Tinnitus Management Clinic — Cleveland Clinic

[IYIiKe]

→ Tinnitus Management Clinic - Cleveland Clinic

I am from Southwest Ohio. Unfortunately, my area has limited local resources for quality assistance with tinnitus.

My ENT had very little information to provide and quickly passed me off to an Audiologist who started a series of CBT visits that unfortunately did little to assist.

I saw another Audiologist, whom I confirmed via phone could assist with sound sensitivity and loudness hyperacusis. However, after the Audiogram, I was told they were still searching for people to assist with Sound Therapy, and of all places, Treble Health was offered up.

The unfortunate: Cleveland Clinic's Tinnitus Management Clinic includes an online ~2-hour session that is $200 and must be fronted. After you pay, you can obtain visits with their tinnitus specialists, who include Neurology, Dentistry, Audiology, and Psychology.

I plan on potentially seeking consults for Audiology, Neurology, Dentistry (I do have TMJ), and Psychology. Their Psychology can be virtual, but I will need to travel about three hours for the other specialties.

As my journey continues with the Tinnitus Management Clinic, I will post about my experience. I searched and didn't see anyone else sharing their experience with it.

 

[IYIiKe]

I had the web seminar today. Unfortunately, if you've been dealing with tinnitus for more than a month, I'm not sure the information provided is very helpful. They did share some good insights about the areas in the brain where tinnitus is generated, possible causes, and a few outdated vignettes about potential future treatments (they even suggested contacting Susan Shore to participate in a trial, which was amusing).

Overall, it felt more like a shakedown or toll collection. I understand it probably helps weed out those who don't truly need assistance and provides a way to help people who have no idea what's happening. However, for anyone severely afflicted, they've likely already gone through all of the general information provided, making the experience quite disappointing.

The one positive outcome was that I was able to schedule appointments with providers. My next update will be about that. I'm also looking forward to the psychological support, which can be done remotely. I've asked if I can consolidate or pre-discuss certain appointment details, as I'll need to travel for them.

 

[kingsfan]

An ENT I saw at the Cleveland Clinic main campus also suggested this.

 

[IYIiKe]

An ENT I saw at the Cleveland Clinic main campus also suggested this.

I'm feeling a bit frustrated at this point.

It's been 24 hours, and I still don't have access to the information I need to schedule my appointments. I knew it would cost $200 just to book the specialists, but come on. The appointment was already scheduled a month out.

It feels like the institution is taking advantage of me throughout this whole process. They promise a collaborative effort, but needing to schedule with each individual provider manually feels more like lip service than reality. I'm trying not to feel defeated as I push forward, using more resources for an uncertain outcome.

 

[Stayinghopeful]

I'm feeling a bit frustrated at this point.

It's been 24 hours, and I still don't have access to the information I need to schedule my appointments. I knew it would cost $200 just to book the specialists, but come on. The appointment was already scheduled a month out.

It feels like the institution is taking advantage of me throughout this whole process. They promise a collaborative effort, but needing to schedule with each individual provider manually feels more like lip service than reality. I'm trying not to feel defeated as I push forward, using more resources for an uncertain outcome.

I guess the question is, what are you hoping to get out of this?

 

[IYIiKe]

I guess the question is, what are you hoping to get out of this?

A higher level of care. My local Audiology clinic said, "We don't know how to treat hyperacusis since it isn't our specialty." The bar is exceptionally low.

 

[Nick47]

A higher level of care.

I would not be spending money on ENTs, Audiology, or a tinnitus clinic (a more expensive audiologist), for that matter. There are a couple of choices:

1. Dirk De Ridder's protocol
2. Hamid Djalilian's protocol
3. Abraham Shulman's protocol.

Tell me if I'm missing something.

 

[IYIiKe]

The tinnitus clinic at Cleveland Clinic is in my state and is also in-network with my insurance. My local audiologists admit they don't know what to do; it took them a week to refer me to Treble Health, presumably after a quick Google search. So, I haven't had a proper consultation with a true audiologist, aside from confirming that I have mild hearing loss. I'm willing to travel three hours if there's a chance it could help, even just to try something new. My insurance won't cover the kind of services those folks offer, and even if they did, it would likely involve expensive travel and time I don't have.

I believe that medication triggered the onset of my tinnitus. As a result, I'm skeptical of the theory that migraines or heavy narcotics can be considered a treatment for tinnitus.

I haven't heard of the third gentleman you mentioned.

 

[Nick47]

The tinnitus clinic at Cleveland Clinic is in my state and is also in-network with my insurance. My local audiologists admit they don't know what to do; it took them a week to refer me to Treble Health, presumably after a quick Google search. So, I haven't had a proper consultation with a true audiologist, aside from confirming that I have mild hearing loss. I'm willing to travel three hours if there's a chance it could help, even just to try something new. My insurance won't cover the kind of services those folks offer, and even if they did, it would likely involve expensive travel and time I don't have.

I believe that medication triggered the onset of my tinnitus. As a result, I'm skeptical of the theory that migraines or heavy narcotics can be considered a treatment for tinnitus.

I haven't heard of the third gentleman you mentioned.

What I'm saying, and what the other poster mentioned as well, is that you'll likely receive less support than you're getting here. Dr. Djalilian's protocol is available here, and it includes information on supplements and medications, along with the recommended dosages. The other protocols are also provided. A GP or a regular doctor can prescribe these treatments at a low cost, as the medications are inexpensive.

The only other treatments available are experimental ones, like tDCS or TMS, which standard clinics do not typically offer.

What are your expectations in this situation?

We're simply trying to save you time and effort. Treble Health are charlatans who will try to sell you a hearing aid, some sound therapy, and counseling services.

 

[Stayinghopeful]

We're simply trying to save you time and effort. Treble Health are charlatans who will try to sell you a hearing aid, some sound therapy, and counseling services.

Spot on.

 

[IYIiKe]

What I'm saying, and what the other poster mentioned as well, is that you'll likely receive less support than you're getting here. Dr. Djalilian's protocol is available here, and it includes information on supplements and medications, along with the recommended dosages. The other protocols are also provided. A GP or a regular doctor can prescribe these treatments at a low cost, as the medications are inexpensive.

The only other treatments available are experimental ones, like tDCS or TMS, which standard clinics do not typically offer.

What are your expectations in this situation?

We're simply trying to save you time and effort. Treble Health are charlatans who will try to sell you a hearing aid, some sound therapy, and counseling services.

For me, the frustration stems from feeling like I never received a thorough "first look" from an audiologist (AuD), ENT, or specialist who truly understands my individual case of tinnitus, instead of being quickly dismissed. This happened even with a group of highly-rated doctors from a well-respected institution, which I chose over my local, recently graduated audiologist who simply referred me to Treble Health for sound therapy. I also assumed that the Cleveland Clinic might offer a generally higher standard of care, making it worthwhile for me, given that it was in-network with my insurance.

I'm not sure how insurance works where you live, but in the U.S., if you go to out-of-network providers, you essentially pay out of pocket for even routine visits. If they are in-network, I pay $30 or $45, depending on the type of visit—something I'm willing to do if the standard of care is high. Out of network? That could easily run $200 to $300.

Dr. Djalilian's protocol seems to consist largely of sound therapy and cognitive behavioral therapy packages, subcontracted from ventures he previously established. It also includes a modest use of typical relaxation supplements and prescriptions for antidepressants or anti-anxiety medications. On top of that, you're given a general price for the protocol, similar to what you'd pay for Treble Health (which I believe is currently up to $4,500.00). I admit I'm naturally skeptical, but I get the same "Treble Health with a white coat" vibes from this. It was also clearly communicated during the Q&A session that the ideal target population is those with recent onset or fluctuating tinnitus—cases that are more likely to recover regardless of intervention. While it's great to see scientists trying new things, I don't see anything particularly innovative in this protocol. So why pay more for it?

If I can obtain all the ancillary aspects of Dr. Djalilian's protocol through my insurance in-network, excluding the unproven medication, then it's a no-brainer for me.

 

[Nick47]

For me, the frustration stems from feeling like I never received a thorough "first look" from an audiologist (AuD), ENT, or specialist who truly understands my individual case of tinnitus, instead of being quickly dismissed.

This is what most of us experience. There isn't much for them to examine other than:

1. Audiogram
2. Eardrum and middle ear

I've listed all the available options. You'll likely leave the clinic in the same condition. With Treble Health, you get the same hearing aids and sound "therapy" as you would from an audiologist. What you won't get are medications, as they are not doctors but rather charlatans.

You can get the medications from a doctor—they're inexpensive. These, along with some supplements, can work together effectively.

I'm not sure what your expectations are. What exactly do you want them to examine? What treatment are you expecting?

Hamid has conducted studies and published them.

 

[IYIiKe]

This is what most of us experience. There isn't much for them to examine other than:

1. Audiogram
2. Eardrum and middle ear

I've listed all the available options. You'll likely leave the clinic in the same condition. With Treble Health, you get the same hearing aids and sound "therapy" as you would from an audiologist. What you won't get are medications, as they are not doctors but rather charlatans.

You can get the medications from a doctor—they're inexpensive. These, along with some supplements, can work together effectively.

I'm not sure what your expectations are. What exactly do you want them to examine? What treatment are you expecting?

Hamid has conducted studies and published them.

My insurance will cover hearing aids if they are deemed medically necessary, which may or may not help. I have mild hearing loss between 3-8 kHz, so it would likely require weeks of back-and-forth between my audiologist and the insurance company before they agree to cover it.

Unfortunately, my local audiologist wasn't even familiar with hyperacusis and didn't know how to properly advise me. This means I don't have a medical professional tracking my condition, and if I ever become incapacitated, there won't be a record with my insurance that these issues currently exist.

My local audiologist wanted to refer me to Treble Health, but I don't think you fully understand the significant hassle insurance creates in obtaining and maintaining healthcare in the U.S.

Regarding Dr. Djalilian: Anti-seizure medications come with significant drawbacks, including potentially permanent side effects. The medications and supplements being prescribed make me feel that the line between a legitimate doctor and a charlatan for this condition is quite thin. Dr. Djalilian is charismatic and a good salesman, as evidenced by his development of various platforms for tinnitus, which are privatized and sold at significant cost to the user. I have no desire to spend thousands of dollars to be a test subject for medications that have already been studied for tinnitus without success, especially when combined with his own version of CBT/sound therapy that's priced significantly higher than comparable alternatives.

In the Tinnitus Quest Q&A session, Dr. Djalilian himself admitted that there isn't much time or money dedicated to tinnitus research, as neurotologists like him are still performing up to five surgeries a week. This leads me to believe that fundraising and commercialization are the main goals of the research, based on the previous products he's produced.

Anyone who has experienced anxiety will recognize that several of the prescribed medications are commonly used off-label for anxiety. The target audience, based on the Q&A, seems to be individuals with new-onset or intermittent tinnitus—groups that often improve without treatment. The protocol doesn't seem particularly convincing, and the claim that "tinnitus is all migraine" sounds more like outdated ideas of "bad humor" or a "bewitched ear" than science backed by biological evidence. For example, Dr. Djalilian skirts around the DCN (dorsal cochlear nucleus) theory of tinnitus in the Q&A because it doesn't align with his approach.

The studies that have been published aren't particularly convincing either, admitting that they are based on theory—something that needs to be approached with reasonable skepticism.

Since I can't afford to make my condition worse and have a family to consider, I'm unwilling to try substantial narcotics or invest thousands of dollars into what, based on initial testimonials, seems like guesswork dosages of migraine and anti-anxiety medications disguised as migraine theory.

It's really not that hard to publish in the U.S., especially when it's just a theory.

 

[AfroSnowman]

My insurance will cover hearing aids if they are deemed medically necessary, which may or may not help. I have mild hearing loss between 3-8 kHz, so it would likely require weeks of back-and-forth between my audiologist and the insurance company before they agree to cover it.

My hearing loss is mild at 4 kHz - 7 kHz, touching 40/45 dB (left/right) at 8 kHz. US insurance (two different insurers) never gave me any pushback on paying for my hearing aids.

They don't do a thing for my tinnitus, but they make for an awesome set of Bluetooth headphones.

 

[kingsfan]

My hearing loss is mild at 4 kHz - 7 kHz, touching 40/45 dB (left/right) at 8 kHz. US insurance (two different insurers) never gave me any pushback on paying for my hearing aids.

They don't do a thing for my tinnitus, but they make for an awesome set of Bluetooth headphones.

I also wonder what shooting amplified sound waves into the cochlea is doing to the undamaged hair cells. We've already observed low-frequency sounds damaging both low and high-frequency hair cells as well as higher frequencies damaging adjacent hair cells.

 

[AfroSnowman]

I also wonder what shooting amplified sound waves into the cochlea is doing to the undamaged hair cells. We've already observed low-frequency sounds damaging both low and high-frequency hair cells as well as higher frequencies damaging adjacent hair cells.

Yes, there may be some truth to that, and I try to be careful to preserve what I still have. However, listening to audiobooks and podcasts brings me at least a little pleasure. I am very much against being miserable, which is easy to fall into with this condition.

Additionally, while my mild-to-moderate high-frequency hearing loss may be partly due to a lifetime of headphone use, whatever suddenly damaged my hearing and gave me severe tinnitus that night five years ago was definitely not caused by headphones.

 

[kingsfan]

Yes, there may be some truth to that, and I try to be careful to preserve what I still have. However, listening to audiobooks and podcasts brings me at least a little pleasure. I am very much against being miserable, which is easy to fall into with this condition.

Additionally, while my mild-to-moderate high-frequency hearing loss may be partly due to a lifetime of headphone use, whatever suddenly damaged my hearing and gave me severe tinnitus that night five years ago was definitely not caused by headphones.

Sorry, I was referring to using hearing aids as hearing aids, not as earphones. That's probably fine as long as the volume is low enough.

 

[slc]

My insurance will cover hearing aids if they are deemed medically necessary, which may or may not help. I have mild hearing loss between 3-8 kHz, so it would likely require weeks of back-and-forth between my audiologist and the insurance company before they agree to cover it.

Unfortunately, my local audiologist wasn't even familiar with hyperacusis and didn't know how to properly advise me. This means I don't have a medical professional tracking my condition, and if I ever become incapacitated, there won't be a record with my insurance that these issues currently exist.

If you do get insurance to cover hearing aids, I strongly suggest considering devices that produce pink, white, or brown noise. In my case, pink noise provides a slight sense of comfort. I use these devices when my tinnitus becomes severe.

As for audiologists and even ENTs, there is often little they can do. An ENT may check for something out of the ordinary, such as a ruptured eardrum or a brain tumor—anything unusual. They can also prescribe stronger medications if you're considering that option, especially if your situation feels desperate.

For an audiologist to be unfamiliar with hyperacusis is shocking. What kind of training did that person receive? Wow, just wow.