NeuroMed Tinnitus Program — Founded by Dr. Hamid Djalilian

[marqualler]

Is it just me, or does this study seem poorly designed? There's no control group, a small sample size, and the outcome measures are subjective.

I believe they have completed a larger clinical trial, with the results expected to be published soon. Dr. Djalilian mentioned this on one of his slides during the Tinnitus Quest webinar a couple of weeks ago.

I spoke with Dr. Djalilian about this specific result, and in July, he informed me that he expected the results to be officially published within the next six months.

→ This is the clinical trial.

→ Here is a more up-to-date article that digs more into the entire basis of the NeuroMed program.

 

[Tex]

I haven't been on here in a while. I still go annually to see a neuro-otolaryngologist who is highly regarded in his field. My next appointment is next month. I imagine that if I wanted to try Nortriptyline, he would prescribe it. However, I would never take such a medication. If you take that, it permanently puts a label in your medical records as someone suffering from depression.

I've had severe tinnitus for many years, but I am not depressed and wouldn't want that label in my medical records. Experimenting with a medication for tinnitus that is primarily prescribed for depression can change how any medical professional views you from then on.

The best therapy for my tinnitus is background noise. I feel my best when I'm outside in nature. I don't want complete silence, but I also avoid damaging loud noise.

 

[cjbhab]

I haven't been on here in a while. I still go annually to see a neuro-otolaryngologist who is highly regarded in his field. My next appointment is next month. I imagine that if I wanted to try Nortriptyline, he would prescribe it. However, I would never take such a medication. If you take that, it permanently puts a label in your medical records as someone suffering from depression.

I've had severe tinnitus for many years, but I am not depressed and wouldn't want that label in my medical records. Experimenting with a medication for tinnitus that is primarily prescribed for depression can change how any medical professional views you from then on.

The best therapy for my tinnitus is background noise. I feel my best when I'm outside in nature. I don't want complete silence, but I also avoid damaging loud noise.

I really don't care how they view me. My concern is whether Nortriptyline will make my tinnitus worse. Also, can't you simply explain the purpose of taking the drug?

 

[Daniel Lion]

I haven't been on here in a while. I still go annually to see a neuro-otolaryngologist who is highly regarded in his field. My next appointment is next month. I imagine that if I wanted to try Nortriptyline, he would prescribe it. However, I would never take such a medication. If you take that, it permanently puts a label in your medical records as someone suffering from depression.

I've had severe tinnitus for many years, but I am not depressed and wouldn't want that label in my medical records. Experimenting with a medication for tinnitus that is primarily prescribed for depression can change how any medical professional views you from then on.

The best therapy for my tinnitus is background noise. I feel my best when I'm outside in nature. I don't want complete silence, but I also avoid damaging loud noise.

The neuro-otolaryngologist is like the queen in chess — the best piece, outranking both the ENT and the audiologist. Has this impressive doctor made any recommendations for the future, perhaps in a few years, that don't involve drugs? In other words, does your doctor see anything promising on the horizon?

 

[Tex]

The neuro-otolaryngologist is like the queen in chess — the best piece, outranking both the ENT and the audiologist. Has this impressive doctor made any recommendations for the future, perhaps in a few years, that don't involve drugs? In other words, does your doctor see anything promising on the horizon?

The doctor still has no recommendations and says there is no cure or effective therapy yet. I've been seeing him for 16 years and trust him. Some people ask why I continue to go. The hearing exam is very advanced—each year, I receive a detailed graph showing all the ranges and any changes. Since my insurance covers it, I'll keep going.

I apologize if I sounded a bit too firm on the subject of depression medication. Depression seems to be one of Big Pharma's "golden goose" products. These medications are overprescribed, and for some, they've become an addiction problem.

 

[Daniel Lion]

The doctor still has no recommendations and says there is no cure or effective therapy yet. I've been seeing him for 16 years and trust him. Some people ask why I continue to go. The hearing exam is very advanced—each year, I receive a detailed graph showing all the ranges and any changes. Since my insurance covers it, I'll keep going.

I apologize if I sounded a bit too firm on the subject of depression medication. Depression seems to be one of Big Pharma's "golden goose" products. These medications are overprescribed, and for some, they've become an addiction problem.

No need to apologize. The U.S. pushes antidepressants like candy—it's crazy.

I would recommend continuing to see this doctor; you're lucky to have one. I don't have that option. I use Tinnitus Talk to gather information.

Perhaps next time you meet with him, you could ask about implants as a possible fix for tinnitus, or if he sees any promising mechanical or drug-based treatments.

Thanks for getting back to me, @Tex.

Stay well!

 

[ErikaS]

I believe they have completed a larger clinical trial, with the results expected to be published soon. Dr. Djalilian mentioned this on one of his slides during the Tinnitus Quest webinar a couple of weeks ago.

I spoke with Dr. Djalilian about this specific result, and in July, he informed me that he expected the results to be officially published within the next six months.

Thank you, @marqualler, for sharing the most recent study. I recall Dr. Hamid Djalilian mentioning during the Q&A that they had completed this study, submitted the results for peer review, and were waiting for feedback. I plan to hold off on starting any new medication until this larger, more current study is published.

 

[marqualler]

Thank you, @marqualler, for sharing the most recent study. I recall Dr. Hamid Djalilian mentioning during the Q&A that they had completed this study, submitted the results for peer review, and were waiting for feedback. I plan to hold off on starting any new medication until this larger, more current study is published.

That's exactly how I feel about starting any new medication. I'm not very confident about trying something until it's been published. Even then, I'd prefer to present the published results to a local ENT, who can review the information and decide if it would be appropriate for my situation.

The good news is that the medications being considered are already on the market, so there's no need to wait for FDA approval.

 

[2noist]

That's exactly how I feel about starting any new medication. I'm not very confident about trying something until it's been published. Even then, I'd prefer to present the published results to a local ENT, who can review the information and decide if it would be appropriate for my situation.

Your story regarding NeuroMed provided me with very valuable insights. Thank you for spending the time writing it! Please keep us updated on your progress.

I might end up trying this, but the price is a little steep for me at the moment.

 

[Nick47]

Do we know which anticonvulsant medications are recommended, if necessary, as adjunctive therapy?

I know Gabapentin and Lamotrigine are on the list.

 

[DebInAustralia]

Do we know which anticonvulsant medications are recommended, if necessary, as adjunctive therapy?

I know Gabapentin and Lamotrigine are on the list.

I'm pretty sure @ErikaS posted an algorithm that included adding Topamax if the patient is already on an antidepressant, such as Nortriptyline.

 

[Nick47]

→ Here is a more up-to-date article that digs more into the entire basis of the NeuroMed program.

I noticed this:

Frequently, patients report a transient amplification in their tinnitus following exposure to loud but nonharmful noises, like those found in restaurants, high-frequency sounds, or ambulance sirens. This temporary escalation in tinnitus perception is likely a result of a momentary increase in migraine-related brain sensitivity triggered by the loud or high-frequency auditory input. While complete avoidance of loud sounds is not always feasible for patients, this phenomenon provides additional support for the hypothesis that controlling the underlying migraine process could potentially lead to improvements in tinnitus.

 

[ErikaS]

I'm pretty sure @ErikaS posted an algorithm that included adding Topamax if the patient is already on an antidepressant, such as Nortriptyline.

When I spoke with John, the intake coordinator, he mentioned that they aren't necessarily using Nortriptyline for its antidepressant properties. According to him, Nortriptyline is also used as a pain reliever, particularly for migraines and other types of headaches. He encouraged me not to focus solely on its "antidepressant" label because they often use the medication in much smaller doses, typically not even reaching the therapeutic level needed for depression treatment.

Regarding the chart I posted: from what I understand, unless the latest study reveals something new, the current protocol starts with Nortriptyline. If there's no improvement, Topamax is added. If there's still no change, Verapamil, a calcium channel blocker primarily used as a vasodilator, is introduced. If none of these medications make a difference, the protocol then considers the additional medications listed in the last box of the chart.

 

[Nick47]

@ErikaS, I'm back in hell with you. It seems we made some progress with the hyperacusis, and the reactivity settled a bit. Mine never fully went away—it still flared up to things like the kettle boiling—but the tinnitus felt more stable, and the intense days were fewer. We got confident and tried to expose ourselves to normal, louder environments.

There are two studies showing that this protocol can help with loudness and pain hyperacusis, as well as some types of tinnitus. What triggers your reactivity?

Topiramate is also a GABA-promoting drug, but unlike benzodiazepines, it reduces glutamate, so it could be a good combination. Maybe after 6-12 months, you could consider reducing Lorazepam?

If an anticonvulsant is recommended, you might look into Lamotrigine, especially since you've already tried Keppra without any benefit. With Nortriptyline, I've only seen improvements or no change. For us, it might be worth focusing on tackling the hyperacusis element first.

I came across this information:

Anti-seizure drugs (e.g., gabapentin, topiramate, levetiracetam) may be effective for people with hyperacusis due to irritable neural pathways. These drugs may work on similar circuitry that is helpful for migraines. Generally speaking, seizure medications that work for migraine are also mood stabilizers, so they may also be helpful there.

(Source)

 

[ErikaS]

@ErikaS, I'm back in hell with you. It seems we made some progress with the hyperacusis, and the reactivity settled a bit. Mine never fully went away—it still flared up to things like the kettle boiling—but the tinnitus felt more stable, and the intense days were fewer. We got confident and tried to expose ourselves to normal, louder environments.

There are two studies showing that this protocol can help with loudness and pain hyperacusis, as well as some types of tinnitus. What triggers your reactivity?

Topiramate is also a GABA-promoting drug, but unlike benzodiazepines, it reduces glutamate, so it could be a good combination. Maybe after 6-12 months, you could consider reducing Lorazepam?

If an anticonvulsant is recommended, you might look into Lamotrigine, especially since you've already tried Keppra without any benefit. With Nortriptyline, I've only seen improvements or no change. For us, it might be worth focusing on tackling the hyperacusis element first.

I came across this information:

(Source)

I completely agree with addressing the sound sensitivity aspect of my tinnitus. Lately, everything I search for is primarily related to sound sensitivity, overactive cranial or nerve responses, and similar issues. My ultimate goal is to significantly reduce or completely eliminate the reactivity, so I can manage stable tinnitus. It's the reactivity that makes my tinnitus so unstable, fluctuating, and heightened in volume during spikes.

At the moment, I can react to almost anything. The main physical triggers are constant sounds like driving, fans, AC units, TV, running water—basically, these have always been my top offenders. Stress and panic definitely make things worse and cause spikes, too. The bizarre thing about my tinnitus is that, for example, when I'm at work in my school treating kids during speech sessions or in class, surrounded by talking and background noise, my tinnitus often goes so quiet that it becomes almost undetectable. But as soon as I return to a quieter space and stop talking, it comes back with a vengeance, reacting to the noise and conversation I was just exposed to. It feels so abnormal and makes no sense.

This situation puts me in a difficult position: sitting in silence drives me crazy because my tinnitus is spiked, and all the sounds are overwhelming. But quiet is what I need to recover from the spike. When I'm in a low-level noise environment, it feels like my ears adjust to take in that sound, pushing the tinnitus to the background—unless it's one of those constant noises I mentioned. This gives me a mental break from what I hear in silence, but then I end up paying for that exposure when I return to quiet, and my tinnitus remains spiked or even worsens! I'm honestly shocked that I don't have loudness hyperacusis or noxacusis at this point because this is just unbearable.

Did you get a chance to read what I shared on your profile status? I went into more detail about my experiences there. I also mentioned that I'm seeing a physiatrist next Thursday and am considering discussing nerve blocks, specifically occipital ones.

 

[Nick47]

One of the medicines in this combination, Topiramate, has been studied for tinnitus about 20 years ago. The study found significant effects, though it doesn't specify the magnitude of the effect: 82% of participants improved compared to 33% in the placebo group, and this was achieved using a low dose.

The medicine seems to have neuroprotective effects by blocking sodium channels, reducing Glutamate, and raising GABA.

https://www.researchposters.com/Posters/AAOHNSF/AAO2007/P098.pdf

Good afternoon @annV, I'm not sure if you can help with this one. It's a very basic pre-print type write-up with no metrics on the claimed treatment effects.

 

[annV]

Good afternoon @annV, I'm not sure if you can help with this one. It's a very basic pre-print type write-up with no metrics on the claimed treatment effects.

It seems to originate from Mexico and I couldn't find it published in any medical journal.

Probably a bullshit type of study. I couldn't find anything on PubMed either for the corresponding author.

 

[Nick47]

Probably a bullshit type of study. I couldn't find anything on PubMed either for the corresponding author.

Thanks anyway, @annV. I looked around and could not find anything.

Do you have any opinions on Dr. Hamid Djalilian's migraine protocol? It seems there may be conflicts of interest, as he appears to have patents on various aspects of the protocol.

 

[annV]

Do you have any opinions on Dr. Hamid Djalilian's migraine protocol? It seems there may be conflicts of interest, as he appears to have patents on various aspects of the protocol.

I was very inspired by his webinar, but I'm more interested in his electrical stimulation project than the migraine protocol. The success rates claimed are too high for my taste. I need to see more real-word results and unbiased studies. It's also good to remember that when you put in over $2k of your money into a treatment, the placebo effect is enhanced. There have been studies that show the more expensive a treatment is, the more placebo relief it brings.

 

[Nick47]

The success rates claimed are too high for my taste. I need to see more real-word results and unbiased studie

These are my thoughts as well. I'm not saying it's not effective, but I don't believe it's up at 85-90%. Honestly, I would be surprised if it were even 50%. However, even that would be a remarkable improvement. There's no placebo control and no information on how many discontinued due to lack of improvement or side effects. The motto of Tinnitus Quest is transparency, so perhaps we could have pinned him down with better questioning.

That said, if it makes tinnitus more stable and reduces hyperacusis at low doses, I would willingly take the treatment.

 

[John Andrews]

I saw Dr. Djalilian two months after the onset of my symptoms and was greatly disappointed. He diagnosed me with silent migraines and handed me a pamphlet for more information. However, when I read it later, none of the symptoms described applied to me.

Curious, I looked up his research and found that his focus was on migraines. Despite this, I was advised to reduce my caffeine intake (I had already been off caffeine for about seven weeks by then), take a few supplements listed in the pamphlet (which I was already using), and start a prescription for two heavy anticonvulsants. These medications were unproven and part of his current clinical trial at the time. I chose not to take them because, even now, there is no evidence that they reduce tinnitus.

While he and his team are undoubtedly knowledgeable about tinnitus and are working hard to find a solution, the fact remains: there is no scientific support for this treatment protocol as a cure for tinnitus today.

I had an initial consultation with Dr. Djalilian last week and had a similar experience. However, I had some concerns about his prescribing Ubiquinol, B2, and Magnesium Oxide. From my understanding, if there isn't a deficiency, then taking these supplements won't be beneficial. Additionally, there isn't strong evidence supporting their effectiveness, and they are not approved by the American Tinnitus Association or other hearing-related groups and associations.

 

[Nick47]

and they are not approved by the American Tinnitus Association or other hearing-related groups and associations.

I would not be relying on those organizations for information.

 

[John Andrews]

You make a good point about not relying on some organizations, but my main focus was on highlighting the issue of prescribing supplements for tinnitus without a confirmed deficiency. Have you read any studies on Magnesium for tinnitus? When you dig into the details, these studies often state that Magnesium "may" be effective only if there is a deficiency.

Even on his own website, Dr. Djalilian mentions that patients with tinnitus have been shown to have low levels of Magnesium. I have also found this mentioned in some studies, which would suggest that supplementation makes sense. But if you don't have a deficiency, are you just wasting your money on supplements? And what about the placebo effect?

Has anyone on Tinnitus Talk actually been tested for low levels of these supplements?

 

[IYIiKe]

You make a good point about not relying on some organizations, but my main focus was on highlighting the issue of prescribing supplements for tinnitus without a confirmed deficiency. Have you read any studies on Magnesium for tinnitus? When you dig into the details, these studies often state that Magnesium "may" be effective only if there is a deficiency.

Even on his own website, Dr. Djalilian mentions that patients with tinnitus have been shown to have low levels of Magnesium. I have also found this mentioned in some studies, which would suggest that supplementation makes sense. But if you don't have a deficiency, are you just wasting your money on supplements? And what about the placebo effect?

Has anyone on Tinnitus Talk actually been tested for low levels of these supplements?

What are you expecting to find from these questions? Even if some individuals were tested and found to be deficient in certain nutrients, would it truly matter since it would still be anecdotal evidence?

The reality is that this is a condition where even the brightest minds don't fully understand what's happening.

Magnesium is one of the safest supplements you can take. If you take too much, you'll know—it will send you running to the bathroom. Many people take Magnesium for sleep and anxiety, which are often issues associated with tinnitus, regardless of whether it leads to improvement.

 

[Nick47]

You make a good point about not relying on some organizations, but my main focus was on highlighting the issue of prescribing supplements for tinnitus without a confirmed deficiency. Have you read any studies on Magnesium for tinnitus? When you dig into the details, these studies often state that Magnesium "may" be effective only if there is a deficiency.

Even on his own website, Dr. Djalilian mentions that patients with tinnitus have been shown to have low levels of Magnesium. I have also found this mentioned in some studies, which would suggest that supplementation makes sense. But if you don't have a deficiency, are you just wasting your money on supplements? And what about the placebo effect?

Has anyone on Tinnitus Talk actually been tested for low levels of these supplements?

@John Andrews, I think the point is that this is a multimodal treatment. Evaluating each element individually misses the overall approach. Many diseases are treated with a multimodal strategy because, on their own, each element offers little to no benefit. For example, HIV is treated with a combination of four medications that are ineffective individually. Cancer treatments often involve chemotherapy, radiotherapy, surgery, and immunotherapy. Depression might require 1-3 medications plus CBT. You get the picture.

Focusing on strong evidence for each individual element misses the point—it's the cumulative and synergistic effects that truly matter.

As for the actual response rate of this treatment, we won't know until patients follow the protocol and we see whether they improve or not.

 

[Nick47]

Interesting.

Patients who presented many months after experiencing sudden sensorineural hearing loss (SSNHL) showed significant improvements in low to mid-frequency hearing thresholds after at least six weeks of treatment with migraine medications combined with intratympanic (IT) Dexamethasone.

→ Treatment of Long-term Sudden Sensorineural Hearing Loss as an Otologic Migraine Phenomenon

 

[Karl Tallman]

I live in Southern California, so I was able to see Dr. Djalilian in late August for just a $35 copay.

I have moderate hearing loss and variable tinnitus in my left ear due to a one-time gunshot exposure in 1986. Over the years, it has worsened, especially since I'm a musician. It now fluctuates between a mild to moderate hissing (around a 5) to a more intense tonal ring or whine (7-8). My tinnitus goes through a weekly cycle: it starts at a 7, gradually reduces to a hissing over the next few days, and I might get a couple of days of relief before waking up in the morning with it loud again, starting the cycle over.

My diet doesn't seem to affect my fluctuating tinnitus, and I haven't been able to identify any specific triggers that cause it to change, except for sleep.

Dr. Djalilian thought I might be a good candidate for his migraine protocol since I occasionally experience migraines (4 or 5 times a year), often accompanied by a visual aura that precedes the headache.

He put me on his migraine trigger avoidance diet starting September 1st. Since then, I have stopped drinking alcohol, coffee, and anything with caffeine. I also stopped eating peanut butter, nuts, yogurt, all cheese, yeast products (including sourdough and fresh bread), and all beans, including hummus dip. It's been three weeks, and my tinnitus pattern hasn't changed at all. Dr. Djalilian wants me to stay on this diet for two months, after which he plans to prescribe migraine medication if my tinnitus doesn't reduce to what he considers my baseline (the mild to moderate hissing).

I feel like I'm wasting my time since it's been three weeks with no difference in my fluctuating tinnitus. Has anyone else tried his migraine diet, and did it improve your tinnitus?

 

[Nick47]

I feel like I'm wasting my time since it's been three weeks with no difference in my fluctuating tinnitus. Has anyone else tried his migraine diet, and did it improve your tinnitus?

I'm interested in Dr. Djalilian's medications because I don't believe diet plays a major role in my condition.

 

[2noist]

Does the program cost include seeing Dr. Djalilian himself? If yes, how many times?

We need more people trying this.

 

[Kumashi]

Does the program cost include seeing Dr. Djalilian himself? If yes, how many times?

We need more people trying this.

The program includes 10 telehealth sessions where they monitor your progress and answer any questions you may have. However, it does not include any interactions with Dr. Djalilian.