Our interview today crosses the Atlantic Ocean to a place 150 kilometers northwest of Paris, France. The young woman we are speaking with has both tinnitus and hyperacusis.
Interviewer: How long have you been suffering from hyperacusis, Ambre? In addition, when did your doctor diagnose you?
Ambre Mino: I have suffered from tinnitus since the age of 15 and hyperacusis since age 19, I'm 33 years old today.
Interviewer: Do you know how it happened? What caused it?
Ambre Mino: When I was 15, I had never heard those words "tinnitus and hyperacusis"
I had several acoustic traumatic experiences in a short time.
Interviewer: What was it like for you? How did you know something was wrong? What caused the trauma may I ask?
Ambre Mino: When I was a child, I was more sensitive to noise than others were. At school, I had an earache when I attended school performances and special events. The noise was omnipresent at home since we were twelve children. My brothers were musicians and at the age of 8 years, I attended the wedding of one of my brothers, the music was very loud. I felt unwell and my ears started ringing, it continued for three days then it calmed down.
At the age of 13, I went to a bar in Germany and the music was loud, I came away with my ears whistling, it lasted five days. Then at age 15 a firecracker exploded near me, the buzzing became a whistling sound in my ear and that was when I started to worry. I hear it all the time in the evening. I have to put my radio on every night to fall asleep.
Interviewer: Ambre, when did you first see a doctor about your issues? Did the doctor dismiss it as just an ear infection or did they know something more serious was wrong?
Ambre Mino: I went to see an (Ears, Nose, and Throat Specialist) ENT and he gave me an audiogram and told me that I had a small about of hearing loss and acute tinnitus, first time I heard that word, I didn't think it sounded bad.
Interviewer: So your hyperacusis is due to many loud noises and the traumatic events you have experienced growing up as a child?
Ambre Mino: The doctor told me it could not happen; he gave me vasodilator.
We decided to look into the medication the doctor gave to Ambre and here is what we found.
"Vasodilators are strong medications and are generally used only as a last resort, when other medications have not adequately controlled your blood pressure."
These medications have a number of side effects, some of which require taking other medications to counter those effects.
Side effects include:
• Chest pain
• Rapid heartbeat (tachycardia)
• Heart palpitations
• Fluid retention (edema)
• Nasal congestion
• Excessive hair growth
Ambre Mino: I was afraid and I had strong headaches, so my doctor told me to go to the hospital for further tests and there an ENT horror of my life. The ENT has said there was nothing they could do, and from there I told myself that life is not worth living and I sunk into a deep depression.
Interviewer: How many times did you have to voice your concerns to the ENT before he took it serious or is it still ongoing that it feels like no one is listening? Do you take medications for your depression?
Ambre Mino: I was depressed because I am a music lover and I wanted to make a career out of it, so you can imagine my broken dream.
Interviewer: Yes, that is very difficult to find oneself at the end of a dream.
Ambre Mino: I went back to the first ENT because I could not stand the noise of traffic. I could not stand the noise of the class I studied; I had to miss two months because I was so ill, I lived alone in a dorm room and at 20 years old. I attempted suicide because I did not see my life with this pain. Thankfully, a girlfriend arrived and I survived. I spoke with a very nice man who has said unlike the ENT, that there were things to try and that I needed to protect my ears. It is thanks to him that I had hope again.
I had since decided to go see an acupuncturist and when I went there, I had tinnitus very strong and hyperacusis average. After 10 sessions, I had tinnitus in both ears, but less strong and small drop of hyperacusis, which lasted 30 sessions. I was going for acupuncture sessions and I could no longer afford to eat because of the cost. I started having seizures, hyperventilating and anxiety attacks.
I stopped and tried acupuncture homeopathy, no effect, and then I went to several psychologists, psychiatrists that only made things worse, I fell back into a great depression.
Interviewer: So your health coverage did not cover the acupuncture.
Ambre Mino: No, it did not cover acupuncture. I even tried behavioral and cognitive therapies, but no effect.
Interviewer: So you have had proven improvement with acupuncture but could not afford to pay for it while nothing else helped.
Ambre Mino: Yes, but I stopped improving also because after 30 sessions, there was no further improvement and acupuncturist told me he could not do better. I went back to my doctor, he gave me xanax is all but did not affect me and I could not leave my house.
I wrote to specialists in the United States and Germany to help me, because I could not find anyone in France, such a disease is considered in my country a symptom of crazy people, mental illness here.
Interviewer: Did you get any advice from writing people in the United States or Germany?
Ambre Mino: Foreign specialists told me, I had to go to either the United States or Germany to treat me if I could not find anyone in France. I did not have enough money to go there.
Interviewer: And you are still in France now?
Ambre Mino: Yes, I am still in France but I have no choice.
Since 2003, I take lexomyl and without it, I would not be here. It has helped me overcome even if it does not help the hyperacusis. As anxiety is related to these diseases. I also took sleeping pills and anti-seizure medicine for 2 years.
Interviewer: What do you hope telling your story will achieve?
Ambre Mino: In 17 years, the Ears, Nose, and Throat Specialists have not ENT change here in France. They still say there is nothing they can do for hyperacusis.
The shortage of doctor's is not only in France. When looking into our very own local region here in the United States we found doctors to be slim here as well. The problem is not only finding a doctor who specializes in hyperacusis but also getting the treatment needed which, many health insurance coverage's fall short on.