@Sue Thanks for the very good suggestion. You happened to ping me at a time I didn't hear it. That is almost spooky! :)

@ElendilTheTall I am logging off for at least a day, maybe a few days. It all kind of comes down to nerves. So, don't expect me except briefly from my phone (maybe) if swipe is very quick to learn (it's downloading now). I'll ping you when I am back home.

(I'm downloading Swiftkey too)

I have a few more hours, my friend's first flight was delayed making him miss his connection. Maybe I'll catch you before I leave.

@derobert Thor? I'm afraid I didn't get the reference.

And hello everyone, I'm back

Hi @rumtscho!

Did you have a great vacation?

@Jolenealaska yes, I did. It is a charming place.

Where?

The river is called Allier

in France?

the village is called Alleyras. You need a really detailed map to find it, it's not shown on most

Yes, in France, 200 km south of Lyon

We were alone on the whole camping site except for two anglers, one of whom seemed to be the camping manager's boyfriend

it was a nice group too. I was away for the first time with my kayak club, except once before for 2 days, but with less people back then

this time we were 11

I was the only one below 45

I felt quite well accepted in their in-group despite them sharing history for 20+ years

Nice! Camping is one of my all-time favorite activities.

I also kayaked a grade 2-3 river for the first time

only capsized once. That counts as a big victory, because I only managed to escape 2/3 of the stones in my way :)

Wow...3 is pretty rough!

I earned a very cool pair of very ripped (stylish at the time) jeans that way.

there was also a grade 4 stretch, but only two guys paddled it

@Jolenealaska you earned jeans by driving a kayak?

was it a bet?

It was a canoe (kum ba ya type), but yeah. I was intact when the day was over, but the jeans were shredded.

I wore them for years afterwards.

They were sooo cool!

Here's a funny piece of trivia, most maps of Alaska have all towns with a population of over 3.

@Jolenealaska Haha. I'm afraid France's map would be an unreadable mass of letters printed over each other in that case. Of course, you have the opposite problem.

We might be tied with Greenland for population density...but I don't know.

@Jolenealaska I'm afraid I also have bad news... maybe not terrible news yet, I don't know, but I'm pessimistic. No idea how to bring it into the flow of conversation.

I'm partially deaf now.

Just say it.

Oh!

Maybe due to the cold water??

How long have you noticed it?

I didn't go to a doctor yet, because it's complicated to do so in France (I don't speak French, and the bureaucracy is terrible) and because I looked at the possible diagnoses and therapies and there didn't seem to be a reason to go there quickly

it isn't the cold water, happened before that

You're right that it probably isn't time critical, but it is hugely concerning.

on the morning when we drove out, I felt like I had a pressure problem in the left ear. You know the feeling when you are sitting in a lift which gets up in attitude too quickly? It was that feeling

and a few hours later, in the car, I realized that I am hearing my own voice doubled, as if it has an echo

later the feeling transitioned to being like having a wad of cotton stuffed into my ear

In the hopefully unlikely event that steroids are recommended, please talk to me first.

since then, the feeling is changing - sometimes weak tinnitus, sometimes the echo, sometimes nothing

How long has it been since your last MRI?

Is it significantly worse on one side than the other?

but the one thing that is common is: if I leave that ear open, and shut the other one with my finger, I hear sounds weakly, and with many frequencies missing. Like a radio with bad reception

Luckily, only one side is affected

Well, that is both lucky and scary.

so I can converse quite normally

after looking it up and also talking with a nurse in our group, it seems to be Sudden idiopathic sensorineural hearing loss

which simply means that something in my aural perception is fucked up and nobody will be able to tell why or do something about it

it either goes away within the next 60 to 90 days, or stays forever

but they do try to do stuff about it

And the nurse knew of your family medical history?

funnily enough, steroids are the most promising therapy

@Jolenealaska no, she didn't

Don't rush into the steroids.

No matter what the diagnosis.

Have I ever told you of the 15% issue?

my last MRI was 2 years ago. I was also given two MS-specific tests, one with measuring nerve conduction with electrodes on my head, I forget the other one

both tests were negative

@Jolenealaska it is what got your hips?

The steroid course for the hearing loss wouldn't be permanent, it is several injections a longish time apart

but I don't think I'm going to get them, because it's more popular in the US, where the predominant theory is that the hearing loss is caused by viral infection of the nerve system which inflames the hearing nerve

Yes, and 15% of all patients who have had multiple (more than 5) IV steroid treatment develop the problem.

in Germany and Scandinavia, the predominant theory is that the hearing hair cells are not getting enough blood, so they are giving blood thinners

Of course I didn't know that until I was wheelchair bound and in unconscionable pain.

I read a metastudy on the treatments. They couldn't conclude that any is better than placebo

Faster, yes, but I'm not seeing "better".

but the diagnosis is rather rare, so they only had 2 steroid vs placebo studies, one of which found a positive effect and one didn't

@Jolenealaska what is faster?

With steroids.

@Jolenealaska sorry, I'm still missing the thread of the conversation. What is faster with steroids? Your improvement?

I went blind in one eye very suddenly. Steroids brought my vision back quickly, but at a huge cost.

@Jolenealaska I see :(

So just be extremely wary.

I'll research it thoroughly if it is offered to me at all. Maybe it's a lower-dose therapy than what you had, or more localized

I think I read somewhere that one of the methods is to inject it directly into the ear

My therapy was Solu-medrol, 1 gram per day for 3 days.

injected?

Repeated 4 or 5 times over the next 2 years. Yes, IV infusion.

methylprednisolone sodium succinate

I am reading about it right now

If I could choose today to still be blind in that eye but have my own hips, it would be a no-brainer.

@Jolenealaska thank you for sharing this information. It is quite important to me.

You know, on the first day, I was very disturbed

It should be!

but afterwards, I managed to enjoy the vacation

Contact a neurologist, don't mess around with a middle-man.

part of it is of course that the diagnosis is not yet certain

and even if it is this one, there is still a chance that it will go away on its own

That's why god created neurologists.

but part of it is also that I seem to be able to live with it

@Jolenealaska :)

I'm sure it would have been much worse if I had a constant reminder that something is wrong. Some people with hearing loss have a big trouble communicating.

You wouldn't.

But it seems that my one good ear is sufficient for everyday purposes. And there isn't much to constantly remind me of the problem the way pain would do. Even the tinnitus is forgettable, when it occurs at all.

With your knack for languages, you would be fluent in sign language in no time. Since you have used verbal language for forever you would be understood, no problem.

sign language will be a big predicament simply because most people I want to communicate with in real life don't know it

and wouldn't be motivated enough to learn it just for me

@Jefromi Apparently I can! I just tried it with a new question. For some reason, I thought I could only suggest title-only or at least a six-character change in the body. Anyway, I'm noticing an interesting discussion here about serious medical problems-some of which I and friends have had, so that's more important than the edit. I'm going to read this & see if I can add anything constructive...

True, but interpreters are everywhere.

it's not that I won't learn it - I've even thought of learning it before, out of interest - but that it's not widely used

@Jolenealaska I cannot very well sit at the christmas party of the kayak club and have fun if I need an interpreter while everybody is making conversation around me

or even worse, I couldn't work as a requirements engineer, moderating tense meetings or unobtrusively observing people's work process if I can't hear conversations

I took lessons in 7th grade. I learned the alphabet within a few days. I was fluent within a few months. Between that and carrying around a tablet, communication doesn't have to be a hurdle.

but I'm very lucky that the current hearing loss is partial, and I don't think it will worsen - it has not worsened since it started, and also there is no suggestion in the literature that it goes worse

Eavesdropping would be somewhat more difficult :)

@Jolenealaska sure, I would still be able to tell people stuff. But I'd be cut off from much of the stuff people around me tell each other, and there would be a barrier for them to tell it to me.

Deafness is a culture as much as a disability.

it's not completely impossible. One of the important professors in our field is mostly deaf. He wears a hearing aid and reads lips, and others are accomodating at conferences, but it's still obvious that it's a problem for him.

@Jolenealaska I can imagine.

And about that MRI scan: is it a common MS symptom? I don't know that much about it.

I lived right by a huge school for the deaf in Maryland.

A lot of my clients were deaf.

@Jolenealaska in your time as a dog trainer, right?

Yep.

Among other things, I trained dogs to alert their owners to sounds.

I see. I think it's not that much of a problem nowadays

people with complete hearing loss get cochlear implants

I even know a baby who got one

There is no such thing as "common" in MS :) But, it is certainly a concern.

If (heaven forbid) it is an MS thing, a cochlear wouldn't help.

I last saw him when he was 16 months or thereabouts. The mother was a nerve wrack, thinking that deafness is going to ruin his life. But he was a happy little fish.

His dad joked that he's his cyborg baby, because he needs two microphones magnetically attached to his skin to hear.

That would be like glasses for optic nerve damage.

@Jolenealaska yes, I guess you are right. Of course, the hair cells are a kind of nerve cell as well, but it's unlikely that they would be the only ones damaged if it's MS.

That's why I am pushing you to be fast about it.

@Jolenealaska Oh, I'm going to be fast anyway. I'm going to the doctor tomorrow morning.

Good.

I actually considered just taking the train home on the first day of my vacation

Probably not worth all that!

:)

but it didn't seem necessary after what I read

it really fits all the descriptions of idiopathic hearing loss

Do any of you mind that I'm lurking here? This is very personal stuff and you guys are friends. I have Meniere's (deafness, vertigo, etc.) and am interested in your conversation. I won't interrupt, though.

Tomorrow is fine!

It is always OK to lurk.

:)

@Sue Thank you for speaking up and reminding us, because we sometimes forget that the room is public. I'm OK with you staying.

We could be having this conversation over email if privacy was a huge concern.

you can also take part instead of simply lurking, if you prefer

A neat thing about this room is that "true" lurking isn't possible. The closest you can do is what I often do, which is to never log out!

Thanks all. It makes me sad that you guys are sick, and reminds me that there are real people behind all the awesome contribution you make to the community!

There are a whole lot worse things than MS.

@Jolenealaska by the way, I just read the patient information on methylprednisolone. You are right, there is no mention of the possible bone problems on the side effect sheet, despite it listing a lot of information. This is basically worse than having no information at all! I would have trusted such an information sheet to be complete and not leave out a serious side effect which affects 15% of patients!

I'm sorry about your ear, Rummy.

That was my reaction.

I hope it will get better!

@Jolenealaska Yup. I also read a lot of transcripts without coming in unless I have something to say. I actually popped in first, which is unusual for me.

It blew me away!

My left ear is deaf 100%.

@Cerberus thanks. And hi.

@Cerberus Oh wow. I never knew that. Do you know the reason?

It must be scary to have hearing loss all of a sudden!

Well! See? Who knew?

@rumtscho I had the mumps when I was 3.

Jeez. That makes me think of "Marvelous Measles"

@Cerberus Mine too. And most of my right. I've heard that can happen with mumps.

@rumtscho Just caught up on chat, really sorry to hear all that!

@Cerberus I see. There goes my co-vacationers' argument of "don't worry, it won't be permanent, you're too young for this to happen to you".

The nurse suggested the theory that it might be simply a piece of earwax lodged deep in the ear

and they tried to tell me that it's probably that. I get it that they are trying to cheer me up. And I'd be overjoyed if it turns out to be just that.

@Jolenealaska Do you have ms?

@rumtscho I don't think that most doctors are aware of the 15% thing, although that steroids cause AVN is known to all Drs.

And the way you described it did definitely make me hope it was some kind of temporary blockage or something. I know one time after flying with a cold, the pressure didn't equalize right in my ear and it was muted to the point that I mostly only heard out of the other ear for a couple days. So... maybe if you're lucky something like that?

@Sue Yes. Diagnosed for 15 years.

But I'm also accustomed to reading medical texts, and mine seems to be a textbook case of the sensorineural thing. I can't imagine that a piece of earwax will cause symptoms which swing between tinnitus, echoes and simple hearing loss.

@Sue That sucks! My right ear is fine. I'm normally OK, except when there is a lot of noise and I can't position my good ear towards the person I'm talking to.

How did that happen for you?

@rumtscho Oh, no, you can't have the mumps, right?

It is a children's disease.

You're both too old and too young to go deaf.

@Jefromi An eustachian blockage seems more likely, the way it started out with the unequlized pressure feeling (although this is also a common way ISSHL starts). I still haven't given up the hope that it turns out to be something else.

Besides, your ears are not connected in a way that would make the same thing happen to both.

@Jolenealaska I'm so sorry. You have such a great attitude though, as does my other friend with ms.

Guys, I have to go AFK for a while, but I'll be back soon.

@Cerberus I think I still can catch the mumps, unless I have a vaccination against it. I have sadly forgotten exactly what vaccinations I got.

@Jolenealaska Bye. Take care of:)

@Jefromi Yeah I have seen that happen to many people.

@rumtscho In the US you usually get measles mumps and rubella vaccines all together - not there?

@Jolenealaska Later!

But this would be a very unusual case of the mumps. No fever, no swollen lymph nodes, no other symptoms than funny hearing.

@rumtscho Yes, but chances are I believe negligible because of herd immunity?

@rumtscho Would you mind filling me in a little? Where do you live?

@Jefromi I know my rubella vaccination was borked and I didn't get it, but I think it wasn't a combined one.

All children are no doubt vaccinated in Germany.

@Sue In Germany.

I think you can rule out mumps: herd immunity + no symptoms.

Besides, hearing loss due to mumps is extremely rare.

I was born in Bulgaria, and we had a good child vaccination program. But I changed schools the year I would have gotten many vaccinations, and was off the usual time slots

I think it was 1 in a million or so.

@Cerberus I know-it gets exhausting! I'm sorry you're going through that. Is it permanent?

Vaccination against mumps because standard for babies one year after I was born, I believe, so I never got it.

@Sue Yes, I've had it for 29 years, I don't know any better, it's fine.

You?

@rumtscho I was curious because the approach to your type of loss is a bit different in the states.

they were still going to give me all vaccines, but then suddenly, when I was waiting in line to get my chickenpox vaccine, the nurse came out to announce that the pupil who got in before me has the chicken pox and they will close the nurse room that day for sterilization. I had to wait until getting the vaccine many weeks later because I had probable contact, and somehow the school year ended before I got the rubella vaccine.

Oh, noes.

I had chicken pox too as a child.

@Sue Interesting. What would it be there?

@Cerberus I got it from Ménière's disease, which I was born with. It took about 30 years to lose the hearing. Then when I hit 50, almost 10 years ago, it went bi-lateral and the loss began in the other ear.

I don't know if I'm displaying a culturally-normal approach at all, I don't personally know people who have had to deal with deafness. That one child was an acquaintance, but I only saw him twice, and probably won't see him again (he's the son of a good friend of my ex)

@Sue Oh no, this sounds really hard

it's not just that your symptoms (bi-lateral) are so much worse than my partial loss, I also feel that a degenerative disease is the hardest kind to have

guys like you or Jolene with her MS are heroes for living with it and not sinking into despair

@rumtscho I admit that it sucks, but I'd rather be deaf than blind! And Jolene's attitude is amazing!

@Sue That sucks. Do hearing aids help?

There was this girl at university who had gone deaf all of a sudden.

At least it happened very fast.

At the time, cochlear implants weren't good enough for hearing speech.

After 8 years, they had improved enough, and she got implants.

@Cerberus that's terrible. It was permanent for her, then?

Then she could talk to people again, with a microphone.

@rumtscho Yes, apparently, but at least the work-around became available.

Our bodies suck.

But at least we aren't beetles, huh?

@Cerberus I have one in my hearing ear, and it has helped a lot, but isn't perfect. Have you ever played that game where somebody whispers something in your ear and you tell it to the next person, but it gets more and more funny as the misunderstandings go on? My life is like that. You'd be amazed at the difference between what people say & what I think they said :))

@Sue sure, blindness would be worse for me too. But I'm still curious, how would an American have reacted in my place? Because above, you said that my approach is so different.

Hello all. :)

@rumtscho I'm very concerned for you. It's so important to express your fears and not feel like you're not handling it right. Although some people think deafness is a culture, it's a very individual thing.

@Sue Thank you for your concern and for sharing your experience. It is good to know that there is support out there, even when you're on the other side of the world :)

In the U.S., those small hairs (cilia) are blamed, but I've never heard of blood transfusions. Has anyone talked to you about lymphatic fluid?

@Sue Oh haha.

@Sue I haven't talked to a doctor yet, just privately to a nurse who is not specialized in otolaryngology. I think she is an ER nurse.

@Cindy Hi! I'm new here so I don't know you :))

The Germans blame the cilia too, saying that they don't get enough blood. But when I read articles from The Lancet and some kind of JAMA journal online, they said that this is probably a myth.

@Sue Hello and welcome!

Hmmm.

I also had perfect blood pressure (somebody had brought a portable BP measurement tool to the camping!) and no symptoms of thick blood or dehydration. My fingertips and lips are well colored, I was moving a lot and drinking plenty of water.

If it's a blocked e. tube, can that easily be unblocked by a doctor?

@rumtscho I refuse to sound like a snob, which means I probably do! but I've been at this a lot of years. My doctor is the head of otolaryngology at Harvard med.

Haha, that is a nice example of preterition, but you are right.

@Sue I'm sure there are many doctors here who support the "no blood at the cilia" hypothesis too. The nurse said that at her hospital, patients with ISSHL are normally given infusions which thin the blood.

The hardest part is what you're going through right now-wondering why and not knowing where to turn, and he understands that.

@Sue you are right, somehow humans we are rigged in such a way that even certain bad news are better than uncertainty

I'll bet you understand that too, @Cerberus.

I have never had the experience, because I didn't know what was happened when I was 3.

@Cerberus That makes sense.

@Cerberus are you doing something to manage it, or is your hearing in the right ear sufficient to compensate?

My hearing is perfectly fine, except in noisy environments where I can't position myself, such as when I'm sitting at a table in a noisy bar talking to someone on my left.

But there is nothing I can do about that except ignore this person.

I make sure I have noöne sitting on my left whenever possible.

@Cerberus I know the feeling after only 6 days living with the problem :(

Oh, and I can't hear from which direction cars are coming, but that is not important.

@Cerberus Same here! I also can't hear people coming up from behind me!

@rumtscho I was for all practical purposes diagnosed with MS (my MRI was very diagnostic, even if all of the requirements for actual diagnosis hadn't been met) within a week of my first overtly neurological symptom.

@rumtscho It sucks, but I believe one gets used to that eventually. So even if this should not be solved, your experience of it will improve.

I thought that a silver lining might be that at least doctors would believe me if I were diagnosed with something weird.

In daily life, I hardly ever suffer at all, except in the situation I mentioned.

@Jolenealaska This is very different from most cases I've heard of. I'm sure it was still very hard for you to learn about it, it's a very tough diagnosis.

@Sue Oh, no, I probably don't notice that either, but...I don't know any better, and I don't find that it bother me. Right?

It was tough, but it wasn't as life changing as you might think.

what was your actual first symptom? I'm told many people mistake their first episode for a bad flu.

@rumtscho That's what I mean about you being at the scariest part. So what kind of doctor are you seeing tomorrow? I'm with Jolene 100% (oh, she's back!) that you must go...

@Jolenealaska Good. You sure sounds like a happy, normal person hehe.

@Sue I'll go to the family physician and I expect him to give me a redirection to the specialist he thinks best

My first symptom that led to the MRI was right side blindness.

@rumtscho When will you be home?

@rumtscho That's why I threw the name of my doctor at you-a good person is very important.

there is a specialized head clinic at the university hospital here, this would be a possibility if it's hard to decide between different types of doctor

When the Dr told me (I had no idea) that it ran in families, I kind of knew.

but I don't think he will refer me there as the first thing, actually. He hasn't refered me to the university clinic as a first choice before, and it's not a good experience, they are terribly busy there

I have already finished most of a chapter concerning doctors.

so I am likely to have to go to either a neurologist or to an otolaryngologist (what's the correct English word for that?) in a private practice or a smaller hospital.

Meniere's isn't curable, but what you have may be episodic, which is what I want for you!

My most important advice is to never forget that they work for you...

not the other way around.

@Jolenealaska good point. I've been at bad doctors before

funny enough, the worst also gave me a steroid - luckily, a topical one

Yes. I have a doozy of a bad Dr story.

What's so bad about steroids?

And in contrast, a few great ones.

@rumtscho Wishing the best. Let us know what you find out.

Steroids killed my hips.

it was a skin disease doctor who didn't give me a diagnosis but gave me a tiny tub of unlabeled unguent

@Jolenealaska I couldn't have put that better myself! I'm shy, and don't like to be pushy, but it's your body.

@Jolenealaska OK that counts!

That was 6 years of agony I could have done without.

I think I have a nose spray that contains steroids.

Is that risky?

years later, it turned out that what I have is psoriasis, and the unguent was a mild topical steroid which reduces the symptoms while it is taken but increases the psoriatic area as soon as it is stopped. This is what happened to me too, luckily on a very small scale.

Nose spray is probably OK! :)

@Cerberus probably not, they tend to get very bad once you start injecting.

also, don't take them if you have psoriasis (see above).

@rumtscho God, that is stupid!

Since developing allergies at 47 (who does that??), I have been using nose spray with steroids. :)

@Jolenealaska I've heard of that-so sorry for you.

@rumtscho Noted!

@Jolenealaska Yay, high five!

@Cerberus the bad news is, if you need them as an injection, you might not have a choice. They are used for some very serious diagnoses.

Right, a choice between evils...

The doctor who mentioned my history of steroids before anything else, called me a liar. The pain was obviously in my head or a lie.

She referred me to a shrink.

What??

@rumtscho Jolene-what's your thought here-an OTC or neuro for him? I've seen both. And I used to have an oto-neurologist, if you can find one of those.

Yep.

Oh, in that way.

Wait, you mean the doctor to whom you mentioned your history of steroids?

That's the subject of my only question so far on Writer's.

No.

So he mentioned the steroids but still called you a liar.

So it is not well known that steroid injections can cause such pain?

She said it in the letter to my regular Doctor, who referred me to the bad doctor because she is a specialist in pain.

Annoying.

(the bad doctor)

I have had 2 steroid injections some years back. I was in misery. My eyes were swollen almost shut and the skin around them was extremely red and irritated. After two doctors gave me a diagnosis of dermatitis and I got no relief I went to a dermatologist who gave me the injections. The relief was tremendous. Shortly afterward I learned that what I have was allergic conjunctivitis. Now if it starts I simply use eye drops and stop it.

@Jolenealaska That's the worst. I grew up being told I was making up the noises in my head (tinnitus) and falling down (from the vertigo) was a way of trying to get attention!

Hold on a bit, I'll show you the letter.

Well, in a sense, all pain is in your head. But it doesn't mean that it has to be of the shrink-healable type.

I don't know if I've posted this link here before. One of my favorite TED videos.

@rumtscho Are you having vertigo?

@Cindy Glad to hear that you can now heal it and that it was discovered before the steroids got you in trouble.

@Sue no, not at all. It's one of the silver linings I'm firmly holding onto

I was able to drive whitewater kayak in the days since it happened, and I drove pretty well (considering that I'm a beginner) so I can confidently say that I don't have any vestibular symptoms, not even tiny ones - I'd have noticed even small problems with my balance.

@rumtscho Good. I'm no doc, but in my experience, that might mean it's more of a middle-ear issue. I don't know if that's worse or better, but might help a diagnosis. Headaches?