'll probably need a course of antibiotics from your GP or your dentist.
Whichever specialism ordered your MRI will know what they're scanning and looking for re neck and head issues. They should discuss that with you after the scan.
So, go for the scan and speak with your GP about remaining infection possibilities. A course of antibiotics might be prescribed just to be on the safe side if the ENTs aren't doing throat examinations at present. Also ease up on the workouts until you know what's going on! If your body's fighting infection, pushing it to its limits will hinder recovery. Do drink lots of water.
I have read your very helpful reply and followed all your advice, but somehow missed to reply on it... I'm so sorry and thank you a lot for the great support. I'll be going to a dental surgeon in about a month (long waiting queue) for a check on my 'root canal treated' tooth and neurologist the day before that.
Good point, I haven't trained since this all started, just a simple test yesterday to see whether it had any effect on my ears. Once again, I am really grateful to you and I hope you are doing well!
Edit: I have an appointment at the neurologist on 6 August and one for the dental surgeon on 7 August. I am going to ask the ENT to refer me to an audiologist, since they might be more willing to look further than just a simple outer ear check.
I did blood work, nothing noteworthy, BSE and CRP was at 2 mg/l, but my TSH was out of the bounds at 4.7 mU/l (subclinical hypothyroidism).. I was concerned about this, but my GP said it was fine due to the FT4 level being within the normal bounds.
I am feeling weird tasting stuff so now and then from my tooth that was root canal treated at age 15, so I am hoping that this will greatly reduce my symptoms when taken care of next month.
Gosh, lots of info to take in here. I've been through a similar "mill" and find that each specialized medicine remains compartmentalised in there thinking. Neurologists, ENTs, audiologists. The spinal issue sounds like a culprit but TMJ, (cause, wisdom teeth removal or stress) or ear infection, all of the above. How can we narrow it down?
So true.. these issues are so complicated to diagnose. Especially with the short appointments and low willingness to search further by specialists.. at least in NL..
I feel like my life is on the line here, but all I get is 10 min appointments at the GP and 5 min appointments at the ENT, after waiting a long time :S
Edit: So yeah, I have an appointment at the neurologist on 6 August and one for the dental surgeon on 7 August. I am going to ask the ENT to refer me to an audiologist, since they might be more willing to look further than just a simple outer ear check.
I did bloodwork, nothing noteworthy, but my TSH was out of the bounds at 4.7
I am feeling weird tasting stuff so now and then from my tooth that was root canal treated at age 15, so I am hoping that this will greatly reduce my symptoms when taken care of next month.
If you have an MRI brain scan, it will be incredibly loud for a long duration. I had one to rule out a tumor as the cause of my T. The facility that did the MRI(UCSF) didn't allow for ear muff style ear protection, only foam plugs. My T got severely worse from the scan. Make sure you are able to wear both-foam plugs with earmuffs over them!
I've been through all of the specialists diagnostics approach. None of them get the scope of what T is about. They throw what they have at it and walk away.
There are a few sergeouns who can read radiology to determine the cause of T if in the brain, but most don't no what to look for, and rely on a radiologists report.
My neurologist orders an epidural on my neck, an MRI brain scan with contrast, and physical therapy. All of these things made my T worse. Going back twenty years, I'd seen a leading audiologist at UCSF and he told me, everyone will try to get you to undergo every treatment under the sun, and all they will do is irritate the situation. This has proven true, thus far.
There is a disconnect between research and data that is compiled by academia, and practitioners. Until doctors record and analyze our symptoms, they will not find the cause or cure for T.
That first audiologist described it like electronics. The coclear in the ear get knocked over by loud noise, and they don't stand back up. When the coclear is bent over it touches others and conducts the nervous impulse we hear as sound. It's continuous until those little hairs stop touching each other. There is a recent medication like ear drops, that promises to revitalize the hairs to get them to stand back up. Perhaps the coclear transmits the impulse through the folical?
NOW!
This all sounds possible, but,......what about the other culprits?(scar tissue)
Infection in the jaw, TMJ, spinal injury(reduced flow of spinal fluid to the brain) reactions to medication etc. can you see any of this an an MRI? Possibly. Will counciling help? Possibly. All these things cost the patient money, but if the doctors had to refund you if they failed to help you, theyed find a cure. There just needs to be more zeros behind the number on the price tag. Right now, kimo theoropy is still prescribed on top of other cancer treatments, simply because it makes money. Prostate biopsies are prescribed against the data and science, because they make billions from them.
The thing that's gotten me this far with my T is patience. Lots of it. I'm not sure, as it keeps getting much worse how much more I will be able to adjust, but I can say that in time you learn to tolerate it.
Meanwhile, I insist on persuading clinicians to seek a cure rather than suggest that I need to become complacent. That's easy for them to say. Try walking a mile in my moccasins.
Keep busy and make sure you see the beauty in life, nature, children.....it helps.
Thank you for your powerful and detailed reply, I think I am not willing to take the risk of that MRI brain scan then.. I really respect you for having to deal with this condition for such a long time, I will likely have to do so too.
I think I will devote my life to tinnitus research and try to find more support in doing so. Ironically, my life seemed to be at a very good place, after having withstood all the hardships with family and education, my difficult childhood etc. I felt like it was my time to finally start enjoying more of life and stressing less about the challenges. Well yeah, I feel like I could still love to life, but I think I will need to devote a big part of my life and time to positively affect how tinnitus is treated or ways to improve how people are experiencing it, including myself.
Sadly, I am at an anxious and scared stage right now, telling myself how lucky I am for breaking up with my girlfriend before all this started, so I do not have to explain why I am so changed atm, not having kids or other big responsibilities etc. I hope I will become more positive as time passes, I'll try to, even if it's just for my family's sake.
I'll probably still get my master's degree at the uni of Amsterdam for Business, since that was my goal for the last 6 years and I'm finally in my last year. But, after that, I'll see how I can life, not in a way in which I will ignore this ringing, but in a way that I can contribute to improvement.
At what age did you get tinnitus, if you don't mind me asking?
Edit: BTW, is a MRI-scan for the brain louder than one for the cervical spine? Since I had that one already and it wasn't too bad. Had ear muffs + plugs in.
I'm told that a brain scan is not so loud with the ear muffs. If your doctor wants you to do it, they may have a reason for that. I've had my C-4 C-5 and C-6 scannned. It wasn't too bad without the ear muffs. The brain scan happens right over the ears and is much, much louder. the brain scan is more detailed and may take longer.
There are good MRI scanning facilities especially in Europe, which has a tougher regulation on safety regarding this issue. Just make sure you wear the earmuffs.
As for persuing a career in tinitus, well, it would be noble of you, but you may "habituate" or acclimate to the T better if you aren't thinking about it all the time. In time you may find you can function with it. I've had mine for 20 years. Only for the past 2 years has it gotten severe and most recently catistrophic.
I'm a mentally and emotionally strong person, but as of late have decided I may need a spiritual or religious ideology to find footing with my situation.
I've had many great years, with and without T and now must come to grips with my fate. I'm not giving up on my hopes and dreams, I've achieved a lot of them. As a 57 year old father of 7 year old twins, I must keep it together for my family sake.
If you need inspiration to sally forth with T, take a look at my website which depicts a great deal of creativity that helped me get through my suffering of T. :Www. Danielmerriam.com
I see, good to know! Sounds very scary to have that scan then :/ I will ask about the sounds and earmuffs etc. I understand, well yeah, only time will tell I guess, I'll definitely go and finish my masters first anyways, so I still have a year to go
I'm sorry to hear that it got worse recently.. Was there any kind of hint as of why?
Twins! That's so cool <3 I'm very happy to hear that you did not give up and are where you are now! Family is really important and we can never let them feel neglected! Yeah.. ideology is really key to be able to cope with this kind of a situation, I definitely agree.. You give me a lot of hope and strength for the future though, I will thoroughly look at your site later today and let you know about what I think!
Funny that we're messaging on two different posts, why the heck not haha
Sorry to hear you have Tinnitus, I know how horrible it is, I've had it years, have you been given white noise Maskers, as they should help you during the day, and at night, keep them under your pillow slip, just so you can hear one of them at least, or music from your phone should help, use sounds from the sea, white noise, any noises that you like, there's loads of apps, I wish you luck, try a hearing therapist if you can to see one, they'll help you, wishing you all the best,
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