How to Stay Positive with Severe Reactive Tinnitus?

[object16]

About 35 years ago, I started noticing tinnitus, and it really freaked me out since I already knew there was no cure except for white noise. To "prevent it from getting worse," I began wearing hearing protection, eventually all the time—24/7. This led to disastrous hyperacusis and worsening tinnitus, pushing me to frequent suicidal thoughts and a life that felt like a living hell. I had been evaluated at a top center back then, but they dismissed me, thinking I was "nuts," since hyperacusis was considered extremely rare at the time. They couldn't believe I had something so uncommon.

My life has been pretty miserable; it basically sucks. Somehow, I've managed to keep going. About 20 years ago, I was forced into a situation where wearing hearing protection wasn't possible, except to avoid anything obviously noisy.

Now, I have severe reactive tinnitus. Everyday sounds like a truck backfiring, a fire alarm, overhead noise, or even a grocery cart crash make my life nearly impossible. I can't go anywhere, and I have to stay super protected—any noise can trigger a spike. This isn't something that can be undone. I had another consultation at a teaching center 10 years ago, and again, the specialist treated me like an idiot, suggesting I take a few shots of whiskey, which is absurd considering the medications I'm on. A few shots could be dangerous or even fatal, and unfortunately, I still want to live, so I'm stuck making the best of a bad situation.

I hang around here occasionally to see if anything has changed. At least now, they understand what we're dealing with. About 15 years ago, my sympathetic local ENT contacted his neurobiologist friend at another teaching center, who told him, "Your patient is already doing everything correctly. There's no point in him coming here for a consult since we have nothing new to offer him."

So, I have that—I'm doing everything right, even if I'm in this miserable state. Experts say the brain desperately wants to heal, but it's stuck in a "phantom limb" type phenomenon that doesn't respond to conventional treatments. Cannabinoids only seem to worsen my spikes, although they resolve once out of my system. I've got an old prescription for morphine 5 mg, and while it puts me to sleep and gives me some relief, no one will prescribe it long-term, and living like a zombie isn't much of a life.

Here I am, debating whether to start another "please help me" thread in a support forum or just continue doing what I know works and avoid what doesn't.

Now, as I get older, it's becoming harder for me to keep things straight and to function normally. I try to avoid falling into the swirl of depression, but it's challenging given everything I'm dealing with. Being depressed only makes things worse, so I'm left wondering—how do I stay positive?

 

[Pinhead]

You're one of my favorite posters here. I recall you saying some kind of special marijuana blend helped. Is that not the case?

I also have severe reactive tinnitus. I am 34, and I am sure it will worsen over time, as it already has beyond measure. My therapist today just couldn't really understand how I had not even an inkling of positive forward thinking. I look forward to nothing, and the noise in my skull is why.

 

[Nick47]

@object16, have you looked at the NeuroMed protocol?

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

There is a thread under Treatments:

→ NeuroMed Tinnitus Program — Founded by Dr. Hamid Djalilian

 

[object16]

I'm really grateful for the replies to my "please help me" thread.

I just read the NeuroMed description and will try to adopt as much of it as possible on my own at home. I drink a lot of green tea, which does contain caffeine, though not as much as coffee, and it also has antioxidants. So, while green tea might not be perfect, I haven't noticed it affecting my tinnitus one way or another.

A friend of mine has developed a novel oral cannabinoid formulation using GTR Seeds CBDV Vitality strain and THCV Garlic Berry strain. We have a lot to be thankful for when it comes to GTR—a high-tech Oregon-based company that specializes in ultra-low THC cannabis, classified as hemp. They have onsite DNA sequencing and HPLC technology, allowing farmers to grow acres without DEA restrictions due to no limits on plant count.

I've tried the new CBDV formulation, and it seems to be helping without causing spikes. It also helps me sleep, especially when combined with a mini dose of THCV, which also doesn't cause any spikes. For the first time, I actually slept through the night.

I have my own dietary regimen enriched with soy isoflavones, based on nutraceutical literature. Soybean sprouts can be challenging to prepare; I initially used the peroxide method but later discovered the peracetic acid modification, which combines acetic acid (vinegar) with hydrogen peroxide. The challenge with soybean sprouts is preventing fungal overgrowth, which can ruin the batch. Peracetic acid, a potent oxidizing agent with strong antifungal properties, solves this issue. After sprouting, I grind the beans and culture them in superheated milk with probiotic yogurt organisms, which cleave the glycone part of the isoflavone. This process ensures that the aglycone isoflavones, which are readily absorbed in the small intestine, are retained, while glycone isoflavones, which the body cannot absorb, are minimized. Isoflavones are estradiol analogues with non-feminizing steroid-like benefits, which could promote sleep and possibly prevent neurodegenerative diseases. Although high-strength isoflavones haven't been widely studied, I'm conducting my own "study" at home (lol).

I'm also committed to regular exercise and adhering to my cultured soybean sprout-enriched diet. My MSW recommended a CD of progressive muscle relaxation to help me fall asleep and reduce anxiety. She specializes in CBT and chronic pain management, so we can discuss various topics. Although she doesn't have specific training in tinnitus, she is highly experienced in helping the brain cope with adversity.

I've done a lot of sound therapy, and currently, I listen to the radio during the day and play a CD of digitally modified Enya and Restful Rain (pink noise) at night, set on low volume.

Thanks again, everyone!

 

[Kah Povi]

I'm certain that anxiety is a major factor in causing tinnitus spikes for me. So, focusing on reducing anxiety is key, though it can be challenging. I have some beliefs that might resonate with others—one being that my tinnitus worsens with excessive use of digital devices. Since my tinnitus started in 2014, I've gone through cycles of relief and hope, followed by spikes and fear. This latest spike is related to both personal challenges and an increasing reliance on digital distractions.

Returning to Tinnitus Talk feels like a healthier way to engage with the internet, as opposed to gaming, social media, or consuming stressful news. Those distractions might offer temporary escapes, but I'm certain they've only increased my anxiety and worsened my tinnitus lately. Just as I once relied on Klonopin, which contributed to this issue initially, I've slipped into a kind of screen addiction.

I understand your emphasis on staying positive. It reminds me that if tinnitus makes me feel trapped, I might find relief by breaking free from habits that ultimately increase anxiety or are otherwise unhealthy. Tinnitus can make us feel powerless, but perhaps we can regain a sense of power and freedom by taking control in ways that don't feel desperate, if that makes sense. For me, that means practicing meditation, reducing internet use, playing tennis, reading, and finding comfort in something wiser than myself.