NeuroMed Tinnitus Program — Founded by Dr. Hamid Djalilian

[ErikaS]

Hello everyone,

This thread is for those who have completed, are currently participating in, or are considering the NeuroMed Tinnitus Program.

The NeuroMed Tinnitus Program is based on Dr. Hamid Djalilian's research, which involves using specific migraine medications along with a combination of studied supplements, Cognitive Behavioral Therapy (CBT), lifestyle changes, and dietary modifications. The program aims to stabilize certain types of tinnitus, which may present as:

• Constant but variable and fluctuating
• Intermittent
• Changes in baseline volume
• Somatic tinnitus
• Sound sensitivity (e.g., reactivity and/or hyperacusis)

Dr. Djalilian's research suggests that individuals suffering from subjective tinnitus and hearing loss are more likely to have ontologic migraines, a condition he describes as a brain sensitivity disorder characterized by increased brain sensitivity. These migraines can manifest in the various tinnitus characteristics mentioned above. Based on his research, Dr. Djalilian believes that more stable and manageable tinnitus can be achieved for many individuals through specific migraine medications, combined with the multi-faceted approach offered by the program.

To learn more about Dr. Djalilian's approach, findings, and program, you can watch Tinnitus Quest's Q&A video:

​

If you are currently in the program or have completed it, please share your experiences, thoughts, and insights below. By doing so, we can learn from each other and support one another in managing our tinnitus and improving our quality of life.

 

[Nick47]

Thanks @ErikaS.

This is now officially recognized as a treatment, so it deserves its place here.

Could this involve some citizen science? We could consider gathering patient feedback on the effectiveness of the treatment, but there are some caveats to keep in mind.

Patients providing feedback should meet the following criteria:

1. They have been following the protocol for at least one month.
   
   
2. They are taking at least one medication, one nutraceutical, and are also participating in either CBT (Cognitive Behavioral Therapy) or Sound Therapy, along with making at least one lifestyle change.

Otherwise, we risk getting responses from people who have only tried a few supplements or a single medication on its own, which could lead to claims of ineffectiveness. Of course, monotherapy alone isn't enough.

 

[Fields]

Thank you @ErikaS.

Thanks for your post in the other thread as well. First, I think I'll start with finding a local specialist who's willing to work with me. Fortunately, I have one in mind who's already interested in Dr. Djalilian's work.

After that, I'll schedule a discovery call with NeuroMed to see what my options are.

As for the cost, once I have an estimate from NeuroMed, I'll see if I can negotiate anything with my health insurance. If they won't cover anything, I might pay out of pocket, depending on the experiences in this thread.

 

[Bhaveen]

Thanks @ErikaS.

This is now officially recognized as a treatment, so it deserves its place here.

Could this involve some citizen science? We could consider gathering patient feedback on the effectiveness of the treatment, but there are some caveats to keep in mind.

Patients providing feedback should meet the following criteria:

1. They have been following the protocol for at least one month.
   
   
2. They are taking at least one medication, one nutraceutical, and are also participating in either CBT (Cognitive Behavioral Therapy) or Sound Therapy, along with making at least one lifestyle change.

Otherwise, we risk getting responses from people who have only tried a few supplements or a single medication on its own, which could lead to claims of ineffectiveness. Of course, monotherapy alone isn't enough.

I believe the perspectives of those who are not taking medication are important for the following reasons:

1. I was informed that around 20 percent of participants do not take the medication. Why should we dismiss their views?
   
   
2. If there are participants achieving results without medication, it provides reassurance to others that positive outcomes are possible without relying on medication. This is especially significant for individuals who cannot take these medications due to interactions with other medications they are currently on.
   
   
3. Conversely, if it becomes clear that medication is necessary to achieve the desired results, it helps people approach the situation with "open eyes," fully aware of what may be required.

Additionally, please remember that this is a 20-week program. As a reader, I would encourage anyone receiving feedback—especially if it's not entirely positive—to withhold final judgment until the full 20 weeks have passed.

 

[ErikaS]

I have a discovery call scheduled with John this Wednesday evening, during which I will ask more specific questions than those we've already discussed in our brief email exchanges. Once I feel confident about moving forward, I will reach out to my local ENT, who has thankfully been very compassionate and is willing to work with me on pursuing treatments, as long as they are safe and/or backed by science. He is the one who administered the intracanal lidocaine injections for me. I will report back after my call on Wednesday evening.

I am really trying to stay level-headed and logical with a neutral mindset, but this is the first time we've been presented with a treatment, backed by science, that specifically targets otologic migraine symptoms such as fluctuations, sound sensitivity, instability, and so on. Honestly, I had prepared myself long ago to never hear, "This could treat your reactivity; this treatment's goal is to eliminate your sound sensitivity." I simply hoped that whatever treatment emerged for tinnitus would also address my reactivity, or at least that my reactivity wouldn't be a condition that prevented the tinnitus treatment from working.

Here's to hoping this protocol brings stability to at least one of us, if not more.

 

[marqualler]

Hi all,

I'll go first since I started this protocol at the end of June 2024.

My Case

I entered this program after experiencing a worsening of my previously mild tinnitus. I first had moderate to severe tinnitus in October 2014 following an ear infection. Over time, the tinnitus gradually became milder, eventually reaching a point where I essentially forgot about it after a couple of years. By 2020, I honestly can't recall a single time that the tinnitus registered in my awareness.

The worsening occurred this past May 2024 after attending a concert without ear protection. Interestingly, my initially unilateral tinnitus, which was on my left side, worsened but remained confined to the left side. My right side remains unaffected for now.

Having gone through the entire cycle of habituation once before, I was (long story short) basically able to re-habituate to it. However, I'm still not entirely out of the woods and remain frustrated by a new, more reactive dimension to my tinnitus, which makes going to restaurants and noisy places more difficult.

After experiencing a few episodes where my tinnitus reached 9/10 or 10/10 in normally safe sound environments in May and early June, and rejoining this message board, I was interested to see Dr. Djalilian's research presented at the Tinnitus Research Initiative conference in Vancouver in June 2024.

The Program

I contacted them in June and found out that they were not yet registered for telehealth in Minnesota. However, I was traveling to Wisconsin in June and was able to set up my first telehealth appointment while there. Since then, I've been able to access NeuroMedCare whenever and wherever I need.

First off, the program, as advertised on their website, is not intended to be a "quick fix" or a "magic bullet." It was explained to me as a longer-term protocol. I was evaluated by their intake manager, who told me that, based on my symptoms, I would be a good candidate for the program. (One thing I wish I could have done at this point was to have had a more in-depth conversation with Dr. Djalilian himself. I don't think the intake manager, who is an MBA without medical credentials, is qualified to determine whether patients are truly good candidates for the program.)

Nevertheless, I was able to enroll by paying the full fee (around $2200), which set up my first telehealth intake session and provided access to the online portals.

The Protocol

The protocol involves several steps, but here are the key components:

• CBT: This component, offered through Dr. Djalilian's company, xTinnitus, is a self-paced online program with several modules that you can work through on your own.
  
  
• Sound Therapy: This is provided through another of Dr. Djalilian's companies, Beyond Tinnitus. The therapy is designed to closely match your tinnitus frequency. The app allows you to create your own sound therapy files and even layer in sounds like podcasts or music, so you can listen to other things while doing sound therapy.
  
  
• Lifestyle Changes: These focus on ensuring adequate sleep and exercise. Within the NeuroMedCare modules, Dr. Djalilian provides guidance on improving these areas.
  
  
• Diet Changes: This part of the program has been the hardest for me. It involves following the "Heal My Headache" diet, which eliminates foods containing caffeine, tyramine, glutamate, and histamines. The diet is designed as an elimination diet, where you remove all "unsafe" foods and gradually reintroduce them.
  
  
• Nutraceuticals: The daily protocol includes up to 800 mg of Magnesium, 400 mg of Riboflavin, 300 mg of CoQ10, and 500 IUs of Vitamin D. It also includes 3 mg of Melatonin at bedtime.
  
  
• Medication: The protocol suggests a gradual increase of Nortriptyline, from 10 mg/day up to 75 mg/day, followed by the introduction of Topamax. However, this section is optional, as the program notes that many have experienced improvements without the medication.

My Experience

First off, the team at NeuroMedCare is very nice and clearly cares deeply about their patients. The intake director was happy to answer all my questions, and my first telehealth appointment with the nurse practitioner was thorough and professional. Additionally, whenever I've had questions, I've been able to email them, often receiving detailed responses directly from Dr. Djalilian himself. Having seen many ENTs in my life and visited a "specialty" tinnitus clinic, I can say this is the most responsive and caring team I've encountered, and I appreciate that.

The program itself has been somewhat mixed in terms of effectiveness. The CBT component has actually been quite helpful. Whenever I've felt really depressed (often from reading posts on this website), going to the CBT site and working through a few modules has helped lift my spirits. The sound therapy has been okay, though I've found myself using the Tinnitus Play app more frequently. The program emphasizes that you can use whatever sound therapy works best for you, or none at all if you prefer.

The lifestyle changes have been beneficial, particularly regarding sleep. Having gone through tinnitus before, I knew I had to ensure my sleep was in order. I've been fortunate to get mostly good sleep, and I've recently started weaning off melatonin and "loud" sound therapy at bedtime. I realize this may not be the norm, but it's been my experience.

The diet has been the hardest part of the program. The biggest challenge has been gradually eliminating caffeine entirely, which I haven't been able to do. However, I did manage to reduce my coffee intake from 3-4 cups per day to less than one cup per day for about two months. I also avoided many of the specific food groups and stuck to a basic diet. Whether due to the diet or the initial onset of fight or flight, I lost about 15 pounds (ironically leading to many compliments on my appearance, though internally, I'd happily gain the weight back to get rid of the tinnitus!). Nevertheless, this is the part of the program I've followed the least strictly.

I've been consistent with the nutraceuticals component, though I found that 800 mg of Magnesium upset my stomach, so the team advised me to reduce the dose slightly. There was also some confusion regarding how much to take of certain supplements. Initially, they suggested 10,000 IUs of Vitamin D, but later told me 5,000 IUs was also okay. This left me feeling like the team wasn't entirely sure what the exact protocol should be.

I did fill my prescription for Nortriptyline and started taking it, but after two days, my tinnitus became so loud that it felt like my head was going to explode, so I stopped. The tinnitus returned to "normal," and I haven't resumed the medication yet, though I'm considering trying it again this fall.

On the recommendation of @gameover, I also started seeing a bodywork specialist for TMJ, and I think my first session slightly helped with the reactivity.

One other note: I requested a refund for the remaining telehealth sessions. Prepaying for the program covers eight sessions, but I didn't feel I needed the remaining ones. They agreed to refund me and mentioned that I could pay per session if I wanted more in the future. Keep this in mind if you do the protocol—they might be open to negotiating the cost. (This also gave me a bit of an uneasy feeling about their confidence in the program, which is understandable considering they are a startup medical company.)

My Results

Overall, since starting the program in late June 2024, I've noticed about a 10-20% improvement. In late June and early July, my tinnitus was still quite reactive and bothersome in situations like driving or going out. My 4th of July was particularly miserable, which was distressing since I have a wife and two kids at home, making me feel limited in what I could do. I then had a trip to Seattle at the end of July, which wasn't great, although it didn't go as badly as I feared.

Whether due to natural improvement, the effects of the nutraceuticals, or a combination of both, I have noticed in the last two weeks that my tinnitus seems less reactive, and my sound sensitivity has improved. I recently took my kids to a friend's cabin, which was extremely noisy. The drive there felt reactive and miserable, but the drive back wasn't as bad. I was able to listen to an entire album in the car without too much trouble, which was a relief. Today, I took my kids to the MN State Fair, where the noise level was around 85-90 dB just walking around. I tolerated it well (with earplugs), and I didn't experience a spike afterward, which is encouraging.

Objectively, my tinnitus restarted loudly in late May/mid-June, became super loud and reactive for most of July, and (maybe? knock on wood!) has gradually started getting less reactive and a bit quieter since then. The biggest difference I've noticed is that in a quiet room, it's not as loud, and for most of the day, I'm not as bothered by it.

That said, I'm not out of the woods yet, and I'd describe my overall experience with this protocol as mixed. I'm not cured, but I'm definitely the most "back to normal" I've been since this worsening occurred. Whether I can ever return to where I was before remains to be seen, but I'm going to stick with the program and continue exploring other treatments. Hopefully, I can continue to experience the natural, gradual improvement I experienced the first time.

Let me know if you have any questions!

P.S.

One other note I forgot to mention regarding bodywork: I noticed that the NeuroMedCare website and program have been updated to recommend it as part of the protocol. I decided to consider incorporating it into my routine. The reasoning is that if there is a somatic component to one's tinnitus (as there is in my case, since I can modulate it by holding my neck in a certain position), bodywork might be beneficial.

Interestingly, the NeuroMedCare website also includes a statement about the Susan Shore device, expressing skepticism about its effectiveness when used alone.

Dr. Djalilian personally emailed me his thoughts on the Shore device, which I shared on a different thread on Tinnitus Talk.

 

[ErikaS]

Hi all,

I'll go first since I started this protocol at the end of June 2024.

My Case

I entered this program after experiencing a worsening of my previously mild tinnitus. I first had moderate to severe tinnitus in October 2014 following an ear infection. Over time, the tinnitus gradually became milder, eventually reaching a point where I essentially forgot about it after a couple of years. By 2020, I honestly can't recall a single time that the tinnitus registered in my awareness.

The worsening occurred this past May 2024 after attending a concert without ear protection. Interestingly, my initially unilateral tinnitus, which was on my left side, worsened but remained confined to the left side. My right side remains unaffected for now.

Having gone through the entire cycle of habituation once before, I was (long story short) basically able to re-habituate to it. However, I'm still not entirely out of the woods and remain frustrated by a new, more reactive dimension to my tinnitus, which makes going to restaurants and noisy places more difficult.

After experiencing a few episodes where my tinnitus reached 9/10 or 10/10 in normally safe sound environments in May and early June, and rejoining this message board, I was interested to see Dr. Djalilian's research presented at the Tinnitus Research Initiative conference in Vancouver in June 2024.

The Program

I contacted them in June and found out that they were not yet registered for telehealth in Minnesota. However, I was traveling to Wisconsin in June and was able to set up my first telehealth appointment while there. Since then, I've been able to access NeuroMedCare whenever and wherever I need.

First off, the program, as advertised on their website, is not intended to be a "quick fix" or a "magic bullet." It was explained to me as a longer-term protocol. I was evaluated by their intake manager, who told me that, based on my symptoms, I would be a good candidate for the program. (One thing I wish I could have done at this point was to have had a more in-depth conversation with Dr. Djalilian himself. I don't think the intake manager, who is an MBA without medical credentials, is qualified to determine whether patients are truly good candidates for the program.)

Nevertheless, I was able to enroll by paying the full fee (around $2200), which set up my first telehealth intake session and provided access to the online portals.

The Protocol

The protocol involves several steps, but here are the key components:

• CBT: This component, offered through Dr. Djalilian's company, xTinnitus, is a self-paced online program with several modules that you can work through on your own.
  
  
• Sound Therapy: This is provided through another of Dr. Djalilian's companies, Beyond Tinnitus. The therapy is designed to closely match your tinnitus frequency. The app allows you to create your own sound therapy files and even layer in sounds like podcasts or music, so you can listen to other things while doing sound therapy.
  
  
• Lifestyle Changes: These focus on ensuring adequate sleep and exercise. Within the NeuroMedCare modules, Dr. Djalilian provides guidance on improving these areas.
  
  
• Diet Changes: This part of the program has been the hardest for me. It involves following the "Heal My Headache" diet, which eliminates foods containing caffeine, tyramine, glutamate, and histamines. The diet is designed as an elimination diet, where you remove all "unsafe" foods and gradually reintroduce them.
  
  
• Nutraceuticals: The daily protocol includes up to 800 mg of Magnesium, 400 mg of Riboflavin, 300 mg of CoQ10, and 500 IUs of Vitamin D. It also includes 3 mg of Melatonin at bedtime.
  
  
• Medication: The protocol suggests a gradual increase of Nortriptyline, from 10 mg/day up to 75 mg/day, followed by the introduction of Topamax. However, this section is optional, as the program notes that many have experienced improvements without the medication.

My Experience

First off, the team at NeuroMedCare is very nice and clearly cares deeply about their patients. The intake director was happy to answer all my questions, and my first telehealth appointment with the nurse practitioner was thorough and professional. Additionally, whenever I've had questions, I've been able to email them, often receiving detailed responses directly from Dr. Djalilian himself. Having seen many ENTs in my life and visited a "specialty" tinnitus clinic, I can say this is the most responsive and caring team I've encountered, and I appreciate that.

The program itself has been somewhat mixed in terms of effectiveness. The CBT component has actually been quite helpful. Whenever I've felt really depressed (often from reading posts on this website), going to the CBT site and working through a few modules has helped lift my spirits. The sound therapy has been okay, though I've found myself using the Tinnitus Play app more frequently. The program emphasizes that you can use whatever sound therapy works best for you, or none at all if you prefer.

The lifestyle changes have been beneficial, particularly regarding sleep. Having gone through tinnitus before, I knew I had to ensure my sleep was in order. I've been fortunate to get mostly good sleep, and I've recently started weaning off melatonin and "loud" sound therapy at bedtime. I realize this may not be the norm, but it's been my experience.

The diet has been the hardest part of the program. The biggest challenge has been gradually eliminating caffeine entirely, which I haven't been able to do. However, I did manage to reduce my coffee intake from 3-4 cups per day to less than one cup per day for about two months. I also avoided many of the specific food groups and stuck to a basic diet. Whether due to the diet or the initial onset of fight or flight, I lost about 15 pounds (ironically leading to many compliments on my appearance, though internally, I'd happily gain the weight back to get rid of the tinnitus!). Nevertheless, this is the part of the program I've followed the least strictly.

I've been consistent with the nutraceuticals component, though I found that 800 mg of Magnesium upset my stomach, so the team advised me to reduce the dose slightly. There was also some confusion regarding how much to take of certain supplements. Initially, they suggested 10,000 IUs of Vitamin D, but later told me 5,000 IUs was also okay. This left me feeling like the team wasn't entirely sure what the exact protocol should be.

I did fill my prescription for Nortriptyline and started taking it, but after two days, my tinnitus became so loud that it felt like my head was going to explode, so I stopped. The tinnitus returned to "normal," and I haven't resumed the medication yet, though I'm considering trying it again this fall.

On the recommendation of @gameover, I also started seeing a bodywork specialist for TMJ, and I think my first session slightly helped with the reactivity.

One other note: I requested a refund for the remaining telehealth sessions. Prepaying for the program covers eight sessions, but I didn't feel I needed the remaining ones. They agreed to refund me and mentioned that I could pay per session if I wanted more in the future. Keep this in mind if you do the protocol—they might be open to negotiating the cost. (This also gave me a bit of an uneasy feeling about their confidence in the program, which is understandable considering they are a startup medical company.)

My Results

Overall, since starting the program in late June 2024, I've noticed about a 10-20% improvement. In late June and early July, my tinnitus was still quite reactive and bothersome in situations like driving or going out. My 4th of July was particularly miserable, which was distressing since I have a wife and two kids at home, making me feel limited in what I could do. I then had a trip to Seattle at the end of July, which wasn't great, although it didn't go as badly as I feared.

Whether due to natural improvement, the effects of the nutraceuticals, or a combination of both, I have noticed in the last two weeks that my tinnitus seems less reactive, and my sound sensitivity has improved. I recently took my kids to a friend's cabin, which was extremely noisy. The drive there felt reactive and miserable, but the drive back wasn't as bad. I was able to listen to an entire album in the car without too much trouble, which was a relief. Today, I took my kids to the MN State Fair, where the noise level was around 85-90 dB just walking around. I tolerated it well (with earplugs), and I didn't experience a spike afterward, which is encouraging.

Objectively, my tinnitus restarted loudly in late May/mid-June, became super loud and reactive for most of July, and (maybe? knock on wood!) has gradually started getting less reactive and a bit quieter since then. The biggest difference I've noticed is that in a quiet room, it's not as loud, and for most of the day, I'm not as bothered by it.

That said, I'm not out of the woods yet, and I'd describe my overall experience with this protocol as mixed. I'm not cured, but I'm definitely the most "back to normal" I've been since this worsening occurred. Whether I can ever return to where I was before remains to be seen, but I'm going to stick with the program and continue exploring other treatments. Hopefully, I can continue to experience the natural, gradual improvement I experienced the first time.

Let me know if you have any questions!

P.S.

One other note I forgot to mention regarding bodywork: I noticed that the NeuroMedCare website and program have been updated to recommend it as part of the protocol. I decided to consider incorporating it into my routine. The reasoning is that if there is a somatic component to one's tinnitus (as there is in my case, since I can modulate it by holding my neck in a certain position), bodywork might be beneficial.

Interestingly, the NeuroMedCare website also includes a statement about the Susan Shore device, expressing skepticism about its effectiveness when used alone.

Dr. Djalilian personally emailed me his thoughts on the Shore device, which I shared on a different thread on Tinnitus Talk.

Thank you so much for sharing all of that in such detail. It is truly appreciated.

I have to be honest—when the intake coordinator sent me the article with the medication algorithm (attached below), my heart sank a little when I saw "Nortriptyline" as the first recommended medication. I thought, "Wait, we know this drug. It's not specifically for migraines, and it has been known in the community for quite some time, along with other TCAs." Then the algorithm states that if someone is already on an antidepressant, you would go straight to Topamax. I thought, "Oh gosh, Topamax is known for its harsh side effects." There's another medication listed to add to Topamax if the desired results aren't achieved, called Verapamil, which is a blood pressure medication and calcium channel blocker.

Unless I'm missing something or misunderstood the initial conversation, it doesn't seem like a select few specific migraine medications are being used to address these ontologic migraines. Instead, it appears that Topamax is primarily used. Is that your understanding too after participating in the program?

I'm relieved to hear that your tinnitus returned to its "normal" state after stopping Nortriptyline. It's downright frightening and earth-shaking when a medication exacerbates tinnitus so severely, leaving you to wait and hope it will return to what it was before.

One last question for you: It seems like you're a busy dad and husband, and I assume you work. When this most recent spike or setback occurred, and you realized it wasn't going away quickly, did you alter your life as much as possible to let your ears and system rest—like staying home a lot, avoiding the kids, not going out anywhere, limiting your social life, etc.? Or did you still have to carry on with activities, work, travel, and so on? I ask because I'm currently in a bad setback with increased reactivity, sensitivity, louder tinnitus, and distortions, but I still have to go to work every day. I hope it's possible to rebound from a setback like ours and return to a better baseline, even when you have to physically go to work and can't work from the quiet of your home.

 

[Bhaveen]

I'll go first since I started this protocol at the end of June 2024.

This was really detailed—thank you! I'm sorry to hear that Nortriptyline didn't help. The fear of making it worse is what's stopping me from trying it.

Regarding Magnesium, have you tried a different form that might be easier on your stomach? I also had issues with Magnesium, but then I tried Magnesium glycinate from the Pure Encapsulations brand, and it didn't upset my stomach. Alternatively, you could try taking a bath with Magnesium salts, which bypasses the stomach completely.

I'm following the protocol, but I won't post updates until I manage to stop smoking. They've told me it's a big no-no and will hamper any progress, so I don't feel like I'm doing it properly yet.

 

[MindOverMatter]

did you alter your life as much as possible to let your ears and system rest—like staying home a lot, avoiding the kids, not going out anywhere, limiting your social life, etc.? Or did you still have to carry on with activities, work, travel, and so on? I ask because I'm currently in a bad setback with increased reactivity, sensitivity, louder tinnitus, and distortions, but I still have to go to work every day. I hope it's possible to rebound from a setback like ours and return to a better baseline, even when you have to physically go to work and can't work from the quiet of your home.

I know this was intended for @marqualler, and he might respond to you later on. I just wanted to add my thoughts.

Yes to both, @ErikaS.

I continued with life as best I could, balancing work (even starting a business during this escalation) and family, though in altered ways. It's all about finding that balance. At one point, I stressed too much because of my business, which didn't make things any easier. It kept me busy, but there were times when my ears and head were all over the place.

Eventually, I found a work-life balance that suited me. Minimizing stress is key for me. The more I stress, worry, and focus on all the "what ifs," the worse I get. It's a reinforcing, negative spiral.

 

[marqualler]

One last question for you: It seems like you're a busy dad and husband, and I assume you work. When this most recent spike or setback occurred, and you realized it wasn't going away quickly, did you alter your life as much as possible to let your ears and system rest—like staying home a lot, avoiding the kids, not going out anywhere, limiting your social life, etc.? Or did you still have to carry on with activities, work, travel, and so on? I ask because I'm currently in a bad setback with increased reactivity, sensitivity, louder tinnitus, and distortions, but I still have to go to work every day. I hope it's possible to rebound from a setback like ours and return to a better baseline, even when you have to physically go to work and can't work from the quiet of your home.

I'm fortunate to have started my own accounting firm a few years ago, which allows me to work mostly from home or in a quiet coworking space. This has helped me avoid overly noisy situations. However, this also presents a challenge: before the onset of my current situation, I led an extremely busy life, with activities filling almost every day. Cutting back on this busy schedule has been really hard on my mental health.

A significant part of my job involves attending networking events and meeting potential new clients, activities that I've had to dramatically reduce. My kids go back to school today, which means I'll have more time to myself and more control over my environment. However, it also brings more school-related events, which could introduce more noise and chaos into my life.

My current goal for getting back to normal is to resume my 6 a.m. gym class, which was a huge mood booster and a crucial part of my daily routine since 2021. I'm hoping that by making incremental improvements over time, following the protocol, and pushing myself mentally, I can return to a new normal that feels good.

And @ErikaS, I'm so sorry you're dealing with such awful symptoms. I've read many of your posts and am inspired by the strong mental attitude you've maintained while facing setbacks and challenges. Thank you for sharing your story here. Are you back to work as well?

 

[Fields]

View attachment 57219

I've already made a lot of lifestyle changes over the past years: exercise, diet, sleep, and so on. And prior to tinnitus, I already lived quite healthily.

Proper sleep has been difficult since I worsened, however.

I'm wondering if, in consultation with a specialist, it would be safe to try the above rehabilitation algorithm on my own. Ultimately, I would only be adding Topiramate, Verapamil, and Vitamin B2 to my daily intake of supplements.

Are all the dosages mentioned in the flowchart supposed to be taken twice daily?

 

[RunningMan]

• Nutraceuticals: The daily protocol includes up to 800 mg of Magnesium, 400 mg of Riboflavin, 300 mg of CoQ10, and 500 IUs of Vitamin D. It also includes 3 mg of Melatonin at bedtime.

Is this correct regarding the Vitamin D? You mentioned 10,000 IU later in your post, which is 20X this dose.

 

[marqualler]

Is this correct regarding the Vitamin D? You mentioned 10,000 IU later in your post, which is 20X this dose.

Sorry -- I meant 5,000 IUs, which is lower than the initially recommended 10,000 IUs.

Their recommendation was 10,000 IUs, but when I asked them if that was a safe dose, they said I could try 5,000 IUs.

 

[AverageJoe12]

Is this correct regarding the Vitamin D? You mentioned 10,000 IU later in your post, which is 20X this dose.

@marqualler meant 5,000 IU. Dr. Djalilian's protocol at one point called for 10,000 IU Vitamin D, but the recommendation has since been revised to 5,000 IU per my Neuromed clinician.

 

[marqualler]

Are all the dosages mentioned in the flowchart supposed to be taken twice daily?

he nutraceuticals are intended to be taken twice daily, while the medication is designed to be gradually increased. However, I recommend checking with the protocol team and/or your doctor to determine what works best for you. I found that taking 400 mg of Riboflavin in the morning is more convenient and well-tolerated for me, so I take everything in the morning.

 

[MiaVIL]

I am very skeptical about the NeuroMed program, even though I initially wanted to try it. The drugs being offered, such as Topamax and Nortriptyline, seem quite harsh. I've noticed that some people have already tried them, but the reported side effects are concerning. What worries me most is that some claim these medications had no effect on their tinnitus or even made it worse.

I'm struggling to understand how Dr. Djalilian achieved such positive results with these medications. I haven't found any testimonials supporting this protocol, which makes me even more hesitant.

Does anyone else have any thoughts or experiences with this?

 

[Bhaveen]

I am very skeptical about the NeuroMed program, even though I initially wanted to try it. The drugs being offered, such as Topamax and Nortriptyline, seem quite harsh. I've noticed that some people have already tried them, but the reported side effects are concerning. What worries me most is that some claim these medications had no effect on their tinnitus or even made it worse.

I'm struggling to understand how Dr. Djalilian achieved such positive results with these medications. I haven't found any testimonials supporting this protocol, which makes me even more hesitant.

Does anyone else have any thoughts or experiences with this?

Medication worried me as well. Anecdotally, I've seen that Nortriptyline has either helped or made the condition worse for others.

I believe Dr. Djalilian is currently running a trial on these medications, so it might be best to wait and see what the outcome is.

 

[IYIiKe]

I've mentioned this in other threads, but a few of the drugs used in the protocol are prescribed off-label for anxiety, which could explain some of the improvements. I think it's still too early to draw conclusions, but in studies on auditory migraines, you'd expect to see some lesions or gray/white matter changes, similar to typical migraines, for comparison with tinnitus sufferers.

I have tinnitus, and my brain looks perfectly normal—no evidence of migraines or anything similar.

 

[Nick47]

I'm struggling to understand how Dr. Djalilian achieved such positive results with these medications. I haven't found any testimonials supporting this protocol, which makes me even more hesitant.

The people who found it effective are living their lives. Bad news sells.

 

[Furetto]

• It also includes 3 mg of Melatonin at bedtime.

Isn't 3 mg of Melatonin A LOT?

 

[MiaVIL]

The people who found it effective are living their lives. Bad news sells.

Hi, are you trying this protocol? Do you think it's worth taking the medications? They claim they can reduce tinnitus to a manageable level. I've had several emails and phone calls with John, the intake coordinator.

 

[Cmspgran]

Isn't 3 mg of Melatonin A LOT?

Yes, it really is a huge amount compared to what the body naturally produces. I've researched this, and certain experts in the field of sleep suggest that you only need a crumb-sized amount, even from a 1 mg pill.

From my own experience, I used to think that more is always better (silly me). However, when I tried 3 mg, I experienced paradoxical effects, which are known to occur when taking too much. It woke me up shivering in the night because it lowered my body temperature too much.

 

[Tim Dziwisch]

I would like to try the NeuroMed Tinnitus Protocol without the medications. Could you provide the exact dosages for the following supplements?

• Magnesium
• Vitamin D
• Melatonin
• Vitamin B2
• Are there any other supplements?

I took cortisone for two weeks, and I felt better only when I reduced it. However, the symptoms became very loud again after that. Dr. Djadilian mentioned that cortisone treats migraines, which is where the issue may stem from.

I'm from Germany, and I have access to CBT here. I just want to try the protocol, but they are still charging $500 US dollars for it, which is far too expensive for me as a student. The protocol will be published soon as part of a study, anyway.

Perhaps someone can post the full protocol here? Parts of it are already available.

 

[marqualler]

I would like to try the NeuroMed Tinnitus Protocol without the medications. Could you provide the exact dosages for the following supplements?

• Magnesium
• Vitamin D
• Melatonin
• Vitamin B2
• Are there any other supplements?

I took cortisone for two weeks, and I felt better only when I reduced it. However, the symptoms became very loud again after that. Dr. Djadilian mentioned that cortisone treats migraines, which is where the issue may stem from.

I'm from Germany, and I have access to CBT here. I just want to try the protocol, but they are still charging $500 US dollars for it, which is far too expensive for me as a student. The protocol will be published soon as part of a study, anyway.

Perhaps someone can post the full protocol here? Parts of it are already available.

Hi Tim,

I walked through the general protocol I was directed to follow in my post above. Additionally, @ErikaS shared the flowchart from one of the PubMed articles co-authored by Dr. Djalilian.

Good luck!

 

[DebInAustralia]

Is the NeuroMed Tinnitus Program available to international patients?

 

[MiaVIL]

Is the NeuroMed Tinnitus Program available to international patients?

I'm in Canada, and they said they would accept me.

 

[Nick47]

I just saw this:

It is likely that, of the various types of hyperacusis including loudness, annoyance, fear, and pain, migraine prophylactic treatment will best target loudness and pain hyperacusis. Loudness and pain hyperacusis have the closest relation with alterations in the threshold of hearing. By effectively lowering the threshold for firing of sensory neurons, migraine can increase the perceived noise level of specific sounds.

→ Efficacy of Multi-Modal Migraine Prophylaxis Therapy on Hyperacusis Patients

 

[withintention]

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.

It seems like it would have been useful to at least modify the regimen for different subsets of participants. For example, Group A could follow the regimen without dietary restrictions, Group B could skip the migraine medication, and Group C could do everything.

Also, if the study includes a large dose of melatonin, it's worth noting that my tinnitus is worse when I sleep poorly and better when I sleep well. How much of the improvement could simply be due to better sleep from taking a high dose of melatonin?

Wasn't Dr. Djalilian the researcher who received a $1 million grant from a tinnitus sufferer? I was really excited when I heard about that, but this approach seems a bit haphazard to me.

 

[AfroSnowman]

I tried to schedule a free consult but they cancelled me because I am not in one of the states they serve.

 

[MaxRabbit]

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.