NeuroMed Tinnitus Program — Founded by Dr. Hamid Djalilian

[BuzzyBee]

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.

I'm waiting to hear if anyone has had any positive results from Topiramate, but after searching the entire internet, all I find are reports of it making tinnitus much worse.

There's also a new migraine rescue drug called Ubrelvy. I wonder if Ubrelvy, known for its fast-acting relief, could help reduce a tinnitus spike. I haven't seen it listed in any NeuroMed protocols. On a migraine forum, someone did mention it seemed to lower their tinnitus, but I've only found that single report.

 

[Nick47]

I'm waiting to hear if anyone has had any positive results from Topiramate, but after searching the entire internet, all I find are reports of it making tinnitus much worse

Hi @BuzzyBee,

When I watched Dr. Hamid Djalilian's webinar, he shared some preliminary graphs and data from his latest study, which is yet to be published.

I noticed that the combination of Paroxetine and Verapamil had a responder rate of around 72%, compared to 52% for Nortriptyline and Topiramate. There was also a third control group included in the study.

There is literature indicating that L-type calcium channels play a role in many cases of tinnitus, and Verapamil targets these channels. Given concerns about the side effects of Topiramate, Verapamil could be a possible alternative. However, it is contraindicated for patients with a resting heart rate below 60, as it can lower the heart rate slightly. This makes it unsuitable for athletes or individuals with naturally low heart rates.

The treatment protocol Dr. Djalilian recommends follows a "multimodal" approach rather than relying on single supplements or medications. As we've learned from 50 years of research, single treatments often have limited effects due to the involvement of numerous ion channels and neurotransmitters.

 

[BuzzyBee]

I personally would avoid the combination of Paroxetine and Verapamil because of side effects I know I couldn't handle, but it's interesting that they are targeting specific calcium channels.

A multimodal approach is essential! I'm glad they are including CBT, sound therapy, and various supplements to support people who are new to tinnitus or who, unlike many of us, haven't already tried or become somewhat familiar with these methods.

 

[MasterFA]

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

Hi @MiaVIL, I hope you are doing better. Could you share the dose you started with (in mg) for Nortriptyline and let me know how it's going so far?

Thanks so much!

 

[kyscrivens]

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.

How long do your spikes last when they're caused by reactivity?

 

[Angophora]

I came across another otologist who considers that tinnitus that fluctuates in loudness and/or tone is likely to be an atypical migraine. In this lecture from his YouTube channel he talks in more detail about this and the treatment options from about 28 minutes in.



If you're worried about clicking on the link, you can also search YouTube for Migraine and Tinnitus.

His treatment approach has a lot of similarities to the treatment protocol suggested by Dr. Djalilian and has explanations of the mechanisms he believes are involved.

 

[Yellowblue44]

@marqualler, when you started his protocol, what symptoms of your tinnitus and hyperacusis led the doctor to determine that they were the same as a silent migraine?

Dr. Hamid Djalilian doesn't take on UK patients, so I will be following his protocol through my doctors here. Any information you provide would be very useful. I'm really struggling with both severe hyperacusis and tinnitus and need some relief.

Many thanks.

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.

@MaxRabbit, can you clarify which symptoms didn't apply to you that allowed you to follow the protocol? Thanks.

 

[sspencermo]

Maybe I missed it earlier in this thread, but here's a link to Dr. Djalilian's paper on migraine treatments for tinnitus. It shows "significant" improvements for both treatment protocols, but they don't look (to me) to be a whole lot better than the placebo. :-(

 

[Yellowblue44]

I have been taking a very low dose of Quetiapine, 7 mg (a quarter of a 25 mg pill), for sleep for a couple of years. My doctor had previously prescribed Mirtazapine, but it only kept me awake.

Recently, I managed to wean off Quetiapine, but after experiencing noise trauma, my hyperacusis and tinnitus became severe. I went back on it to help me sleep.

Two nights ago, I started taking Nortriptyline 10 mg at night to help with tinnitus and hyperacusis, which are very severe. I stopped taking the 7 mg of Quetiapine at the same time.

However, I am struggling to sleep again, and I do not want to develop chronic insomnia like last time. What are my options?

Should I take both medications at the same time? Or should I take Nortriptyline in the morning? I am worried it will make me feel like a zombie during the day.

I have reached my limit and am literally crying out for help. Doctors do not seem to care.

I should add that I am taking Nortriptyline as part of the NeuroMed protocol because I am eight months in with hyperacusis and tinnitus, and things have only gotten worse. Desensitization has not worked for me, but I keep trying. My tinnitus is extremely loud, and if it would just settle down, I could at least tolerate the hyperacusis, which has left me housebound.

 

[Nick47]

I have been taking a very low dose of Quetiapine, 7 mg (a quarter of a 25 mg pill), for sleep for a couple of years. My doctor had previously prescribed Mirtazapine, but it only kept me awake.

Recently, I managed to wean off Quetiapine, but after experiencing noise trauma, my hyperacusis and tinnitus became severe. I went back on it to help me sleep.

Two nights ago, I started taking Nortriptyline 10 mg at night to help with tinnitus and hyperacusis, which are very severe. I stopped taking the 7 mg of Quetiapine at the same time.

However, I am struggling to sleep again, and I do not want to develop chronic insomnia like last time. What are my options?

Should I take both medications at the same time? Or should I take Nortriptyline in the morning? I am worried it will make me feel like a zombie during the day.

I have reached my limit and am literally crying out for help. Doctors do not seem to care.

I should add that I am taking Nortriptyline as part of the NeuroMed protocol because I am eight months in with hyperacusis and tinnitus, and things have only gotten worse. Desensitization has not worked for me, but I keep trying. My tinnitus is extremely loud, and if it would just settle down, I could at least tolerate the hyperacusis, which has left me housebound.

@Yellowblue44, I'm not medically qualified, but I would suggest taking both. You might also consider adding Magnesium.

 

[Arnaudswiss]

@Yellowblue44, I'm not medically qualified, but I would suggest taking both. You might also consider adding Magnesium.

I can feel your pain, and I'm very sorry for what you're going through.

I'm also a tinnitus sufferer and have been taking Mirtazapine for over six months. It hasn't affected my tinnitus in any way, but it has helped with sleep, anxiety, and depression.

May I ask how long you've been taking it and at what dosage?

Kindly,
Arnaud

 

[Nick47]

May I ask how long you've been taking it and at what dosage?

Years and years at 22.5 mg.

 

[Arnaudswiss]

Years and years at 22.5 mg.

And it doesn't help you sleep anymore?

 

[sspencermo]

I came across another otologist who considers that tinnitus that fluctuates in loudness and/or tone is likely to be an atypical migraine. In this lecture from his YouTube channel he talks in more detail about this and the treatment options from about 28 minutes in.



If you're worried about clicking on the link, you can also search YouTube for Migraine and Tinnitus.

View attachment 59299

His treatment approach has a lot of similarities to the treatment protocol suggested by Dr. Djalilian and has explanations of the mechanisms he believes are involved.

Wow -- this was really helpful -- thanks for posting it.

 

[Angophora]

Wow -- this was really helpful -- thanks for posting it.

I recall that he says in this video (or another) that the migraine protocol is most suitable for people whose tinnitus loudness fluctuates. The idea is that there is a baseline level of tinnitus associated with hearing loss, but the spikes are migraines.

It's so validating to hear him refer to tinnitus loudness as varying—especially when audiologists and TRT proponents often insist it is always the same volume and that "you're just focusing on it more."

 

[Yellowblue44]

Dr. Hamid Djalilian is relying on a study conducted at his own university to sell his protocol for $5,000.

See the study below. It is also referenced in his reactive tinnitus information sheet on his website.

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

The majority of patients with hyperacusis demonstrated symptomatic improvement from migraine prophylaxis therapy, as indicated by self-reported and audiometric measures. Our findings indicate that, for some patients, hyperacusis may share a pathophysiologic basis with migraine disorder and may...

pubmed.ncbi.nlm.nih.gov

This study has purposely selected individuals with LDLs of 81 dB, practically normal hearing. After administering his protocol, they improved by 5 dB to LDLs of 86 dB. The study goes on to mention that "this was a significant improvement."

Dr. Hamid Djalilian then claims on his website that this study supports his assertion that his protocol can treat severe hyperacusis and severe tinnitus patients.

Surely it must be illegal to sell a protocol based on a flawed, possibly corrupt study.

Is it just me, or have others not questioned this?

 

[AfroSnowman]

I recall that he says in this video (or another) that the migraine protocol is most suitable for people whose tinnitus loudness fluctuates. The idea is that there is a baseline level of tinnitus associated with hearing loss, but the spikes are migraines.

It's so validating to hear him refer to tinnitus loudness as varying—especially when audiologists and TRT proponents often insist it is always the same volume and that "you're just focusing on it more."

I think my tinnitus loudness is constantly cranked up to a very high baseline (with some variation, but usually quite loud). What I do experience are fluctuations, ranging from a blessedly calm, survivable hiss to a painful symphony of different piercing noises.

most suitable for people whose tinnitus loudness fluctuates.

Do you think he is talking about just loudness or that kind of shifting quality as well?

 

[marqualler]

@marqualler, when you started his protocol, what symptoms of your tinnitus and hyperacusis led the doctor to determine that they were the same as a silent migraine?

Dr. Hamid Djalilian doesn't take on UK patients, so I will be following his protocol through my doctors here. Any information you provide would be very useful. I'm really struggling with both severe hyperacusis and tinnitus and need some relief.

Many thanks.

@MaxRabbit, can you clarify which symptoms didn't apply to you that allowed you to follow the protocol? Thanks.

If I recall correctly, the main symptoms that indicated I would be a good candidate for their treatment were that my tinnitus was fluctuating and reactive.

I did not end up trying the Nortriptyline/Topamax protocol, but I did follow—and continue to follow—the nutraceutical protocol. For what it's worth, I have experienced some natural improvements that I cannot attribute solely to this protocol. However, I felt supported as a patient, and their CBD and sound therapy helped me through a rough patch.

Hope that helps!

 

[Angophora]

Do you think he is talking about just loudness or that kind of shifting quality as well?

I'm not sure. Sorry.