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Ménières Disease

I know I’ve been absent some time and not responding to comments – I’ve not been reading much online due to an onslaught of Ménières Disease (which you can read about on wikipedia here). The short version is it makes me so dizzy I can’t blog or read online. So if I missed something important, I’m really sorry!

The long version is, I’ve been having dizzy/vomiting fits sporadically – like one every six months – for two years, and occasional bouts of mild dizziness lasting several days for about 7 or 8 years prior to that, but really extremely infrequently, like maybe two or three over that whole period. The more recent ones make me completely unable to function for the duration, usually starting one evening with the sort of dizziness that feels like extreme tiredness, and then carrying on the next morning with throwing up, inability to move much, getting better towards the evening and gone by the following day. As they only ever last 24 hours we didn’t really think about trying to get a diagnosis until this time, we thought they were isolated incidents rather than an underlying condition.

Separately, I suffered a strong and apparently permanent hearing loss in one ear when Froglet was about 6 months old. At the time the ENT did every test you can think of, including an MRI, and nothing showed up at all. He also kept asking if I suffered from dizziness, and always seemed surprised when I said no – at this point I hadn’t had any at all for a couple of years. The tests did show up that my inner ear on the affected side was completely non-functional (which incidentally is a pretty cool test where they pour water in one ear and then watch as it runs out to see if it makes you feel dizzy. It should! and it didn’t for me, on that side at least.) So we went to him and tried various things for a whole year and in the end he apologised and said there was nothing more he could do but that he would keep an eye out and if anything new came up he would let us know.

Fast forward 3 years and I get the first bad dizzy spell, right after a long drive and while pregnant. We put it down to the pregnancy, mainly. Fast forward another two years and it’s now. I’m on my third dizzy bout this year, so the rate is increasing. Several times it has come on on a weekend so we’ve seen the on-call doctor rather than our own, and he has injected medication to control the vomiting and nausea, but this time it arrived on Monday two weeks ago and we were able to see my doctor and ask him if this was likely to keep happening/get worse/be treatable… and he discussed it with the ENT and got my original audiograms… and so we now have a diagnosis of Ménières disease, although in fact Ménières is idiopathic which means it’s not reeeeally a full diagnosis in itself, more a recognition of the fact that I have this recurring set of symptoms whose cause is as yet undetermined – if the cause is ever determined I will then cease to have Ménières and will have whatever that cause is instead, but in many cases no cause is ever ascertained, because the inner ear, like much that goes on inside our skulls, is still very much a mystery! (My apologies to anyone medical reading this. I know that’s a gross over-simplification!)

So I now have an appointment with the ENT next Wednesday to do a new audiogram, which they expect will show a further decline in my hearing on that side, and some other tests as well.

And the last thing to say is that although the properly incapacitating dizziness only lasted 48 hours this time, I have been dizzy in the mild-to-moderate range for the last two weeks and am only just getting over it now, and extended computer time, I have just discovered, makes it worse, so that’s all from me for now! 🙂

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MRI results

Well, I convinced the doctor to give me a summary of the result today. Unfortunately he did it quietly and in German so I didn’t catch all the details – couldn’t hear part, couldn’t understand part – but the basic result is no tumour. 🙂

(And this is good because I read my ENT’s notes beforehand and he was specifically asking them to look for a brain tumour)

But he said something about my nose which I didn’t catch. So I guess we’ll find out about that at the end of August when I have my next appointment. Hopefully it’s not something that is going to cause problems duirng flights next week.

So to answer profvector‘s question elsewhere, yes life looks good from here. 🙂

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Well, it was a very long trip to the doctor yesterday – over an hour. Good job I had the Engineer there to look after baby. (He is now baby’s favourite person again because he played with him non-stop for all that time)

I’ll try to give you the brief version. My hearing has got worse again – worse than it was in the first test too. It was -40, then -30, now -50. 😦 Still perfect in my left ear though. The doctor was surprised and somewhat concerned. He did me loads of balance tests (walking with my eyes shut) and a dizziness test which involves pouring water in your ear for 30 seconds with your eyes closed and then monitoring your eye movement to see how dizzy you are. It’s quite fun really.

right ear: literally no dizziness at all (with both hot or cold water)
left ear: extreme dizziness with hot, medium dizziness with cold (= normal reaction!)

So there’s something wrong not only with my hearing but also my balance centre (both in the right ear) meaning it’s probably a nerve problem. But he can’t see anything at all, infection or otherwise, so I have to go for an X-ray in Lucerne on Friday. Then we go on holiday, then I have another appointment after we get back, on the 28th, to discuss the results.

I’m back on the meds he gave me in the first month (when it got better), which appear to be corticosteroids and are for treating infection even though he can’t see any, but they clearly worked in the first month. Four days of that and then the X-ray.

Question for Sarah or BU (or anyone else who knows): is there any chance my wisdom teeth are involved in this? I had them taken out on the left side but they’re still in on the side which is having problems. So that’s my current theory/hope – but dental treatment is expensive here and not covered by insurance. Blegh.

ETA: Things I’m thankful for today:
Banana bread!
The Engineer being able to get off work yesterday to look after Froglet
Baby cows (They are so cute when they flap their ears! I may have said this last year too).

Oh also:
is my baby sister’s blog where she posts her artwork (mostly photo stuff right now it seems), in case any one wants a look. In the top photo on page 50 you can see the rest of my family (barring my sister in Romania), but those early photos aren’t very good, the more recent ones are the “proper” arty ones, I think she may just have done a course on using Photoshop. The girl who appears in a lot of the most recent ones is my second youngest sister, the one who stayed with me recently and is Froglet’s favourite. I’m sure none of you are very interested but just in case. 🙂

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Hearing loss

Since getting back from the doctor I’ve been doing some reading up on hearing loss. It appears that sudden loss of hearing in one (or both) ears should be considered a medical emergency. If this happens to you, get to the doctor, even if it’s during a cold. By the time your cold gets better and you realise that the hearing isn’t mending, it may be too late to get it treated.

for more info, see:

So I didn’t know that, obviously… and it’s been two months. The doctor says the inside of my ear is perfectly clean – there was me hoping it was a build-up of wax and he’d syringe it and I’d get to see a large lump of wax, cos I thought that sounded like fun when it happened to The Engineer’s flatmate at university!
Anyway so that’s not it. He says he can’t see any infection either (not even sinusitis, which is odd). But he did a hearing test and there’s clearly a huge difference from my left ear, which is basically perfect.

So he’s taken some blood for testing (for what???) and given me cortisone tablets to take every day for the next 20 days along with some other thing to improve blood circulation. And I have another appointment in two weeks.

Having done all this reading-up, I have to say I’m not feeling very encouraged. It seems to reckon that the longer you leave these things the less likely it is that you’ll be able to recover even part of your hearing. And all the other causes it lists are things like AIDS, or a dead nerve… things you can’t do anything about. I don’t want to be half-deaf!!!

And if I am, I can kiss interpreting good-bye for good. Kind of already had but it was nice to think I might one day go back to it, when the children grow up. Besides, I was hoping to start doing it in church again soon. 😦

So there’s nothing I can do but take the meds and trust God. Aargh, patience is not something I was planning on learning this year…

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