My tinnitus story

a symptom medical science has not understood

© 2023 Werner Froeynes

Tilrettelagt for ebok av eBokNorden as

ISBN 978-82-8328-299-3 (ePub)

Are you one of the approximately 800 million people who suffer from tinnitus?
Tinnitus has many variations. A thin high-pitched beeping, a low-pitched rumble, a monster in the head. And everything between these extremes.

I have heard many of these variations. Thin, low, fragile violin tones, unpleasant howling, crackles, welding, New Year's rockets and the extreme monster.

It started with a small beeping sound in my left ear…

My story goes back to 1991. I was 26 at the time.

The book is about my search for answers to what had invaded me and from 2010 gave me an insane tinnitus. It was a long journey to find an effective treatment, and a physical journey that brought me to England, the United States and Germany.

In the end, I found the cause; an insidious, low-grade infection with both bacteria and virus. In Norway, I met a health service with hospital doctors who did not want to understand, nor were they interested in researching the cause of my tinnitus.

I found the cause of my tinnitus, but met hospital doctors who did not understand, nor were they interested in researching the cause of my tinnitus.

I was let down by the Norwegian health service.

There are probably several causes of tinnitus, but I suspect that low-grade infection, which starts in the gut system and then infects muscles, bones and tendons, must be an important cause. Medical science seems to be groping blindly, with lofty theories about phantom sounds created in the brain.

The solution is probably much simpler.

Thank you for taking the time to read my story. If you suffer from tinnitus, I hope your story is not as extreme as mine, but even so you might find something you recognize? Do you have an idea of what has caused your tinnitus? Maybe even the cause of your tinnitus is the same as mine?

TO MY DEAR LINDA

FOR YOUR LOVE
AND FOR STANDING BY ME
TIRELESSLY.

Foreword by Prof.Emeritus Paal Aukrust, PhD, MD.

The interaction between microbe and host: both benefit and harm.

Although many new antimicrobial agents have been introduced, infections are still a major challenge in our time, also in Norway. Among other things, the COVID‐19 pandemic illustrated this – we are still far from invulnerable, even in the so‐called high‐income countries. The spread of antibiotic‐resistant microbes, outbreaks of "old infections" that we thought we were done with, such as whooping cough, measles and polio, are constantly a challenge. Travels to new and untouched areas of the globe can be exciting, but this travel in untouched nature can also have its negative sides, such as bringing "new" microbes from animals and plants over to humans.

Infections can also in some cases cause or trigger more chronic conditions such as autoimmune and inflammatory diseases. This may be an expression of a chronic infection, but it can also, and perhaps more often, be a matter of more indirect mechanisms. For example, an inflammatory reaction against the microbe can continue on its own even when the microbe is gone, e.g. that certain structures in the microbe resemble structures in the host's organs ("molecular mimmicry") and that the immune response that is supposed to attack the microbe also attacks the host. In some cases, the immune response to the microbe can hit the "innocent neighboring area" and again the host will suffer ("bystander activation"). Such mechanisms have been shown in well‐known autoimmune diseases such as Systemic Lupus Erythematosus (SLE) and Rheumatoid Arthritis. However, these mechanisms do not necessarily mean that these diseases should be treated with antiviral or other antimicrobial agents. In many cases, the inflammatory process that was triggered by the microbe will eventually be driven by immunological mechanisms partially independent of the initial triggering microbe.

Enteroviruses is a large virus family which consist of many subgroups such as Echovirus, Coxsackievirus and also Poliovirus. Most acute infections caused by enteroviruses are harmless and cause few symptoms, but can in some cases cause meningitis, inflammation of the heart muscle and significant rashes and fever, and most people know polio as a dreaded disease. In recent years, important studies have also emerged that indicate that enteroviruses can trigger autoimmune diseases. In particular, there has been a lot of focus on the connection between enterovirus infection and the development of type 1 diabetes mellitus. Among other things, a correlation has been shown between the detection of molecular traces (polymerase chain reaction/PCR) of enterovirus infection and the development of autoimmune reactions against islet cells in the pancreas and/or the development of type 1 diabetes. A Norwegian group showed that treatment with the antiviral agents pleconaril and ribavirin, where at least the former has been shown to be effective against enteroviruses, in patients with new‐onset type 1 diabetes mellitus provided better blood sugar control as an expression of possibly better preserved islet cell function in the pancreas. There is also some evidence that enterovirus infections can trigger other autoimmune manifestations, including in the brain.

Pharmacist Werner Froeynes has written a comprehensive overview of possible links between enterovirus infections and a number of clinical manifestations. I do not agree with all of his assessments, such as the importance of antibody levels as evidence of ongoing infection. As mentioned above, it is also not evident that although a virus can trigger chronic inflammatory reactions that the solution is antiviral therapy. It is also well known that antimicrobial drugs, and perhaps especially antibiotics in themselves, have immunomodulatory effects, so that the effect of such treatment is not alone evidence of ongoing infection. In any case, this is a field we by no means know enough about and where we need new knowledge. Froeynes should be commended for fearlessly shedding light on this important area of medicine: the interaction between microbe and host. Froeynes' criticism of current practice should inspire further research both on possible molecular mechanisms and on possible clinical consequences also when it comes to treatment in this challenging field.

Hamar 280724

Prof. Emeritus. Paal Aukrust, PhD, MD.

Department of Internal Medicine Research, Oslo University Hospital, Rikshospitalet.

Former head of the Section for Clinical Immunology and Infectious Medicine, Oslo University Hospital, Rikshospitalet.

Literature

Baggen J, et al. The life cycle of non‐polio enteroviruses and how to target it. Nat Rev Microbiol 2018; 16:368‐81.

Baker RE, et al. Infectious disease in an era of global change. Nat Rev Microbiol 2022; 20:193‐205.

Chen BS, et al. Enterovirus and encephalitis. Front Microbiol 2020:11:261.

Hussain HM, et al. The role of viral infections in the development of autoimmune diseases. Crit Rev Microbiol 2019; 45:394‐441.

Isaacs SR, et al. Enteroviruses and risk of islet autoimmunity or type 1 diabetes: systematic review and meta‐analysis of controlled observational studies detecting viral nucleic acids and proteins. Lancet Diabetes Endocrinol 2023; 11:578‐92.

Krogvold L, et al. Pleconaril and ribavirin in new‐onset type 1 diabetes: a phase 2 randomized trial. Nat Med 2023; 29:2902‐8.

Molina V, et al. Infection, vaccines and other environmental triggers of autoimmunity. Autoimmunity 2005; 38:235‐45.

Sauer A, et al. Antibiotics as immunomodulators: a potential pharmacologic approach for ARDS treatment. Eur Respir Rev 2021; 30:210093.

Yamaya M, et al. Anti‐inflammatory effects of medications used for viral infection‐induced respiratory diseases. Respir Investig 2023; 61:270‐83.

Innholdsfortegnelse

Intro - the years 1987-2009.

CPAP and manual therapy – the year 2010

This must be an infection! -Year 2011

More antibiotics and surveys in London-year 2012

A terrible interaction experience - year 2013

More antibiotics and new surveys in London -year 2014

Focus on excessive bone - the year 2015

To the BCA clinic-year 2016

Enterovirus- the smoking gun? - the year 2017.

Battle with Rikshospitalet - the year 2018

Is it possible to win? - the year 2019

Immunoglobulin and optimism. The year 2020

Hoping to detect the virus! The year 2021

At a crossroads. The year 2022

Autumn 2024 – some antibiotics have documented effect on viruses!

Enterovirus – an underestimated adversary

Borreliosis and coinfections

Tinnitus – an underrated symptom

Graphical representation of blood samples analyzed in Germany.

REFERENCES:

Intro - the years 1987-2009.

I was admitted as a student to the pharmaceutical department at Oslo University, Norway, in 1987. It is a rather demanding study, but with good fellow students and hence a good environment, these five years became one of the most rewarding periods of my life. Before I came to Oslo and to campus Blindern, I studied some geology and physics and had also worked for a year in a geophysical company. I was therefore 2-3 years older than most of the others in my year at Blindern. Life was good and I was generally in good health. I moved to Kringsjaa Studentby in the autumn of 1987 and quickly found out that Sognsvann and Nordmarka were an excellent area for exercise and training. Almost daily, for several years, I put on my trainers and ran long trips up to Ullevaalseter and around Nordmarka. I really appreciated the privilege it was to stay so close to such a great area of exercise and recreation.

Spring 1991 happens something that would become into a big problem for me. I noticed that I had increasing problems with my stomach. I suffered a lot of constipation, which alternated with rounds of diarrhea. The diarrhea increased with yellowish-green, smelly and slimy stools. I didn't understand what caused this condition and it really became a challenge to tackle this at the end of the important 4th year of study. I could notice that when I got bouts of constipation and spasmodic contractions in my stomach my blood pressure also increased. I didn't need a blood pressure monitor to register this. I sought out the student health service at Blindern, in the hope that they could help solve the problem for me. A young female doctor only focused on the elevated blood pressure. I attempted to argue that blood pressure was only a consequence of the real problem which I was sure was in my gastrointestinal tract, but those arguments did not convince this junior doctor. So, I stayed away from the student health service.

Although I was much bothered, I was able to get through the term and through the exams that had to be taken. Having passed the 4th year exams, I now had the so-called “expedition right”. This gave me the right to independently dispense medicines in a pharmacy. This made me attractive to owners of pharmacies in rural areas who liked to have a pharmacy student with the expedition right to relieve them in the holidays. For my part, this meant that I and my girlfriend, who was also a pharmacy student, accepted a summer job at a pharmacy in southern Norway. We both got jobs at the same pharmacy, and we looked forward to a nice summer with lots of sun.

The days at the pharmacy were fine, and I enjoyed my job and the extended responsibility I now had, compared to the previous summer jobs. One evening when I was out running, I discovered that I had a tick. I did not think much of it and just removed the tick immediately when I got home. Still, I was bothered with my stomach, although it wasn't quite as bad as it had been earlier in the year. The discomfort became more intense when I lay down on my back to sleep at night, and it was hard to fall asleep. Most of the time, the discomfort was almost gone when I woke up the next morning.

A couple of weeks passed. One Sunday night after we had eaten dinner at a restaurant in the city centre, I became increasingly unwell. I felt nauseous and very hot, so I went to bed early. In the middle of the night, I suddenly woke up. I sat up in bed and barely believed what I was experiencing. The whole room spun around as though I was sitting on a carousel at great speed. I lay down in bed and thought to myself “What on earth is happening”. I wakened my girlfriend, and we got out of bed. I was so dizzy that I couldn't stand on my feet without her support. What I experienced was totally surreal and I was contemplating all sorts of serious diagnoses. We called the doctor who was on duty. After a few control questions he decided that this was not something serious. I just had to relax until the morning and contact the local doctor when the surgery opened. I didn't get much sleep the rest of the night. When the doctor's surgery opened, my girlfriend helped me to get to the surgery which was in the same building as the pharmacy. I vomited several times during the morning and was obviously unfit to go to work. The symptoms continued, and I moved like a drunkard for many weeks, even months. This also had its consequence for my employer at the pharmacy, who did not get the solution she had hoped for. After a few days I was referred to the nearby hospital and was admitted for a few days. They wanted to check my cerebrospinal fluid, and therefore had to perform a spinal tap. They also wanted to examine my eyes, and I was dripped with atropine to expand my pupils. After the procedure they were supposed to drip with eye drops to reverse the effect of the atropine, but this procedure failed. With the biggest pupils ever, I was sent out into the most beautiful day, with sunshine from a clear blue sky. A headache began almost immediately, and I quickly had to find the nearest petrol station to buy sunglasses. The hospital did not find anything that could explain my condition. So, I just had to take it easy the rest of the summer and try to regain my balance. As my girlfriend still had a job at the same pharmacy we stayed in town until August.

When we returned to Oslo after the stay in southern Norway, I was given an appointment at the neurological department at Ullevaal Hospital. They performed some tests and did some simple examinations, but they failed to determine the cause of the problem. The conclusion was that I had been subjected to a transient affection of the balance organ, probably caused by a virus.

The fifth and final year of Pharmacy study is the year one writes the thesis for a master’s degree. I improved slowly throughout the autumn, although in many situations I was rocking as though I was on a boat. If I skipped breakfast, I always had a better morning. After I had eaten breakfast, lunch or dinner, the rocking feeling increased. Personally, I was convinced that the whole affair had something to do with my gastrointestinal problem.

The situation improved slowly through this last year of study, and when I finished my studies, I got a job in a pharmaceutical company. The situation remained quite stable, and I had some good years. In 1995, our daughter was born, and two years after that we had a son. My stomach continued to bother me, and in the late 1990 's I got an appointment at another hospital in Oslo for a check-up. The investigations gave no positive results, and the diagnosis "irritable bowel syndrome" was presented with great confidence. I was pleased that classical bowel diseases could not be detected, but at the same time I realized that there had to be quite a considerable lack in knowledge about diseases in the gastrointestinal tract.

In 1997 I got an influenza infection unlike anything I had experienced in my life. Apart from this, the six years we continued to live in the Oslo area were quite stable with regards to my health. In the winter of 1997-98 I was given concession for a pharmacy in another part of Norway, and we decided to move. There followed some challenging and exciting years.

My health was quite stable until the year 2000. Most stable during this period was the same stomach problem. I would occasionally wake up at night, with significant abdominal pain. Most often the condition improved considerably after diarrhea, and I could sleep the rest of the night and go to work the next day. I knew that my maternal family had some rheumatic ailments, including inflammatory bowel diseases. That's why I thought this was something hereditary I just had to live with.

Around the year 2000 a new phenomenon began to develop. From time to time my knees and ankles were very painful and swollen. After a few days they returned to normal, and I assumed that this had to be due to gout. I have lived quite liberally regarding food and drink, and my body weight has gone steadily upwards for years. That's why I figured it was the body saying thank you! No special measures were implemented to counter this, although it was always extremely painful when the attacks came. I, who had previously been an avid trimmer, had now reduced my exercise to an hour of football a week. Of course, I should have acted and reduced my weight, but it was difficult with two small children and a busy life.

In 2001, a new law governing pharmacies was implemented in Norway. From then on it was possible for people and businesses other than pharmacists to own a pharmacy, and it became far easier to establish a new pharmacy. We decided to move to my wife’s hometown and open a new pharmacy at the shopping centre. The pharmacy we left behind was sold to a pharmacy chain, and in the summer of 2001, we moved. We bought a house and started the job of establishing the new pharmacy.

The construction phase for the pharmacy was a busy time. My wife held the concession, and thus would be the general manager. We established it with a small number of skilled pharmacy technicians. I noticed during this period that I could not do much physical exertion before I was very sweaty. This was a new experience. I was more susceptible to common colds, and almost every single time infection followed the same pattern affecting my chest with the result that I got a fever. It was then a rule rather than an exception that I was bedridden. The solution was often to take a short cure with azithromycin antibiotics to get me on my feet again. I never felt like fully recovered after these bouts. I seemed to have a permanent residual chest infection. I remembered what it was like to have good health from earlier times, and it was not like that anymore. The plunder of knee and ankles continued as well, and at times I could be put out for several days before I was good to go again. I was eventually examined in the rheumatic department at Haukeland University Hospital (HUS) in Bergen. They looked for gout and osteoarthritis, but they were never able to determine any specific cause of the problem. A slightly elevated uric acid was detected, but gout was never established as a certain diagnosis.

One day in 2005, I got a phone call from my GP. He told me that an X-ray of my right elbow revealed some changes that gave suspicion of a condition that is known as DISH syndrome; Diffuse Idiopatic Skeletal Hyperostosis ref.1, 2. This is a condition in which excessive bone is formed on the skeleton, and the cause is unknown. I made a note of this but didn't do anything special with regards to this new knowledge. Again, I put this in the context of the rheumatic problems of my mother's family and thought to myself that I just had to live with the challenges that would come.

The problems with the gastrointestinal tract gradually became more pronounced. I continued waking up quite often at night with considerable abdominal pain. I did not understand why these problems came preferentially during nighttime. It was as if the pressure on my back triggered the worst problems. I would get up, go to the bathroom and often have water thin diarrhea. Afterwards, the pain disappeared, and I could go back to sleep. This was the name of the game until the autumn of 2009. I assumed, as mentioned, that I had some sort of undiagnosed bowel disorder but that it just had to live with it. I thought the situation was not alarming, only troublesome.

There are some other experiences that I had in these years that I today think back on with amazement. One is problems I had with acidic regurgitation. These problems were extreme, and I went for long periods on medication that blocked the formation of gastric acid. This helped in part, but it was not always enough. Another problem I had was that I could not drink very cold liquids. When I did there was a reaction in my chest with pain radiating upwards into my head. It was a quite extreme, short-lived headache. In some cases, I also had a slight problem with swallowing.

The years from 2001 until I fell ill in the autumn of 2009 were quite productive for me. I worked for a period as a general manager at a pharmacy other than the one we established. After a while I took a break from pharmacy work and worked at the regional drug information centre (RELIS) at HUS. This was a fun and educational time in a multidisciplinary environment with physicians and pharmacists. The pharmacy we had built at the shopping centre was sold to a chain, and my wife continued as manager under new owners.

After having worked at RELIS for few years I was again tempted by the desire to run my own business and, in 2007, I decided to leave RELIS and start a new pharmacy. The opportunity opened at the newly formed shopping center in Bergen. I invited a former fellow student, from the time in Oslo, to start this pharmacy with me. The pharmacy opened in February 2008, and we ran it together for a year.

I knew there was a huge need for pharmacy in the neighboring municipality to where we lived. This municipality is large in area, but with only about 4000 inhabitants. They had at the time no pharmacy in the entire municipality. I found that the time was right to go ahead and establish a pharmacy in the only shopping centre. After successful negotiations with the owner of the centre we agreed, and I left the pharmacy in the shopping center in the spring of 2009.

Spring and Summer of 2009 were spent drawing and then building the pharmacy. I had a great time through spring and summer working with all the larger and smaller details of such an operation. It was a fun time, and I didn't feel as though I had greater health problems during this period than I had in the previous few years. I was aware that I was a bit overweight, and I struggled to some extent with breathing stops during sleep. I figured this was not serious, and I postponed doing something about the problem. The ailments of nocturnal diarrhea and occasional swelling of the knees and ankles continued as before, but as previously, I assumed that this was a genetic “blessing” that I had to live with. A perception which I held until late 2009.

The pharmacy opened its doors to the public on August 29th, 2009. Many people had gathered to see the mayor cut the ribbon. It was a good feeling to open a pharmacy in a municipality that really needed one. It was a welcome addition to the selection of stores in the shopping centre where it was located. An elderly woman in her 90’s even said that the opening of the pharmacy was the most important event that had taken place in the municipality in her lifetime! Such a statements make you humble, even though the truth of the statement is debatable. In any case, you understand that access to a pharmacy is important for the public.

One problem for me during the autumn was that I had not succeeded in hiring a second pharmacist. According to the Pharmacy law, the pharmacy must have a pharmacist present during the entire opening hours. This meant that I had to be there all the time. This is not a big problem, and most healthy people can endure working a lot when necessary. I was searching for a pharmacist, but the situation did not resolve itself. Apart from myself, I had two experienced pharmacy technicians, who were worth their weight in gold.

This autumn there was a global health challenge in the form of a mutated flu virus, the swine flu. There was massive focus on this in health care and in the media, and there was an invasion of the pharmacies to get the vaccine. However, there was a lack of vaccines and the solution to this was to give a drug, Tamiflu, which would render the flu attack milder. Pharmacists were delegated, by the authorities, the task of deciding which customers should be allowed to buy Tamiflu. It was important that I didn't become ill as I was the only pharmacist. It was therefore a priority that I should be vaccinated. This was done in October. Later, it has struck me that this vaccination was given just before my major health problems presented.

I enjoyed working in the pharmacy and we had good relations with the other shops at the center. The owners of the centre were a big help, and they facilitated the success of the pharmacy. My concern during November was on a completely different level. I developed an increasing problem with sleep, more specifically with breathing during sleep. I experienced that nights became worse and that I stopped breathing as soon as I fell asleep. I could wake up once I fell asleep by a big gasp for air. Also, my dreams changed character and became more and more dominated by nightmares. I often dreamt that I swam from deep water and up to the surface. I was in no doubt that my dreams mirrored a situation where I didn't get enough oxygen. Several months passed with an escalating situation. In theory it is stated that sleeping agents should not be used for sleep apnea because they can aggravate the condition. I experienced an opposite effect. Those nights that were subjectively the best in this period were those nights where I took a small dose of zopiclone, a sleep agent. This substance would come to help me quite a lot over the next years. As a twist of fate, I had previously worked in the pharmaceutical company Rhône-Poulenc Rorer, responsible for the launching of this substance in Norway in 1994. That's why I had a good knowledge of sleep and of hypnotics. The worst nights I experienced were after having had a liberal intake of food and drink, especially unhealthy food. Potato crisps, french fries, chocolate and snacks were all bad. Fruit and vegetables gave me better nights.

When the day at the pharmacy ended, I had a drive of about 15 minutes to a ferry. I was often so tired when I got on the ferry that I bumped my head on the steering wheel. At home I fell asleep before I finished reading the first page of the newspaper. This was totally unlike me. My GP did not have the capacity to help me in the way I now felt that I needed. I therefore turned to a private clinic, Volvat medical centre, with the request to get the best doctor they had. I came to a young and dynamic physician, and together we started a long and difficult journey with the aim of figuring out my health problems. I was, at this point, overweight and had metabolic syndrome with diabetes type II which was so pronounced that I even had sugar in my urine in a single test in November. This is compatible with a usual trait in patients with DISH syndrome.

I was planning to take a private plane pilot certificate, and in March 2009 I passed the theory test for small planes. Because of slightly raised blood pressure, I didn't get the necessary medical certificate that spring. I tried again in November, and this attempt crashed because of the urine sample that revealed diabetes type II. Now my focus was not on taking a flight certificate. It was all about rescuing my health.

There were a few other things that got worse throughout the autumn. Firstly, the gastrointestinal tract problems became bothersome both day and night. During the daytime I had to leave the pharmacy and visit the toilet far more often than I both wanted and really had time for. I noted that what left the body was identical to what I remembered from the start of the stomach problem in 1991. I had no doubt that something had taken residence in my system and now it was seriously on the warpath. Also, I got increasing problems with dizziness once again. Throughout December, the sleep problem, vertigo and stomach problems were all such a character that they became a big problem for me to function at work. I used to be a heavy milk drinker, but to lower my blood glucose I stopped drinking milk at the end of November.

One day, in the beginning of December, I woke up with a whistling sound in my left ear. I was both surprised and somewhat anxious, but the sound stopped within an hour after getting out of bed. My concern was no less a week later when I had the same experience. Like the first time the sound faded away within an hour. Christmas was around the corner, and after this we welcomed a new decade. One morning some days into January the sound came back in my left ear. This time it did not disappear after I got out of bed. I just had to realize it. This was tinnitus, and if it continued it would be chronic. Now the war began!