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.