Is My Tinnitus Caused by a Neck or C-Spine issue? Or Am I Just Going Crazy?

Discussion in 'Support' started by Syb, Apr 6, 2021.

    1. Syb
      Pensive

      Syb Member

      Location:
      Montreal
      Tinnitus Since:
      1990, 2020
      Cause of Tinnitus:
      Hearing loss & possibly a neck / C spine issue?
      Hey. I would love to hear other peoples’ opinion on my situation... Especially if your tinnitus is neck related.

      I just can’t make sense of my condition. A few things seem to point to the cause of my tinnitus being my neck, but I’m not making much progress... and nobody really knows what to do with my case.

      Here’s a recap if it helps... (Skip to “why I think it’s my neck” if you don’t need the background.)

      I’ve had very mild, low pitched, humming tinnitus for as long as I can remember. Not bothersome. Could only hear it in complete silence or with my ears plugged. It spiked after a mild ear infection and/or use of decongestants 6 years ago and that’s how I really became aware of it. It bothered me for a little while and then I (re)habituated. I didn’t do a hearing test at the time.

      Also relevant: 4-5 years ago, I was diagnosed with occipital neuralgia on the left side. Cause unknown, other than poor/forward head posture. I was prescribed Pregabalin 150 mg at night — I know it can be ototoxic but I really don’t think it affected my tinnitus in the 4-5 years I’ve been taking it. It finally made my horrible headaches and neck pain go away. I didn’t do any physical therapy for it because I was broke and had (have) crap insurance.

      Holidays 2020: I purchased ANC headphones. Used them about 2-3 hours a day for 3 days. Listening at reasonable volume, mostly to classic/piano music. Then I started getting a “new”, high pitched tinnitus. Mostly in my left ear, but also in my right. Initially I thought the headphones and/or ANC caused it, so I immediately discontinued its use. The same day, I had noticed my jaw felt sore. Probably from the clamping of the headphones.

      This new tinnitus started cycling between multiple sounds the following days. High pitched, crickets, cicadas, whistling, some crackling noise in my left ear — which eventually became reactive to sound. I startled at loud sounds when my tinnitus was loud. Its volume started fluctuating a lot. In all the years I’ve had tinnitus (I’m 30), I’ve never experienced anything like it.

      My “old”, low pitched tinnitus hasn’t changed, by the way. It’s still there, still sounds the same as ever.

      I also started experiencing neck discomfort during that time.

      Then I noticed I could modulate my tinnitus with my jaw and neck. (More on that later.)

      I saw an audiologist a week later, who told me 3 things:

      1) I have symmetrical, mild hearing loss on both sides, which she believes is what causes the “old”, low pitched tinnitus I’ve always had and could be a birth defect;

      2) according to her, the “new” tinnitus is a different tinnitus, is somatic in nature since I can modulate it, and because it constanty changes and is asymmetrical;

      3) despite the reactive aspect of my tinnitus, my loudness discomfort levels are normal and I don’t have hyperacusis. She also insisted that there’s no way listening to music with ANC headphones only for a couple hours, and at a low to moderate volume, could’ve caused damage. Eventually, she referred me to a hearing disabilities rehab center because she doesn’t know what to do with my case (with regard to the reactivity of my tinnitus) — I’m currently on a waiting list.

      The ENT didn’t really have a diagnosis for me (yet?) regarding my “new” tinnitus and wanted me to do a mastoid process CT scan, because she also believes my “old” tinnitus could be a birth defect and wanted to confirm this. She also wanted me to do a MRI of the brain and ear canal. I’m still waiting for the results.

      I saw a physiotherapist twice, who thought it was caused by my neck (because of some restricted movement) and also my nervous system (I am very anxious these days... because of the tinnitus). She said she didn’t think she was qualified to help me, however, so I stopped seing her.

      I started doing acupuncture for my anxiety and my neck, as my GP suggested it. I went three times so far... Not sure how much the actual acupuncture helps (I mean, it is relaxing)... But she also did cupping massages of my traps the last time I went, and all my neck tension went away and it reduced my tinnitus for a couple hours. Interesting. Maybe because of the increased bloodflow to my head? Or released tension in my neck?

      I started doing osteopathy as recommended by my acupuncturist. I also went three times so far. He said I have a lot of tension in my chest area, which pulls my shoulders forward and can cause pain in the traps and neck. Then, last time I went, he said (I believe that’s what he said?) that my C1 vertebra was a bit shifted to the left and that I have a lot of tension in that area. Which could possibly explain why my “new” tinnitus is more problematic on the left side, and maybe also causes my occipital neuralgia. He also said it seems like my SCM muscles are tense and might be pulling my head forward and causing tension in my jaw.

      My GP couldn’t do much for me so far, other than prescribe Clonazepam 0.5 mg when I have too much anxiety (plus it helps lower my tinnitus); she also suggested I take some Pregabalin during the day as well to see if it helps... but it doesn’t do much so far other than maybe make me a little less anxious.

      That’s it for the recap.

      Why I think it’s my neck (or C-spine):
      • It’s changing in volume and pitch or sound effects on a daily basis, sometimes even throughout the day, and for no apparent reason. It does seem to get louder and more intrusive with pain and inflammation in the head, neck & traps.
      • On my bad days, it changes to a high pitched, loud sound in in both ears, although usually louder in my left ear. On my good days, though, the tinnitus goes back to a soft cicadas sound, only in my left ear.
      • It’s not always reactive. And it’s pretty much only reactive in my left ear. It’s especially reactive when my tinnitus is louder, and when I feel pain or stiffness around my neck and traps. And when I’m very anxious.
      • For the first couple of weeks, muscle relaxants (Cyclobenzaprine 10 mg) helped lower the volume of my tinnitus. It hardly does anything now other than help me sleep because I’ve been taking them for three months (my GP said it was fine).
      • Sometimes, anti inflammatory medication (Aleve) seems to help a bit with loudness. Same goes for Benadryl, for some reason.
      • Heat and hot showers help. Showers actually make my tinnitus a bit more quiet for a while — they even suppress my tinnitus for a few minutes sometimes.
      • Depending on which side I sleep, the volume of my tinnitus changes. Sleeping on my left side will lower the volume of my tinnitus on that side, and the right side starts getting slightly louder (???).
      • Lately, some days, I wake up with almost no tinnitus, or even no tinnitus at all... and then when I start stretching, rotate my neck or get up, the tinnitus comes back.
      • My tinnitus is slightly louder when I bend my head backwards, and slightly quieter when I bend my head foward. Chin tucks also affect the volume of my tinnitus. So does clenching my jaw.

      A few of my specialists seem to agree with the possibility that it’s neck related... Yet it feels as though none of them really know what to do with my case. Even my osteopath seems to be a little stumped.

      For the past weeks, I’ve also been doing a lot of stretches at home — SCM muscles, C-spine, traps, you name it... I think it helps a little? (However, the soreness that comes with it makes my tinnitus louder for a little while.)

      ...But here’s the thing. It’s been over three months, and I feel like I’m making no real progress. I’m not really feeling that much better. While I sometimes get quiet mornings (although it only lasts for a few minutes, or an hour at best), I still get days that are as bad as my first couple days. All these specialist appointments cost me a fortune and I see no major improvement yet.

      Am I just being impatient? I’m really starting to second guess myself and get discouraged.

      Is it really my neck? Or am I just trying to... make up a reason for my tinnitus, out of desperation?

      I feel like I’m losing my mind. I’m even starting to think, what if it ISN’T my neck? What if it was the headphones after all, even though my hearing specialist says it’s impossible???

      My GP and ENT have no diagnosis for me at this point and I just don’t know where to go from here. Should I keep doing physical therapy? Should I just give up and focus on habituating (even though I don’t know how someone can habituate to a tinnitus that’s different everyday)...?

      Anyone with a similar experience...? Any “neck tinnitus” specialists here that could maybe validate my speculations?

      Any help or advice would be really appreciated, please... Thanks.
       
      • Hug Hug x 2
    2. MrAttention

      MrAttention Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Idnk
      Hi Syb,

      My story is a bit similar. I had tinnitus for already 12 years. I habituated and forgot how it sounded and if I still had it. However, 9 weeks ago I woke up with a high pitched ringing sound in my right ear. After 3 weeks and seeing an ENT, he told me it could be neck or jaw related. I am in physical therapy now. It helped a bit but what helped more is that I lost part of the anxiety and the sound went a bit in the background.

      Still my anxiety is here and I do not have "good" days. I would say I have days where I can live and enjoy some hours and days where I think only about this tinnitus. The reason is the same as yours: IT CHANGES ALL THE TIME! The loudness is mostly the same but the tones are so differently. I am still trying to figure out why...

      It is the same as for you. When I wake up, it is gone, some minutes later some electric sound joins. After going to the toilet a high pitch sound hits in and during the day it changes a lot. I also can just sit on the sofa and listen how it changes by doing really nothing and having no anxiety or stress! It makes me crazy as well...

      Maybe we are just focusing too much on the tone?
       
      • Hug Hug x 1
    3. AUTHOR
      AUTHOR
      Syb
      Pensive

      Syb Member

      Location:
      Montreal
      Tinnitus Since:
      1990, 2020
      Cause of Tinnitus:
      Hearing loss & possibly a neck / C spine issue?
      @MrAttention, oh man, you’re right. Your case is very similar to mine.

      Clearly the fact that we pay attention to it too much doesn’t help — especially in my case, I still get anxiety from listening to and for it (is it reactive today? is it also going to be in my right ear? etc.)... But it is still relatively new to us, so I try to be... tolerant of the fact that it still bothers me and sometimes scares me. I’m getting a little more “mentally flexible” about my whole situation, but... well, I still have a long way to go.

      Anxiety makes it worse, true, but just like you, there are days where I feel (almost) perfectly calm and it’s definitely still there, although not as intrusive. And I wish I could simply accept that, but... knowing there’s (very most likely) a physical cause makes me want to keep investigating and try to fix what’s causing it.

      It’s hard to habituate because, first, as you said, it’s constantly changing. But also because personally, I haven’t given up yet on trying to fix it just yet. I just... don’t know how. And that’s what frustrates me the most.

      Three months in, I’m more frustrated and discouraged or depressed than anxious. I do sometimes get anxious when it’s very loud or reactive, but I think I handle these bouts of anxiety better than I used to.

      Still. There’s gotta be a way to fix it if it’s physical, right...?

      (Just now, I did a little cleaning spree, and bent my head weird while picking up something on the floor — while wearing a padded neck brace to avoid rotating my head too much, mind you — and somehow the tinnitus got louder and started affecting my right ear, too. Ugh. It’s so frustrating!)

      Anyway...

      Did your ENT or physical therapist recommend a specific type of physical therapy?

      Also, any idea at all what could’ve caused your tinnitus?

      I know that in my case, poor posture & a not so ergonomical pillow could be the culprits... With the pandemic I’ve spent so much time at home being stationary — either working from home in, again, a not so ergonomical setting — or spending my free time reading, browsing the internet, watching Netflix and gaming on my (terrible) couch...

      I remember that when this tinnitus first started, I was slouching on the couch with my head bent weirdly, looking at my iPad while wearing my (somewhat heavy) headphones... Kind of a recipe for neck pain, in hindsight.

      ...But then again, maybe I’m looking too hard for a cause when maybe there isn’t actually one and my body is just freaking out for no clear reason? Who knows???

      In any case... Keep me updated if you feel like it? Since we seem to have similar cases, I’d be interested to know what works for you (or what makes it worse).

      Hang in there.

      EDIT: @MrAttention, nevermind me asking for the cause, I just read your thread.
       
    4. MrAttention

      MrAttention Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Idnk
      I fully understand. I am scared that it will get louder in a few years or months and I can not take it. Right now it is maskable by most of the outside noise, however, hearing it at work with a fan on and at home while watching tv... It really bothers me that it changes its tone so much. I don't know how to habituate. I started with an Antidepressant and it helped a bit. I was in a heavy depression and I am scared to fall back into it. It is so frustrating.

      Again this morning I had only a rustle on my left ear (could be because of ear wax on my eardrum - the ENT couldn't resolve it last time). After some time the high pitch sound started in my right ear and during the day at work it got worse. I really don't get it. I think that mine is more because of jaw then neck. I have some clicking in my jaw and can modulate the tinnitus by moving my jaw.

      Additionally, I often got ear fullness which I can resolve by moving my jaw left and right for some time.

      In the beginning I also had hyperacusis but I didn't know what it was. Therefore, I went once a day for one hour to a noisy train station. I was lucky that it resolved after two weeks.

      My ENT referred me to a physical therapiest who focus on neck and I also went to another one for my jaw. The dentist said he sees no TMJ... But I will get a mouth guard on Friday anyway... If someone could ensure me that it will not get louder even if the tone changes, I would be so happy.

      The last time with the noise induced tinnitus it was much easier because I knew it was my fault and it can happen. The loudness was moderate as well... This time with no cause and the ever changing tone it is so hard.

      How is your day? Do you see a physical therapist who is specialized in the neck area?
       
      • Hug Hug x 1
    5. AUTHOR
      AUTHOR
      Syb
      Pensive

      Syb Member

      Location:
      Montreal
      Tinnitus Since:
      1990, 2020
      Cause of Tinnitus:
      Hearing loss & possibly a neck / C spine issue?
      @MrAttention, regarding your tinnitus possibly getting louder over time... From what I understand, if it really is caused by your jaw (or neck — as far as I know, the jaw and neck can affect each other so probably don’t completely exclude that possibility?), if your jaw were to worsen, it could potentially affect your tinnitus. But if you’re already in physiotherapy and getting a mouthguard, you’re already doing everything you can and that’s what matters the most. And hopefully your physiotherapist will be able to help you improve it or at least get it under control, right?

      I often hear mine over the sound of the TV (or anything I do, really) so I understand your pain... Something that sometimes helps me is, when I notice it, I acknowledge it — yes, it’s bothersome — but I try to gently shift my attention back to what I was doing before strong emotions take over. I’m hoping that by constantly repeating this process, my brain will stop identifying this sound as a threat, only an inconvenience. I mean, there was a time when my hearing loss tinnitus gave me a ton of anxiety... and now? When I wake up in the morning and my somatic tinnitus is quiet, I’m legit happy to hear my other tinnitus. It’s almost comforting — it’s been my “normal” for so many years.

      So I believe it’s possible to change how we feel about our tinnitus and how we react (or not) to it. It just takes time and patience. And ideally, psychological support (look into “acceptance and commitment therapy” if you’re interested, it helps me)... and medication if your doctor thinks it’s appropriate.

      My GP and I discussed the possibility of trying an antidepressant, but I have tried 3 different types in the past for depression, and they all made me feel much worse (I felt ill all the time, and severlely suicidal). So we decided we wouldn’t go that way. My ENT wanted me to try an antidepressant as well, but the one she suggested is one I’ve tried in the past to improve my sleep and it only gave me intense palpitations and made me sweat buckets. No thanks. I’ve overcome severe anxiety & depression (caused by untreated BPD) in the past only with therapy... so I’m optimistic that I will get my emotions related to the tinnitus under control eventually, when I start therapy.

      I did see a physiotherapist for two sessions but unfortunately she didn’t think she could help me. She said I should probably get my nervous system under control first as it probably made my situation much worse (I mean, she’s not wrong). Hence why I started exploring other options, such as osteopathy & acupuncture. I’m going to try getting a professional neck massage next week to see if it helps. (I still do the stretches my PT recommended... they help a little I think.)

      The hearing disabilities rehab center just contacted me today to fill a form so I can start the program ASAP. They have tinnitus specialists so they’ll be more qualified to assess my situation than my current audiologist is. And I would also have access to physical and psychological therapy for free (thanks, Canada health services). Not sure how that will go but it can’t hurt to try.

      Today I woke up with no somatic tinnitus. I sat up. I started hearing a very light hissing. I already knew what today’s “sound effect” would be — the one I hate the most, the super high pitched, reactive loud tone. This usually gives me anxiety... but for some reason I couldn’t bring myself to care today. I had too much work & chores to do at home to give it my undivided attention. I acknowledged it, said out loud “this sucks, but whatever, I don’t care” and moved on with my day. Every time I noticed it again — every 5-10min or so at first — I acknowledged, “yup, still sucks, whatever”, and kept going. No anxiety. I experience some negative emotions towards it, for sure... but I want to train my brain to stop reacting so strongly to it so. Yeah. It’s working for me today. We’ll see how things go tomorrow, depending on which sound effect I wake up with (lol).

      Something similar to this happened to me recently (the indifference to tinnitus). I had the flu last month and got even more sick than when I had COVID-19 last year — I could hardly breathe for a whole week. And my brain was so entirely focused on trying to breathe and fighting this virus that I (it, my brain) didn’t pay attention to my tinnitus at all most of the time. When I did notice it, it was super loud and annoying, but I just didn’t have the... mental resources to pay attention to my tinnitus. Which was kind of nice. I don’t know if I’m making sense? I know I can ignore it. I just gotta get my brain in a state where it can’t afford to care about it too much.

      Anyway... I’d say my day is going better than anticipated. I feel as though all my mindfulness & meditation practices are starting to affect positively my... levels of distress towards my tinnitus. I feel as though I’m starting to slowly accept that I don’t have control over the tinnitus for now, only over how I react to it. I still have a long ways to go but. Still. It’s a start.

      I know it’s super hard because I do it all the time, but if possible, try not to anticipate or start thinking about the future too much (the “what sound will it be today? will it bother me? will it get louder” etc.). I tend to catastrophize a lot and it’s the absolute worst thing we can do because we just feed our anxiety and depressed moods.

      Try to stay in the present moment — if it’s a bad day, I try to tell myself that this present negative state of mind is only temporary. (Especially with our ever changing tinnitus, every hour is a surprise lol.) If it’s a good day, I try to make the most of it but also try not to hold onto it too much because, again, I know it’s temporary. There will be ups and down — lots of downs these days, but I look forward to the next ups... and I also try to make them happen.

      While I’m not ready to stop fighting to find the cause and hopefully fix it, or at least improve it, I think it’s also important to accept, despite me, that I have no control over some aspects of this condition, as infuriating as it is. I know I’m already doing everything I can to try and improve my situation and that has to be enough for now.

      One day at a time. Keep going to your appointments, get a mouthguard if you think it might help... I know wearing a neck brace help stabilize my tinnitus when I feel like it’s getting louder. Or doing meditation & deep breathing exercises to calm my nervous system (physically and mentally), self massages, stretching... Find what works for you.

      And try not to give your tinnitus too much power. I feel like the more I notice it without allowing a strong negative reaction to happen, the more I’m able to put it in the background. (Temporarily. I have to repeat this process every couple minutes, but still.) I was able to write most of this message without paying it attention... even though I’m literally talking about it.

      Be patient and be kind to yourself. We’re going to be okay. We just have to be patient. :huganimation:
       
      • Hug Hug x 1
    6. Keith Handy
      Worried

      Keith Handy Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Stress + sleep deprivation + noise
      Writing (or talking) about tinnitus and hearing in general is the easiest thing for me to do, out of everything. It's thinking about other things for more than a few moments at a time that I struggle with.
       
    7. MaryA

      MaryA Member Benefactor

      Location:
      Tampa, FL
      Tinnitus Since:
      02/2021
      Cause of Tinnitus:
      Moderna Vaccine
      @Syb, I was looking into prolotherapy with Dr Ross Hauser. I recommend you check out his videos on the internet. Very informative.

      Caringmedical.com

      I have no affiliation with them, but had my tinnitus come from cervical instability I would've gone there. Hope this helps.
       
      • Informative Informative x 1
    8. MindOverMatter

      MindOverMatter Member

      Location:
      Norway
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Unknown (possibly stress related, and later sound induced)
      Interesting thread. I have many of the same experiences regarding jaw, neck, modulating of sound, fluctuation, reactivity, ear fullness from time to time and so on.

      @Syb, regarding anti-depressants. Even though I've had many spells with anxiety due to this "condition", I've never used them myself. But I have good experience with natural remedies such as Holy Basil Extract to calm down and lower/normalize cortisol levels. It is also a great sleep aid.

      At the moment I've just started testing out Bacopa Monnieri too (std. to 12% Bacopa Glycosides) 250 mg, before bed. It is said that it has to be used for a minimum of 2 months before full effect is seen. For stress and brain inflammation.
       
    9. AUTHOR
      AUTHOR
      Syb
      Pensive

      Syb Member

      Location:
      Montreal
      Tinnitus Since:
      1990, 2020
      Cause of Tinnitus:
      Hearing loss & possibly a neck / C spine issue?
      I think that's 'normal' within the first couple months... I just keep bringing my attention back to what I'm doing or whatever else I can hear and the more I practice this, the better it gets. Of course it's often much harder to do on my bad ear days but. Yesterday was what I'd consider a pretty bad day and I managed okay, all things considered. I think all my time spent practicing mindfulness & meditating every day is finally paying off (a little).

      @MaryA, thanks for the info. I only read a little about prolotherapy but I’ll look more into it.

      @MindOverMatter, interesting, I’d never heard of those two... herbs? supplements? Although I don’t want to try too many new things at once. I already started Magnesium bisglycinate in January, then Omega-3 & Curcumin last month to hopefully reduce inflammation — for these last two, however, it typically takes a few months to see results so I’m just... biding my time to see if they do anything. The Magnesium helps with anxiety to an extent, if anything.
       
      • Like Like x 1
    10. MindOverMatter

      MindOverMatter Member

      Location:
      Norway
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Unknown (possibly stress related, and later sound induced)
      @Syb, stick with Omega-3 and Turmeric (or Curcumin). Great combination for inflammation. I use them as well. Just be careful with Curcumin when using for a long time as it may deplete Iron.

      As you say, to find out what actually benefits you, it's smart not to mix to many supplements in the start.

      They are Ayurvedic herbs, also refered to as Tulsi (Holy Basil) and Brahmi (B.Monnieri):

      sonima.com/food/ayurvedic-herbs/
       
      • Informative Informative x 1
    11. AUTHOR
      AUTHOR
      Syb
      Pensive

      Syb Member

      Location:
      Montreal
      Tinnitus Since:
      1990, 2020
      Cause of Tinnitus:
      Hearing loss & possibly a neck / C spine issue?
      @MindOverMatter, ah crap, thanks for the warning regarding Turmeric! I’ll be more careful in the future and research my supplements better before I start taking them... Time to increase my iron intake, in that case, since it’s already pretty low.
       
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