Tinnitus After a Festival

[Wouter De Blaere]

Hello everyone,

I hope you're all doing well. I wanted to take a moment to introduce myself and share my story.

Life was good until May 2023, when I ended a relationship that had drained a lot of my energy. Although I felt more relaxed afterward, I struggled with light depression. On June 9th, I attended a festival where the music was incredibly loud. No one else was wearing earplugs, but I managed to get some and wore them for about four of the seven hours I was there. Despite the earplugs, I found the noise overwhelming, as if my brain couldn't process it.

When I got home and went to bed, I woke up in the middle of the night with a noise in my right ear. It freaked me out, and I couldn't sleep. The next day, I called in sick to work and visited the doctor, who removed a lot of earwax, which significantly improved my tinnitus. However, the noise was still loud enough to bother me at night. I consulted several ENT specialists, but all the tests came back normal, and they told me there was nothing they could do. The stress piled up, and I started sleeping only 1-2 hours per night. My tinnitus became very reactive, with everything around me seeming to ring. Things quickly went downhill, and I developed extreme fatigue and hyperacusis. At one point, I even considered suicide.

At my lowest, my parents took me in and took care of me (I lost 10kg in one month). Slowly, I began to learn how to sleep again, albeit with medication. After four months, I was still struggling, but then I met Dr. De Boedts and Dr. De Ridder. I live in Gent, Belgium, where they work. Dr. De Boedts focused on peripheral tinnitus, which didn't help me much since my tinnitus had become more central. He referred me to Brai3n, Dr. De Ridder's clinic. Dr. De Ridder prescribed a combination of Dianxiet, Rivotril, and Aripiprazole. This was complemented by EMDR therapy, ten sessions of neuromodulation, and microdosing mushrooms.

Things started to improve. My sleep returned to normal, the inflammation subsided thanks to EMDR, and the reactivity of my tinnitus diminished significantly.

After a few months, we decided to taper off the medication, which initially worked, but once I stopped completely, I became depressed and suicidal again. I resumed taking Dianxiet, which always improves things, though it also causes side effects like brain fog. In May 2024, I stopped all medication except for Rivotril, which brings me peace knowing it helps me sleep.

Throughout this ordeal, I never stopped living my life. I continued working, going out with friends, and dating. I refused to let this condition control me.

But the battle continues every day. Some days are better than others, but the quality of life is still not where I want it to be. I'm considering going back on medication and trying more neuromodulation. What keeps me going is the love I have for my six-year-old daughter—how could I ever hurt her? The efforts being made by people like Dr. De Ridder also give me hope, even though progress seems slow.

Here I am, 13 months into living with tinnitus. Here's what I've learned:

• Don't let it scare you—it only makes things worse.
• Live a normal life. Sounds aren't dangerous, but if you go clubbing, wear protection.
• Take it day by day.
• Stay positive.
• Avoid internet forums or talking too much about it with friends (I won't be logging in here frequently).
• Accept things as they are instead of overthinking or resorting to a fight-or-flight response.
• The combination of neuromodulation, EMDR, microdosing mushrooms, and medication has had a positive effect.

I'm hanging in there, though it's hard, and sometimes I wish I had cancer instead of this. But we can't give up—not for ourselves, and not for our loved ones.

May science find a cure, and I wish you all the best.

Wouter

 

[Wouter De Blaere]

Something I haven't mentioned is that I seem to experience neuropathic pain in my brain after prolonged exposure to noise. It's not about the loudness, but rather the duration. If it were the loudness, I'd assume it was hyperacusis, but that doesn't seem to be the case. It feels like I can only tolerate a certain amount of noise each day, and if I exceed that, my brain—or perhaps the nerves—start to hurt. Can anyone relate to this or explain what might be happening here?

 

[Nick47]

Something I haven't mentioned is that I seem to experience neuropathic pain in my brain after prolonged exposure to noise. It's not about the loudness, but rather the duration.

@Wouter De Blaere, yes, I'm experiencing this six weeks after my setback. I believe it's caused by the middle ear muscles tensing up the eardrum as a protective measure, which is likely linked to hyperacusis.

 

[UKBloke]

Something I haven't mentioned is that I seem to experience neuropathic pain in my brain after prolonged exposure to noise. It's not about the loudness, but rather the duration. If it were the loudness, I'd assume it was hyperacusis, but that doesn't seem to be the case. It feels like I can only tolerate a certain amount of noise each day, and if I exceed that, my brain—or perhaps the nerves—start to hurt. Can anyone relate to this or explain what might be happening here?

@Wouter De Blaere, I'd tend to agree with what @Nick47 has said above that the symptoms outlined, delayed as they may be, are likely linked to hyperacusis.

Frank Magnusson over at Hyperacusis Research wrote an interesting account of his own experience. In it, he mentions the delay factor, or "inner-ear lag" to exposure before symptoms set in, typically 36-48 hours.

I've noticed similar behaviour with my own hyperacusis, but it tends to wax and wane on timings. It's a very odd condition.