Party in the Swiss ambassador's residence

When I took this photo, the ambassador asked me if I was doing some form of industrial espionage to steal business from Swiss chocolate manufacturers. I said no.

Last Tuesday I had to go to Tokyo, to the home of the Swiss ambassador to Japan, for a research meeting. Actually they wanted my professor to come, but he is travelling abroad somewhere so he e-mailed them and said that I would go instead. He did cc me on that e-mail, but actually being asked might have been nice too...

Very tiny but very good beef.

The meeting was to start at 9:15 on Tuesday morning, so I would have to leave Sapporo on Monday night to be there in time. Monday was however a Holiday here in Japan (the "Sea day") and I had other plans (a wedding). In the end, I got up at 4:30 am and took the first flight out of Sapporo to Tokyo, which meant I arrived at the ambassador's residence slightly before 10. By then, the presentation that my professor thought was most important was just about finishing (it ended slightly before the scheduled time), so I missed 97% of that.

The desserts were covered in gold. I guess Switzerland just has too much gold and stuff.

There were three more presentations after that, and then a panel discussion. There were two very good presentations that I enjoyed, and there was also some very nice food.

I did however get a very bad cold on Monday evening, so flying back and forth to Tokyo was not great. The super hot summer of Tokyo was not that nice either, but my ears going weird from the flying had me most distracted. Last year I got "sudden deafness" and lost the hearing on one ear. Though most of the hearing came back three weeks later, I would very much prefer not to experience that again (and some hearing never came back). At that time my ear felt weird but did not hurt. After flying, it felt quite similar... I figured it was just the combination of a cold and flying, but it still made me uneasy, haha. I kept checking "do I still hear low frequencies OK?" with ear phones in the plane etc., many times. I am getting paranoid about my ears acting weird. Especially since the chances of not becoming permanently deaf from sudden deafness decrease quickly with time from onset to when you start treatment. If I get that crap again, I want to find out quickly :-)

Sudden deafness, 5 months

I finished all my disgusting medicine, which as it turns out actually tastes worse and worse for each day that you take it, haha. After taking it for ten days, there was no noticeable change in my hearing, so I still cannot pick up on low frequencies on my left ear. It does not affect me in my daily life, but it would of course have been nice if all the hearing had come back. It seems the low frequencies will never come back, but I am still very happy that I can hear what people are saying and most sounds around me.

Sudden deafness, 4.5 months

Back in last week of November last year I lost the hearing on my left ear because a virus killed the nerves in the ear, or at least that is what my doctor thinks is what happened. The symptom is called "sudden deafness". I then got lots of steroids which is the standard treatment, that makes about 50% of the people who get sudden deafness get their hearing back. After a few weeks, most of my hearing came back.

The really low frequencies did not come back but my doctor thought that since the rest of the hearing came back very nicely, this may be caused by a different problem. His theory is that it is caused by the cochlea (the spiral shaped thing in the ear) being too full of liquids. This can happen when you take steroids, and might disappear when you stop taking the steroids.

It has now been quite some time since I quit the steroids and the hearing of low frequencies is still not back so I went to see my doctor again. He gave me a sack (literally; a very heavy sack) of new medicines that help with cochlea problems. I am to take this during 10 days, and then perhaps the rest of my hearing will come back too.

It seems this medicine is horribly disgusting. My doctor told me several times that it is only available as a kind of syrup you drink and that tastes really bad. Since there is no other way (no pharmaceutical company in the world has managed to make a pill or powder out of this medicine) I would just have to take it anyway, he cautioned several times. Then the pharmacist told me more or less the same, several times... You can put it in the refrigerator for awhile to make it a little easier to drink, she said. But basically you just have to grin and bear it.

Of course you take the medicines you are given, right? How bad can this stuff taste?... I guess I will find out soon. I am to take this three times per day for ten days, so if it is really horrible, that will be two weeks when I am not very happy I guess, haha.

Sudden deafness, 11 weeks

The view of the parking lot in front of the house I live in.

It has now been 11 weeks since I got sudden deafness and lost the hearing on my left ear. Almost all the hearing has come back, which is nice. One week ago I took my last dose of steroids, so the side effects from the steroids are now also almost gone (my skin looks close to normal, I am not that hungry anymore, etc.), which is also nice.

I caught a cold two and a half weeks ago, and that cold is still with me. I guess it is largely because of the steroids suppressing my immune system that I have not got over the cold yet, but I hope that now that I am off my medication the cold will go away. In the beginning I also got a lot of blood when I blew my nose, which was probably related to the blood pressure medicines I took together with the steroids, but that has stopped now.

I still cannot hear very low frequency sounds with my left ear (at all, no matter how loud they are). My doctor thinks this might be a side effect of the steroids and that it will go away soon, but it has not gone away yet. Other than the cold and not hearing low frequency sounds, I am doing fine. Ah, I also have some ringing in my left ear (constant ringing, but not so loud) and some weird clicking noises in the same ear from time to time.

Sudden deafness, 9 weeks

Not so much has happened on the sudden deafness side of my life. I hear most sounds again, and I still do not hear low frequencies at all on my left ear (but hopefully the low frequencies will also come back later). This makes my brain think that the face or the ear are paralyzed when you for instance run a comb near the left ear (since the sensory inputs do not match up; you feel something moving but the low frequency so that should accompany that are not present), though to a lesser extent than before. The gradual cut down in steroids progresses and I now only take 5 mg of steroids per day, and in one week from today I will stop completely.

The side effects of the steroids have gone down a bit now that I am not taking such large doses any more. My skin looks nicer, I am less hungry all the time.

Taking all these steroids weakens your immune system so I have been staying away from people to large extents. I have gone to my job, since I rarely meet people there anyway (large room, few coworkers). Apart from that, I have been at home watching movies on my laptop for 9 weeks, which I have grown very tired of. I had managed to stay healthy for 8 weeks through this procedure of boredom, but three days ago I got a cold. It is not that bad, but still a bit annoying.

Six weeks of sudden deafness

Today I went to see my ear specialist again after the New Year holidays. The hearing test showed that my left ear that was almost completely deaf 5 weeks ago now has almost as good hearing as the right ear (which is presumably what the left ear was like before going deaf). There is still a small drop for all frequencies, but not very much. This was good news, of course. The ringing in my left ear is also pretty much completely gone, though the ear still feels a bit weird (it feels as if something is stuck in your ear, though to a much less degree than before).

I still cannot hear low frequencies (very low frequencies) at all, though. This has me a bit worried, since all other frequencies came back gradually and are now fairly fine, but the very low frequencies have not come back at all. I asked about this and my doctor said that when all other frequencies come back more or less at the same pace, but the very low frequencies show now progress at all, it is probably a different problem.

The sudden deafness I got is caused by a virus killing your nerves, and thus you cannot hear anything even though the ear itself is working fine. When the low frequencies are not coming together with the rest, the guess is that it is not the nerves that are the the problem, it is the cochlea. Probably the cochlea is retaining too much water, and when that happens you stop hearing low frequencies. This will possibly/probably go away once I stop taking steroids (a common side effect of steroids is retaining water), so hopefully this will solve everything. If the problem does not go away after the steroids, he told me to come back. There are different medicines for dealing with hearing loss because of the cochlea being too full of water.

So I was told to keep taking 20 mg of prednisolone per day for two more weeks, then 10 mg per day for one week, and finally 5 mg per day for another week. After that, I should be back to normal (hopefully).

So today it was good news. That the hearing was greatly improved for most frequencies I already knew, but it was nice to see that a careful testing also showed that it was almost as good as before. It was also nice to get a reassuring explanation of why the low frequencies have not come back at all.

As for side effects of the drugs I have taken so far, everything is more or less the same as before. I have gained about 1 kg per week (and I am beginning to seriously doubt that all of it is muscle mass, haha) so I am up about 5 kg, and my back looks less than great because of acne. But both of these problems should also go away once I stop taking steroids.

The doctor (and the pharmacist) again told me to be very careful so as not to catch a cold (since you are extra sensitive when on steroids) so I guess I will spend 4 or 5 more weeks being bored at home during all my free time...

Sudden deafness, 4 weeks

It has now been four weeks since I got sudden deafness and my left ear went completely deaf. This means a virus killed the nerves in my left ear and I lost the hearing there. Even if treated, only about half the people who get this fully recover, and quite a few never get any hearing back at all, so this was quite worrying news...

I have been taking large amounts of steroids (40 mg/day for 14 days, 30 mg/day since then) and will keep taking steroids for awhile (the last time I spoke to my doctor the plan was 20 mg/day for another three weeks).

In the beginning, I could hear some very very high frequency sounds very very faintly, and nothing else. My right ear works fine, though, so in quiet environments I have no problems. When there are several sounds, my brain had problems separating sounds or to know if it was actually sounds from different sources or just one sound. That meant that I had problems hearing what people said, everything sounded like one strange sound, not like several separate sounds. It also meant I got really tired quickly, since the brain seemed to have to do a lot of extra work in processing sounds.

I could also not hear where sounds were coming from, so I could sometimes hear that a car was coming towards me, but could not hear if it was coming from the right, left, behind, or whatever. Often, I could also not recognize sounds, since they sounded very strange in the left ear (which heard only the high frequency components of the sound). Car engines and running water sounded pretty much the same to me, and some very strange sounds that I could not understand what it might be turned out to be a wrecking crew tearing down a house, etc.

After two weeks of steroids, the high frequencies were a little improved, but not so much that it helped in any meaningful way. Low frequencies I was completely dead to.

After three weeks, the high frequencies were much improved. This was great. I can now hear more frequencies, and the ear hears them at lower sound volumes too. It is not as good as it used to be, but it helps tremendously. The brain can now usually figure out where sounds are coming from (since almost all sounds also have a high frequency component), so I get much less tired.

The frequencies I can hear also include almost all human speech. This helps a lot and I have a much better chance of hearing what people say even in noisy environments. It is not as good as it used to be, but pretty good.

Still no improvement at all on low frequencies, though. Nothing. I can play base sounds on a volume that shakes the walls and makes my bone structure vibrate, but the left ear still does not react at all. The right ear hears everything, though.

That I got the frequencies for human speech back is the most important, so missing the low frequencies is not all that bad in perspective I guess. That they have not come back at all is a little worrying though. For some people, the improvement is slow (months), so I guess I still have some hope of getting some more hearing back.

Taking large amounts of steroids also has some side effects, and some of them are pretty bad. So far, I have not had any really bad effects that I have noticed. What has happened to me so far is that:

1) I get really hungry and eat way more than I usually do. This means I have gained some weight, about 3 kg. But I am assuming most of it is pure muscle. What else could it be when I am taking steroids, right? haha.

2) My skin is not doing great. Small nicks heal much slower than normal. Parts of my face react much stronger to cold than usual. Sometimes my face feels a bit stiff or strange. Since about a week back, my back has quite a lot of acne too.

3) My social life has died. When taking steroids, the risk of getting colds etc. is very high my doctor and my pharmacist tell me. So they strongly suggest being very careful about things like that, and preferably avoid being around lots of people. So I have mainly stayed at work (no one every talks to me there) and at home (watching endless movies and TV shows). For some people with sudden deafness, it seems to help to have a low salt diet, so I usually cook and eat at home now (so I can avoid salt) instead of eating at the places where my friends work or go to eat.

Other than that, I am doing fine.

After four weeks, nothing that I have noticed myself has changed since the three week mark. The hearing of high frequencies seems to be the same, the hearing of low frequencies is still 0.

I am happy about having quite a lot of the hearing of people speaking back again (though it would be nice if it came back fully, since I still do not hear it as well as I used to) and life is more or less fine. I am a bit worried that the low frequencies have not improved at all, but even if they never come back, I guess life will still be OK.

Sudden deafness, 3 weeks

It has now been a little more than three weeks since one of my ears suddenly went deaf (because apparently a virus killed the nerves in the ear). I have been taking massive amounts of steroids (prednisolone, 40 mg per day for 14 days, then 30 mg per day) since this is the standard treatment. Around 50% of the people that get treated recover their hearing, which is a worryingly low figure...

Now that it has been three weeks, I have some hearing again. I can hear high frequencies to some extent, though not at all as well as on my good ear (or as well as before this happened). I cannot hear low frequencies at all. You could play low frequency sounds loud enough to vibrate my whole body, and my left ear still does not notice anything. Since the high frequencies seem to have come back to a large extent, I am hoping the low frequencies will come back in time too, but the likelihood of them being gone forever is also fairly high, I am told.

Anyway, the frequencies I can pick up include most of "humans talking", which is a great help. Now I can distinguish were high frequency sounds come from, so sounds are also much easier to separate from other sounds. Before, if there was an echo in a room or if several people spoke at once, I had a VERY hard time trying to hear what someone might be saying. It all sounded like one very strange sound (all sounds melted together into one weird sound that the brain could not make sense of) and it was difficult to understand. This is somewhat surprising, since it is not at all difficult to pick up on what people are saying when you listen to a movie where several people are speaking in a mono channel with just one ear or something like that, but when using just one ear to listen to several people speaking around you, it just did not work for my brain. Now, this works better, which is very nice for me. It also makes me less tired.

That the low frequencies are still completely gone is a little worrying, but at least some things came back so I am happy about that. I am still hoping that more will come back later, but even if it stops at the current level, it is not that horrible.

Currently, the sudden deafness has mainly killed my social life. Not that I had that much fun going on before, but after this my doctor and my pharmacist both said: "On steroids you are much more vulnerable to colds etc. so try to be careful about things like that." Currently we both have influenza, the winter cold, norovirus, and gastroenteritis going around in Sapporo. So I have mainly been staying at home (when I am not working). This means I have pretty much checked of all the movies in my "I should see that movie sometime" list since over a week back, and that I am bored and alone most of my time. In four weeks, I have met up with friends a total of 1 time. I figure it is a small sacrifice to make to be bored but safe for a month or two compared to staying deaf forever. Not that being bored in any way guarantees not staying deaf, but almost anything that helps could be worth doing.

Sudden deafness, two week checkup

Yesterday it was two weeks since my doctor told me I had sudden deafness and started pumping me full of steroids. I went back for a two week check-up, and to get more medicines.

First, there was a hearing test. During the hearing test, the nurse asked me no less than three times if I "really had been taking the medicines?"... The result of the hearing test was "maybe a little bit worse, maybe no change".

In my day to day life, I hear, or at least notice, more sounds now than I did last week, so I thought I had had a slight improvement on high frequency sounds. Not enough to actually make out what I am hearing, I just notice that "left ear is hearing something [no idea what]" in situations where I did not notice any sound at all before. So this hearing is not actually any help in any meaningful way, but still feels a little bit encouraging. Possibly it is just the brain being more sensitive, or me not remembering/noticing such sounds before.

Anyway, for low to mid frequencies, I still hear nothing at all. Which I think is the same as before, but maybe I did actually notice some low frequency sounds on extreme volumes last time? I also have some ringing in the ear now (constant, but not that loud), which I did not have the first days.

Apart from being partially deaf making traffic a serious danger to me (I have no idea where sounds come from, currently), another good reason not to go to work by bicycle is the amount of snowfall during days with lots of snow...

The doctor told me that some people get better quickly, some people get better even though there is no improvement early on (and of course some people never get better at all). He also said that there is no other treatment than taking steroids, so in that sense it really does not matter what has happened so far, staying on steroids is the only thing to do. Of course, taking huge amounts of steroids for long periods of time is not good, so if you start getting improvements they cut down the amounts as quickly as they dare. My doctor said that having these shock doses of steroids longer is not good, so he cut the dosage a bit for me and said to come back in three weeks.

So, not good news. But maybe not that bad news either. Having no improvement is worse than getting better of course, but it is apparently not rare to have very little change the first two or three weeks even if you are one of the lucky ones that get your hearing back eventually. And since I seem to pick up a bit more on sounds around me, I am still having some hope that at least some hearing will come back.

The frequencies I can slightly pick up on now seem to include large parts of the frequencies used for human speech, so maybe I can start hearing what people say again even if the hearing of low frequencies never comes back. That would be helpful, since the most annoying parts now is that I have problems hearing what people say to me if there is a lot of sounds in the background. My brain cannot figure out if two sounds come from the same source or not, it seems, so lots of it gets jumbled into one weird sound to me. Trying to follow a conversation in a stairwell with a lot of echoes was also surprisingly (very) difficult. Lots of interesting insights into how the brain can fail, which again would be more interesting (actually very interesting) if you did not have to worry about this stuff being permanent, haha.

Sudden Deafness, part 2

My patient card, sporting something that is almost my name.

Last Friday my boss at the university sent me to the university hospital to get one more doctor to take a look at me. I was not very interested in doing that, since my first doctor seemed competent enough, but my boss said that "this is the Japanese thing to do", and since he is my boss, off I went.

I had to register as a patient at the university hospital since it was the first time I was there (except once when I was interpreting for a Swedish friend). They made up a patient card but did not have space for all the letters in my name, so my card says "Sjobergh, Jona" (instead of "Jonas") in Japanese. The part that describes how to read the name (which is non-trivial to understand from the spelling of Japanese names, though easy for foreign names) uses smaller letters and has my full name, though.

Anyway, I got to meet a doctor who sent me off to get a hearing test after I explained that I probably had "sudden deafness" and described my symptoms, the medication I am taking, etc. The lady who did the hearing test first used sound and later vibrations sent straight into the bone (to see if there is a difference in you hearing sound waves and you hearing other vibrations, for example if your ear drum is busted). At the same time the put lots of noise in the other ear, so you do not react to sounds reaching the other ear by going around or through your head. This is pretty much the same test set up they had in the first hospital I visited.

My right ear is doing fine, normal hearing. My left ear is more or less completely gone, hearing-wise, though physically it is fine. For some frequencies I could feel the thing producing vibrations in the bone jumping around like crazy, but still hear absolutely nothing. Even the nurse seemed a bit surprised the first time, "So, only noise now??". It was also somewhat interesting to judge what level of sound I should have heard had the ear been doing fine, based on the level of noise put into my good ear. At some times, it was loud enough to be painful, and still no response in the other ear.

So, as before, I can hear some high frequencies but only very very weakly. Low frequencies, I cannot hear at all. This, by the way, makes many sounds in daily life sound very weird. I get only a small portion of the complete sound, so it is for instance very difficult to realize that a certain strange sound is actually the sound of pouring water etc. If I was guaranteed that my hearing would come back, these thing would be very interesting, haha. Now, while interesting it is mostly overshadowed by worry that the hearing will not come back.

The doctor later told me that he was also sure that what the first doctor though I have (sudden deafness, a virus having killed the nerves in my left ear) is indeed what I have. He also said that the standard treatment for that is steroids, which is what my first doctor gave me. He had nothing to add or change in the recommendations and thought my first doctor was correct in everything.

That is what I had guessed too, so in some sense it was a bit of a waste of 4500 yen (and money from the insurance company, I guess), but then again since it is a fairly severe affliction, having one more person telling you that what you are doing is what you should be doing is perhaps good.

He also mentioned that many people do not actually get better from the standard treatment, which I already knew. He said that should I be in the unlucky group (which is about 50% or so, apparently) that do not get better, at the university hospital they can also inject steroids straight into your ear. This makes it possible to use very high levels of steroids in the ear but still get less of the side effects of taking steroids normally (now I am taking pills). This apparently is also extremely painful ("like pouring acid into your ear"), but since being deaf forever would be the alternative, that should be fine I guess.

He said that even people who do get some hearing back may not have any apparent change the first two or three weeks, so having no improvement so far is not necessarily a cause for concern. Though it is of course better if you are already getting better.

Sudden deafness

After my influenza was over, I took it easy for a few days (took the subway to work instead of walking etc.) but on Tuesday evening my ear started feeling a bit weird (kind of like how it feels when you are in a plane and the air pressure changes). I figured it was probably an ear infection coming and went home to rest.

On Wednesday morning the ear felt more blocked but did not actually heart. Since I did not have that much to do at work, I stopped by the hospital where I live and had them check my ear. They did not have an ear specialist there, but said that it was probably an ear infection from having a cold/influenza and gave me some medicines for that. They said the ear looked fine, though.

In the evening, the ear had not changed at all, so I went to an ear specialist that was open late. They checked my hearing and said that I had "sudden deafness", which means pretty much that. You wake up one day and one (or both, if you are unlucky) ear is deaf. The reason seems to be a virus killing your nerves in the ear.

If untreated, you will stay deaf forever, they told me and shoved me into another room and pumped me full of steroids intravenously. They also prescribed a lot of steroids for me to take the next weeks and then come back for a check up to see if the steroid dose should be lowered. I also get some other pills.

Apparently, of the people that receive treatment, about half regain their hearing again. Not the best odds... Of the rest, some regain some hearing, some stay completely dead forever.

I thought I had already had my quota of weird medical problems (I had surgery twice already in Japan, and several times back in Sweden too; appendicitis, hernia (which was a funny story in itself), and more), but apparently I am not done yet... Oh well, let's hope I am in the 50% that get better.

Current status is that my left ear has pretty much zero hearing. I can hear some high frequency sounds, but the hearing of those is very very much worse than normal too.

Interesting thing I learned from this (apart from the existence of sudden deafness which I had never heard of before): when your ear stops working your (or at least my) brain reacts by thinking you have something stuck in your ear. The illusion is very convincing. It feels very much like something is stuck your ear, even though the reason is just that you cannot hear low frequency sounds.