Chronic Tinnitus and Other Issues - Looking for Treatment in Boston

January 12, 2019 12:58 PM

I've had chronic, constant tinnitus for 6-7 years now, and was told at the time it started that I would just have to "learn to live with it." I also grind my teeth. Since then it has continued to get worse, even after cutting out things like concerts and headphones. I'm having new symptoms that I think are related, and am looking for advice on what sort of specialist to see, as well as any doctor recommendations one might have in the Boston area, and lastly some sort of general strategy to take control of my health issues.

I'm just going to list out some of the symptoms I'm currently experiencing. I believe them all to be possibly related. I haven't had a consistent GP since I was in high school (I am currently 26 and am male), and while I could go to one to get referrals, I'm trying to sort of skip that step. I have been to multiple doctors who have not taken my conditions seriously. I work long hours and am absolutely exhausted for most of the week, going back and forth from doctor to doctor is not something I think I am capable of, which is why I have waited so long to seek help and treatment for these problems. I'm looking for advice on what sort of specialist to see, and if anyone has experience dealing with these issues in Boston perhaps specific doctor recommendations. Mostly I'm looking for advice on how to get out of my spiral (new issue crops up -> total panic -> issue becomes "normal" to me -> ignore issue -> issue intensifies or new issue crops up -> repeat).

-Tinnitus - In 2012 when my tinnitus started, I saw one of the leading tinnitus specialists in the country. This guy was on the covers of magazines and stuff. He's the one who told me to learn to live with it. It's been seven years since then and I'm not sure how much longer I can deal with it. The tinnitus gets worse over time, mostly through "spikes" where I experience an intense new frequency for a period of time, which then fades into what feels like hearing loss. I could get used to it and live with it if it was at a constant level, but the fact that it keeps getting worse is becoming untenable. I have cut out concerts and for a long time have only used an earbud in my right ear, but despite that both ears continue to get worse, seemingly at completely random times. I would also like to see a therapist for this, but for now finding a doctor to figure out why it's been increasing is the best I can do.

-Teeth Grinding - I have been grinding my teeth for years. I now believe this to be related to the tinnitus, but in 2013 when I saw the ENT and also a dentist about these issues, neither doctor made a connection. The dentist I went to was the wrong choice, I had to explain to him that I needed a mouth guard, not the other way around, and he didn't attempt anything to figure out WHY I was grinding. I got fitted for a guard that I wore for about two? years, but I was in the middle of a very dark period of my life where I was drinking heavily every night and stopped wearing it until my teeth changed shape and the mouth guard no longer fit properly. Around this time I also stopped brushing my teeth and I think I also have gum disease, I would like to get this checked out but my other issues are a higher priority.

-Facial Numbness - This started about six months ago, along with increased pain in my jaw from clenching. The bottom of my jaw will intermittently feel numb or tingly, never painful just wrong. This comes and goes, and also is accompanied by a pressure or fullness in the ear as well as sometimes pain in my temples.

-Visual Noise - I have experienced "noise" in my vision since around the time my tinnitus started, taking the form of white dots. Think of film grain on old movies - that's what it feels like. I have learned to live with this, but it seems to have gotten worse at some point recently, in the last two or three months. This makes it very hard to see in the dark, and also difficult to get an eye exam done for my nearsightedness because when I am shown two lens options they almost always both look bad.

So yeah. I'm thinking all of this could be the symptoms of some sort of TMJ but obviously I am not a doctor. I apologize for the big confusing info dump but it feels like the best way to explain what I'm looking for. I really do not want to go see a vision guy for the vision problem, a dentist for the jaw problem, an audiologist for the hearing problem, etc. All of these issues feel like the symptoms of whatever condition is causing them, when one gets worse so do the others, and I'm looking for a specialist who will take them all into consideration. I do not trust doctors and have had a very long road getting to this point but I really need help dealing with this stuff. I am only 26 and if it continues to get worse at this pace I'm not sure I will manage. I have severe anxiety and depression due to these issues, and I just lost a stable source of income that means I don't know how I'll be paying my bills in the near future. I just feel, overall, entirely and completely overwhelmed in life, and the fact that my head is constantly in a cloud from all these sensory issues is the center of that storm.

posted by JimBennett to Health & Fitness (12 answers total)

I recommend you check out the book "Unlearn Your Pain" by Dr. Howard Schubiner and also read Dr. John Sarno.
Their theory is that many of the kinds of issues you describe, as well as chronic back and or neck pain, fibromyalgia, and various other "syndromes" that come and go and seem to have no tissue/structural damage causes are what Schubiner names as a mind/body syndrome. This isn't "it's all in your head." It's where all the time spent worrying about, thinking about, fighting the symptoms actually spark the autonomous nervous system and create neurological pathways between the brain and the "pain" and that the original cause, while sometimes a physical injury, is usually emotionally based and is the body's way of manifesting the unprocessed emotional issues.

I just recently cured myself of coccydynia and chronic back pain by following the month long program outlined in Scubiner's book and working with a psychotherapist who helped me process some intense emotions that I had been holding for a very long time. I had a 50% reduction in symptoms/pain as soon as I really believed this is what was causing my pain (after seeing numerous doctors who offered only pain meds or steroid injections, and almost 6 months of intense fear that I had a tumor causing the intense pain in my coccyx and my insurance wouldn't approve and MRI!) by the third week of the program I was pain free for the first time in years.
posted by Plafield at 2:25 PM on January 12, 2019 [9 favorites]

I'm on mobile so i can't link right now, but look into the amino acid NAC (n-acetyl cisteine) for tinnitus.
posted by rhizome at 2:33 PM on January 12, 2019 [2 favorites]

When I had tinnitus, my GP referred me to a neurologist.
posted by woodvine at 2:56 PM on January 12, 2019 [2 favorites]

That reminds me, if you live where there is a dental school, sometimes there's an ear school nearby where you could get a full test and workup.
posted by rhizome at 3:49 PM on January 12, 2019 [1 favorite]

It seems like a dentist might be a good first option. There's some evidence that an upper jaw that hasn't developed forward enough can cause a host of issues like these, including tinnitus. These youtube videos explain this theory, known informally as 'mewing.'

I had TMJ, grinding, and a lot of jaw pain, and found a dentist who did facial orthotropics (USA map). It's been a game-changer. Feel free to memail me.
posted by tooloudinhere at 4:09 PM on January 12, 2019 [1 favorite]

I came here to say something similar to what plafield said.

I do myofascial release and am trained to work on the TMJ and head/skull, but we treat the whole body instead of isolating things into specific issues and saying, no I can't work on that if it's in a different region. IMO the inner ear and TMJ are absolutely affecting one another and dysfunction in one can cause dysfunction in another. Your type of case is common in our patient population.

I have treated vertigo and tinnitus patients by releasing the jaw and muscles used in chewing or grinding/clenching. Similarly, TMJ dysfunction can cause cranial problems which can affect your vision. I've had people go back to moments of absolute rage or grief in their life that they did not process, usually due to dissociation or fear, and saw them let some of it go as their jaw was being worked on. Have also had people go back to the moment of a head injury or whiplash type accident and let go of some of the fear; commonly this happened when working in the neck and base of the skull, but I had someone unwind from a car accident via TMJ work as well.

Please consider seeing a physical therapist or occupational therapist who practices Barnes myofascial release, as they can treat your whole body structurally, as well as get into the emotional/psychological side of how your nervous system is processing unpleasant emotions and physical pain. You may find it helps the anxiety and depression, and no one will push you to go farther than you are ready to go. There are other forms of manual therapy that work like this as well: craniosacral therapy, somatoemotional release. So we don't have a monopoly on it by any means.

If you are tired from being shuttled from one specialist to another and being offered drugs or injections or temporary fixes like a mouthguard, you might benefit from this kind of approach.
posted by zdravo at 5:51 PM on January 12, 2019 [3 favorites]

There are a variety of resources listed at the MeFi Wiki ThereIsHelp page, including for access to health insurance and health care - for example, the Massachusetts Association of Community Health Workers may be able to help you find assistance with care coordination and health insurance, or more specifically, the Boston Community Health Worker Initiative may be able to refer you to local assistance.
posted by Little Dawn at 7:24 PM on January 12, 2019 [1 favorite]

I have tinnitus and have seen an audiologist and an ENT surgeon. The surgeon recommended seeing a psychiatrist who specializes is cognative behavioral therapy, who will essentially train me to block it out. I haven't been yet but plan to give it a try.
posted by emd3737 at 3:53 AM on January 13, 2019 [1 favorite]

I am going to recommend a dentist. Dr. Maria Longo works on correcting your bite to correct the issues caused by grinding. I have had extensive work done and it has affected my whole face and head for the better. Tinnitus was not an issue for me but I would consider a consultation with her.
posted by InkaLomax at 5:55 AM on January 13, 2019 [1 favorite]

For while figuring it out: I found that a very loudly ticking clock helped sleep while having tinnitus.
posted by meepmeow at 6:34 PM on January 13, 2019 [1 favorite]

Think of film grain on old movies - that's what it feels like. I have learned to live with this, but it seems to have gotten worse at some point recently, in the last two or three months. This makes it very hard to see in the dark

I am concerned about whether you have mentioned this symptom to any medical provider recently, because according to Medline's overview of amaurosis fugax (temporary loss of vision in one or both eyes), and based on my own experience after reporting similar symptoms to a dental assistant, it may be related to smartphone use, but you may also need urgent eye testing to rule out potential emergency medical conditions.
posted by Little Dawn at 6:49 PM on January 13, 2019 [1 favorite]

I have been grinding my teeth for years. I now believe this to be related to the tinnitus

IMNAD, just someone who works in hearing research (not tinnitus specific anymore). TMD and tinnitus can be co-morbid and there's some evidence that treating TMD may help alleviate some people's tinnitus. The quality of the evidence isn't the strongest (possible placebo effects, etc), but here's a systamatic review if you're interested.

I know you've not had the best experience before with medical providers, but I want to encourage you not to lock onto one idea and then get discouraged if it doesn't work out. I've seen people improve after addressing bite issues, but I've also seen people improve after stabilizing their blood pressure, managing severe sleep apnea, getting a more ergonomic work set up, getting hearing aids (when hearing loss was present), CBT, or tinnitus retraining therapy. Tinnitus is called a symptom* not a disease: i.e. there's not a single cause of tinnitus.

If you can, it would probably be helpful to look for a facility that thinks of the big picture when it comes to tinnitus. I'm not familiar with providers in Boston, but if you look at a places online literature, you want to see them discussing multiple potential causes of tinnitus (ideally if they don't address all of them they can at least refer out to other specialists as appropriate). Again, no direct experience, but at least Boston Medical Center's website suggests they're thinking globally.

In the mean time, enriching your auditory environment can be helpful: have a fan running or music playing (not blasting) playing when you're in a quiet room.

*I don't even like calling it a symptom, some people have non-bothersome tinnitus without an underlying pathology that's cause for concern.
posted by ghost phoneme at 1:13 PM on January 17, 2019 [1 favorite]