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.
-
