HYPERACUSIS - TINNITUS, English

THIS IS A SWEDISH BLOG, PERHAPS TRANSLATED INTO BAD ENGLISH BY A MACHINE. SO I MADE AN ENGLISH VERSION THAT'S BETTER, BUT IN ORDER TO READ IT YOU NEED TO CLICK ON "ORIGINAL LANGUAGE"!

The reason for this translation is that I found some interested readers (but confused by the Google "english") out there. I want this information to go out since it might help somebody!

This kind of hell is one of the worst that you might experience. What causes the condition?

Reasons often mentioned are: stress, tension, anxiety and overexposure to high sounds. What rarely is mentioned though is MEDICINE DAMAGE! I guess that pharmaceutical companies want to keep this as secret as possible. Some medicines are likely to damage your ear nerves eventually and that information might be available to you, but if a medicine might worsen your tinnitus it is usually not mentioned anywhere!

 Yes, stress will make EVERYTHING worse but when it comes to very loud tinnitus I don’t see this as a good explanation. It’s not fair to make physical problems into mental ones.

 In my case it was Chloroquine Phosphate that gave me irreversible damages – after using it for 20 years. I had my eyes checked every year since the most common side effect is eye damage. Well, I'm not a normal person so I tend to stick to the less common side effects, which in this case is ear damage".

 The brain could be damaged after 15 years of use. I knew that, but the alternative to Chloroquine in those days was death, if you had the most aggressive form of rheumatic arthritis - so what choice did I have?

 One summer day I was sitting close to my sisters little child and he cried out very loud. The sharp sound kind of got stuck in my brain for three days! I knew then that something was very wrong, but I felt relieved went the sound went away, and just hoped for the best.

 A month later my husband and I played with our instruments, not very loud, when suddenly it felt like my brain exploded and it was filled by a terrible noise. My whole world was blown into pieces and nothing would ever be the same again!

 I now had got hyperacusis and was now "allergic" to high pitch sounds . When my husband was reading the newspaper it sounded like a sudden burst of landslides, earthquake, tsunami and the end of the world: All at once, while I was quietly drinking my morning coffee.

The slightest sound made me startle and a forks collision with the sink for me was a disaster! The music we had lived for was now my worst enemy.

 The doctor in the Healthcare Center had a look into my ear and found that the eardrum was intact and therefore everything was well. No referral to a hearing specialist was sent and no compassion or help was available. When I started to cry the nurse shouted at me: YOUR EARDRUM HAS NOT BEEN BROKEN!

No, it was just my life and my heart that had broken …

 After some months the signal in my brain had calmed down a little bit but then I started my new medication for Rheumatic Arthritis: Methotrexate. After a while I noticed that this medicine made the signal go up again. I panicked since I was stuck. Without Chemotherapy treatment I would die - but how could I ever learn to live with tinnitus???

 I had moved to Gothenburg and the doctors there were new to me and I to them.

 The Rheumatologist-doctor stared at me and said:

 -        Oh, so you claim that you have tinnitus?  Do you have any objective parameters to prove that?

 I was stunned and after some more words I just left the room to go on searching for a solution on my own.

 I got to see the ear specialist at the hospital, who established that there was a mild hearing loss in the left ear, but she had no "objective parameters" to give me, that could verify my tinnitus.

 - So, it becomes worse if you take Methotrexate, she said? HOW DO YOU SPELL THAT?

- I've already read Fass, Swedish information about medicines and their side effects, and it says nothing about tinnitus there. This is probably not a medication that usually creates tinnitus, but it obviously makes it worse.

- Really? Well, it’s not my task as an ear doctor to know how medicines might affect the ear nerves.

 After this event I got an appointment with a tinnitus counselor, who gave me a white-noise machine. I should set it at low signal, and then the brain was supposed to get used to the sound and disconnect it. Since my primary problem is hyperacusis (not tinnitus) my brain was pretty silent when not exposed to sounds, but because of the machine there was now constant noise in my head, so I gave up and returned the "noise machine" to the hospital.

 I continued my life with my new companion: the earplug! I slowly got more and more skilful at adjusting my lifestyle to the injury. I learned which were the “safe” cafes, restaurants and places. I bought relaxing, distracting background music, with a lot of base, since my problem was the treble. I learned to meditate – that’s the good thing about this disability!

 I guess Steven had a bad conscience because he abandoned me when I was really ill in RA, so he called me up and said:

NOW I WANT TO SHOW YOU WHAT REAL HEALTHCARE IS!

He invited me to a little tour through the English healthcare system, which began where it always begins in England: I met his GP, i.e. family doctor, which he had had for 20 years. This doctor wrote a referral to England's foremost expert in rheumatoid arthritis and a referral to one of the leading ear doctors. My friend paid cash so I didn’t have to wait for help.

 The RA doctor said:

- You have the worst kind of RA. You must continue with Methotrexate or you will die!

 The Audio Neurologist let me undergo a number of tests. The machines were often small, unobtrusive and quiet. They showed that I almost certainly had chronic tinnitus. And so I got the "objective parameters" that Sweden had not been able to give me!

 The ear doctor said: "Yes, Methotrexate is a well known agent to produce tinnitus: It is best if you stop using the medicine. He let me go with closed eyes on a painted line to test the sense of balance, which was found to be bad. Ear damage can cause unbalance.

 After that I met the GP once more since he both sends out referrals, receive the answers, and make a compilation of these that leads to a conclusion:

 - My conclusion is that you must continue taking Methotrexate. If you stay in England, you go in CBT for patients with tinnitus. But, I had to go back home and therefore I never got that CBT.

 After this journey I hade a very valuable paper in my hands: I had objective parameters that showed that I had tinnitus!

 Some years later I had moved to a small town because of my son’s schooling and I hadn’t got enough contacts there. In order not to go insane I HAD TO listen to the TV or the radio, but that wasn’t possible more that some minutes because of the hyperacusis. I lived in a silent vacuum and was steadily filled with more and more anxiety, so I ran to the Emergency asking for immediate psychiatric care. After a lot of arguing they let me have a week vacation from loneliness.

 While I was waiting for a doctor to talk to a huge anxiety attack was building up within me and I rushed into the office, collided with my future doctor and gasped: "Xanax! NOW! " She saw what was happening, so she immediately gave me an Xanax and I walked back to my bed, where I soon felt the calming effect of the pill. I wanted to feel even better by listening to my favorite music for ten minutes, that’s all my ear could handle. After ten minutes complete silence prevailed in my inner ear! I continued to listen yet half an hour - still no reaction from the ear nerve. After two hours of listening there was no signal! I was shocked and overwhelmed by happiness;

I had been cut off from life during FOUR YEARS and now I was free! I WAS FREE TO SING AND PLAY THE GUITAR AGAIN! I could go on making and listening to music!

 I rushed off to the tinnitus-counselor at the hospital and said excitedly:

- There must be a scientific study that says that Xanax helps with tinnitus?

- Yes, she said, and took a book out of the bookshelf. Here it is! She showed me the book:

 Tinnitus - WHEN THE EAR IS FILLED WITH NOISE. Author: Alf Axelsson and Ulf Schenkmanis. (This book probably only exists in Swedish, but there have been similar studies made throughout the world)

 On page 102 the scientific study on Xanax, with a control group, is reported. 80% proved to become significantly better!

 The persons in the study turned the drug down because it made them tired??? Severe tinnitus is such a painful condition that many people take their own lives so I guess the participants were not ill enough. The fatigue disappears after a month.

 Swedish doctors don’t want to prescribe Xanax, so it takes two things to get this medication for tinnitus prescribed:

1.  Proof that you have tinnitus
2. You need to find a study in your own language that shows that Xanax is a good help for 80 % of us.

 I also want to share the name and address to the specialist who had the right machines and the knowledge to interpret the results correctly. The data is from 2011, but hopefully he is still there:

 Professor. BA Al-Shihabi, Department of Otolaryngology, Lister Hospital, Stevenage, UK Tel. 00447973347417, E-mail: bashihabi@hotmail.com .

 A few words from the survey, that changed my life:

 "Tympanogram showed ... We also masked the tinnitus to 55 dB and unfortunately there was no change in the tinnitus after 60 seconds of masking which may well point to a more resistant type of tinnitus ... OTOACOUSTIC SPONTANEOUS EMISSION TESTING, Which is an objective test of tinnitus , showed signs of spontaneous activity in the left cochlear which might well generate the tinnitus. "

 Tympanometry = method to determine the pressure in the middle ear

 • SOAE = measurement of spontaneous otoacoustic emissions, activity in the hair cells, without sound stimulation

 A few years later, I had a brief relationship with a man from Scotland. I visited him in summer 2011. We were often at his mothers´house. One day a neighbor came to visit and she said:

- I've been to the doctors and tried out my hearing aids for tinnitus!  

- Do you mean white noise?

- No, it's not white noise! It first corrects my hearing loss, and then protects against noise. There is a small plate that captures the sounds and removes the harmful sounds. Now, the device will be tested a few times so that it suits just me.

 I didn’t get the name of the machine, but if I do I’ll write it here.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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