NeuroMed Tinnitus Program — Founded by Dr. Hamid Djalilian

[HighleyTall]

I believe food can trigger tinnitus, but when it comes to alcohol, I've noticed that my tinnitus worsens depending on the type of wine. This makes me think that it might not be the alcohol itself causing the issue, but rather the preservatives used in the wine.

"It is hypothesized that in individuals with sulfite intolerance, elevated serum sulfite levels inhibit enzymes related to the synthesis or activation of neurotransmitters active in the nucleus accumbens, resulting in tinnitus."

In my experience, eating a lot of unsalted peanuts can also cause my tinnitus to worsen.

 

[Nick47]

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.

The main point is whether the pathway and the combined effect of the supplements or medications work. Evaluating each supplement or medication separately misses this point entirely. I'm not particularly enthusiastic about the published studies because of their small sample sizes and lack of placebo control.

The graphs presented during the webinar are from the most recent trial, which did include a placebo, but this study has not yet been published. However, the sample sizes are still too small for me to be fully convinced. Additionally, key questions remain: How many participants were recruited, and how many dropped out? Researchers sometimes have a bad habit of omitting this crucial information.

 

[Kumashi]

Is anyone else trying this program and have any further updates?

Thanks.

 

[Karl Tallman]

I saw Dr. Djalilian in person in late August, and he put me on his Migraine Trigger Avoidance Diet, which I started on September 1. I'm also taking most of the supplements he recommended.

My tinnitus follows a weekly pattern, fluctuating from a moderate to sometimes severe, very annoying tonal ring/whine (7), and then gradually lowering over the week to a mild to moderate hissing (5), which I can pretty easily ignore. I've been on the diet for a month now, but unfortunately, I haven't noticed any change in the pattern. I still experience a couple of bad days each week, which is very disappointing.

I'm going to continue with the full 60-day diet and then try some of the migraine medication he plans to prescribe to see if that makes any difference.

 

[MiaVIL]

Is anyone else trying this program and have any further updates?

Thanks.

I will be starting it soon and will report back on my results once the program is complete. If you have any questions, feel free to ask, as I've had many in-depth discussions with them.

 

[2noist]

I will be starting it soon and will report back on my results once the program is complete. If you have any questions, feel free to ask, as I've had many in-depth discussions with them.

Will you try the full program, with the migraine medications and all? I'd be interested to know what they prescribe you in your specific case.

 

[MiaVIL]

Will you try the full program, with the migraine medications and all? I'd be interested to know what they prescribe you in your specific case.

Yes, the whole thing. Sound therapy will come later when I am feeling better. I am starting with Nortriptyline.

 

[Kumashi]

I will be starting it soon and will report back on my results once the program is complete. If you have any questions, feel free to ask, as I've had many in-depth discussions with them.

Thank you.

 

[antonio77]

I find it very interesting, but I can't translate the doctor's intervention, so I don't know exactly what he says, I just have a guess.

 

[Furetto]

Hi all,

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

Have there been any updates or improvements?

 

[marqualler]

Have there been any updates or improvements?

Hey there! So I never started on any of the Nortriptyline/Topamax and I've over the past couple of weeks stopped on the CoQ10 and Riboflaven. I haven't experienced any really troubling tinnitus symptoms now since early-to-mid August. I am not sure if I can attribute that to the nutriceuticals regimen or natural improvement or "re"habituation, but I'll take it. I've started to get back into things like going to the gym without a lot of real discomfort and not super lasting effects on the reactivity side. All in all, tinnitus is impacting me less overall again, especially since the beginning of September.

I'll still watch for the published paper from Dr. Djalilian, but for now I'm doing pretty well, all things considered. Fingers crossed my first Timberwolves game in a while goes OK next week--I'm planning on attending with some heavier-duty earplugs and sticking around for a shorter period of time.

 

[Furetto]

Hey there! So I never started on any of the Nortriptyline/Topamax and I've over the past couple of weeks stopped on the CoQ10 and Riboflaven. I haven't experienced any really troubling tinnitus symptoms now since early-to-mid August. I am not sure if I can attribute that to the nutriceuticals regimen or natural improvement or "re"habituation, but I'll take it. I've started to get back into things like going to the gym without a lot of real discomfort and not super lasting effects on the reactivity side. All in all, tinnitus is impacting me less overall again, especially since the beginning of September.

I'll still watch for the published paper from Dr. Djalilian, but for now I'm doing pretty well, all things considered. Fingers crossed my first Timberwolves game in a while goes OK next week--I'm planning on attending with some heavier-duty earplugs and sticking around for a shorter period of time.

Thanks for the feedback, and I'm glad to hear you're improving! Besides the nutraceuticals, what else have you been doing? Have you made any changes to your diet or tried sound therapy? Also, have you taken a high dose of Melatonin, like 3 mg? Did you stop the nutraceuticals under their guidance, or was that your own choice?

 

[marqualler]

Thanks for the feedback, and I'm glad to hear you're improving! Besides the nutraceuticals, what else have you been doing? Have you made any changes to your diet or tried sound therapy? Also, have you taken a high dose of Melatonin, like 3 mg? Did you stop the nutraceuticals under their guidance, or was that your own choice?

I haven't been doing anything particularly new over the last couple of months. I made some dietary changes over the summer but have mostly discontinued those. I realized that any potential benefits from changes, like skipping my morning coffee, were far outweighed by the enjoyment I get from it, so that has helped me feel better overall.

I was taking around 6 mg of Melatonin at night through August, then reduced it to 3 mg, and now I'm not using it at all. I also used sound therapy during the day when my tinnitus was more bothersome, especially while trying to work. However, I hardly use it anymore; the only background noise I play is a very soft deep brown noise track when I fall asleep.

Thankfully, I feel like I'm finding my sweet spot of habituation again. It seems that the noise trauma from May is starting to subside. I expect it will take longer to fully recover this time, but I'm feeling more optimistic about my recovery now than I did two months ago.

 

[Furetto]

I haven't been doing anything particularly new over the last couple of months.

To sum it up, it seems you didn't follow much of the Neuromed program in the end. Your approach was mostly natural healing:

• No dietary changes
• No drugs
• A short course of supplements (2–3 months)
• Occasional sound therapy
• The only noteworthy item you mentioned was 6 mg of Melatonin for one month

Is this correct?

 

[marqualler]

To sum it up, it seems you didn't follow much of the Neuromed program in the end. Your approach was mostly natural healing:

• No dietary changes
• No drugs
• A short course of supplements (2–3 months)
• Occasional sound therapy
• The only noteworthy item you mentioned was 6 mg of Melatonin for one month

Is this correct?

In my earlier post in this thread, I summed up what I followed for the first couple of months in the protocol. I definitely did make dietary changes for the first couple of months, followed the recommended supplement protocol for about the recommended period before starting to feel better, and used sound therapy when it felt right. I wouldn't say I'm healed or back to where I was before my noise trauma, but I feel better, and my symptoms are less severe now, so I'm just focusing on the tinnitus less.

I hope that helps!

 

[ErikaS]

In my earlier post in this thread, I summed up what I followed for the first couple of months in the protocol. I definitely did make dietary changes for the first couple of months, followed the recommended supplement protocol for about the recommended period before starting to feel better, and used sound therapy when it felt right. I wouldn't say I'm healed or back to where I was before my noise trauma, but I feel better, and my symptoms are less severe now, so I'm just focusing on the tinnitus less.

I hope that helps!

Hey @marqualler, I'm so happy to hear that you're continuing to experience improvement and stability! That's my goal as well, especially once I stop working soon.

If you don't mind me asking, which specific Magnesium supplement are you taking? Was it a complex blend with multiple types of Magnesium, or just one kind? There are so many options to choose from! I've read that Magnesium L-Threonate (Magtein) is currently popular because it's believed to cross the blood-brain barrier most effectively.

 

[MindOverMatter]

If you don't mind me asking, which specific Magnesium supplement are you taking? Was it a complex blend with multiple types of Magnesium, or just one kind? There are so many options to choose from! I've read that Magnesium L-Threonate (Magtein) is currently popular because it's believed to cross the blood-brain barrier most effectively.

I just want to add a recommendation: try a mix of both Magnesium Glycinate and L-Threonate, taken before bed.

 

[ErikaS]

I just want to add a recommendation: try a mix of both Magnesium Glycinate and L-Threonate, taken before bed.

You know I very much value your recommendations thank you!

 

[marqualler]

Hey @marqualler, I'm so happy to hear that you're continuing to experience improvement and stability! That's my goal as well, especially once I stop working soon.

If you don't mind me asking, which specific Magnesium supplement are you taking? Was it a complex blend with multiple types of Magnesium, or just one kind? There are so many options to choose from! I've read that Magnesium L-Threonate (Magtein) is currently popular because it's believed to cross the blood-brain barrier most effectively.

Hey @ErikaS! The one I take daily is from FullScript, which is the store NeuroMed provides a discount to (image attached). I take two capsules daily. The key for me is two, which seems to be OK without upsetting my stomach. It is not labeled here on the picture, but each capsule is 240 mg.

P.S.

To be clear, I'm talking about the key with regard to taking enough that doesn't upset my stomach—I can't speak to whether this has been efficacious regarding my tinnitus or whether any improvements have been coincidental. I realize that the statement above could be misunderstood.

 

[Nick47]

A new section on reactive tinnitus:

Definitive Guide to Reactive Tinnitus - NeuroMed

Reactive tinnitus causes much suffering, yet it remains poorly understood. Find out more about reactive tinnitus from Dr. Djalilian, our tinnitus expert.

neuromedcare.com

 

[UKBloke]

A new section on reactive tinnitus:

Definitive Guide to Reactive Tinnitus - NeuroMed

Reactive tinnitus causes much suffering, yet it remains poorly understood. Find out more about reactive tinnitus from Dr. Djalilian, our tinnitus expert.

neuromedcare.com

Thanks for the link. What Hamid has provided there makes for interesting reading. I think he's on point with a lot of what he says, but I disagree with him on point 7:

Distinct from Hyperacusis: Although sound sensitivity may be present, the primary complaint is an increase in tinnitus intensity rather than an increase in loudness or sound sensitivity.

Symptomatically, there is absolutely a thing we can refer to as Reactive Tinnitus. I know this because I suffer from it. However, I get the impression Hamid is kind of pitching Reactive Tinnitus as a standalone condition. Irrespective of his current position on that, I should say that I believe it's (potentially one of many) symptomatic intersects between hyperacusis and tinnitus, i.e., the combination of two separate conditions.

When I attended my local NHS tinnitus clinic a couple of years ago and mentioned my own Reactive Tinnitus, the senior audiologist told me, "Yes, I'm aware that hyperacusis can aggravate tinnitus." Out of what overall for me was, unfortunately, quite a disappointing experience with NHS, her comment about Reactive Tinnitus was a key take-away point.

Regarding Hamid's protocol, are you aware of anyone who's actually followed it to the letter and completed it?

 

[Nick47]

believe it's (potentially one of many) symptomatic intersects between hyperacusis and tinnitus, i.e., the combination of two separate conditions.

Yes, I see definite overlaps.

Regarding Hamid's protocol, are you aware of anyone who's actually followed it to the letter and completed it?

No, because a few dozen people out of nearly 41,000 have stirred up paranoia around medicine, but I imagine many more people outside of this group feel the same way.

 

[Yellowblue44]

Hi! I would love to hear updates from anyone who has tried the full protocol, with or without medication. I have reactive tinnitus and hyperacusis.

 

[BuzzyBee]

A new section on reactive tinnitus:

Definitive Guide to Reactive Tinnitus - NeuroMed

Reactive tinnitus causes much suffering, yet it remains poorly understood. Find out more about reactive tinnitus from Dr. Djalilian, our tinnitus expert.

neuromedcare.com

Sounds perfect to me! I'm so glad Dr. Djalilian is recognizing it, and I hope he can spread the word among his colleagues.

 

[Yellowblue44]

@Nick47, thanks for sharing it. I logged on to do the same. Finally, reactive tinnitus is being recognized as a serious condition. WE ARE NOT MAKING THIS UP! WE NEED TO BE HEARD!

I saw Dr. Djalilian in person in late August, and he put me on his Migraine Trigger Avoidance Diet, which I started on September 1. I'm also taking most of the supplements he recommended.

My tinnitus follows a weekly pattern, fluctuating from a moderate to sometimes severe, very annoying tonal ring/whine (7), and then gradually lowering over the week to a mild to moderate hissing (5), which I can pretty easily ignore. I've been on the diet for a month now, but unfortunately, I haven't noticed any change in the pattern. I still experience a couple of bad days each week, which is very disappointing.

I'm going to continue with the full 60-day diet and then try some of the migraine medication he plans to prescribe to see if that makes any difference.

@Karl Tallman, did you continue with the diet? Did you see any improvements?

 

[Yellowblue44]

@MiaVIL, how are you getting on?

 

[Oklahomie]

I am now in week 4 of the Neuromed program, and I have a few thoughts to share.

• Currently, I am in a state where they cannot prescribe me any type of medication. For now, I'm focusing primarily on the nutraceuticals, diet, exercise, and CBT components of the program.
• I haven't seen any improvement over the past four weeks, but I believe it will take longer than a month to see results.
• The program reminds me of my time in drug rehab, where I kept a daily journal of my thoughts and feelings. Here, I'm also logging what I eat, when I eat it, and noting any symptom spikes after certain foods or drinks.

I know this isn't as in-depth as what others have shared here, but honestly, I'm amazed each time I log in to the forums. The depth and breadth of knowledge here are staggering!

I'll continue with the program for the next four weeks, keeping my expectations low. I've learned that I do best when I don't expect too much.

For now, I'm focusing on being a father, husband, son, and good worker, and doing my best to stay as happy as possible. We need to stick together and make our voices heard! In my opinion, there are too many knowledgeable people here for this to be something we can't manage or treat.

 

[MiaVIL]

@MiaVIL, how are you getting on?

I'm not doing well. They started me on Nortriptyline, but I haven't noticed any improvement. Now, they want to add Gabapentin. I'm unsure if I'll continue with this treatment, given how little progress I've made with the medication and the lack of evidence supporting this protocol's effectiveness.

 

[Yellowblue44]

I'm not doing well. They started me on Nortriptyline, but I haven't noticed any improvement. Now, they want to add Gabapentin. I'm unsure if I'll continue with this treatment, given how little progress I've made with the medication and the lack of evidence supporting this protocol's effectiveness.

I'm sorry you haven't seen any improvement; it can take some time. May I ask what your symptoms are? I'm tempted to try Topiramate, as it is an actual migraine medication, and the theory behind it makes sense to me. Do you know why they haven't suggested that one yet?

 

[MiaVIL]

I'm sorry you haven't seen any improvement; it can take some time. May I ask what your symptoms are? I'm tempted to try Topiramate, as it is an actual migraine medication, and the theory behind it makes sense to me. Do you know why they haven't suggested that one yet?

My symptoms include severe tinnitus with crackling sounds, electric shocks at the back of my head and in my ears, metal tapping, hissing, and Morse code-like noises. Occasionally, I have mucus that drains from my ears, but I don't have any other symptoms.

They've suggested topiramate, but I haven't heard good things about it. If the theory behind this treatment makes sense to you, it might be worth trying it based on your own experience rather than relying solely on others' feedback.