meniere

Author Topic: Definitely maybe  (Read 2091 times)

Offline milady

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Definitely maybe
« on: Nov 16 2017, 06:55 PM »
Off to see 'the man' this afternoon, armed with my diary of events and a rough estimate of how often and for how long I have been inconvenienced by vertigo - not that often, 20 days out of 132 since the last appointment, and only 4 of those days when it lasted more than an hour. Of course appointments were running late, but the wait was enlivened by the fire alarm going off so we all had to toddle out and loiter until they decided it was a false alarm. Anyway, we ran through the situation (again) and we are still at the point of 'definitely something, maybe Meneiere's. Keep on doing what you're doing and come back in 3 months. No you can't have your driving licence back yet...'

Ah well, nil carborundum and all that.

Offline Silver Fox

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Re: Definitely maybe
« Reply #1 on: Nov 17 2017, 07:29 PM »
It took nearly two years before my Menieres was diagnosed. Medication made no difference. I've had one steroid injection so far and my second booked in for the end of this month. Fingers crossed it works this time round.

Ed

Offline The Wobbler

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Re: Definitely maybe
« Reply #2 on: Nov 17 2017, 10:48 PM »
Has he not offered a caloric test?  That, alongside a hearing test and an MRI were the first procedures offered to me before diagnosis, the latter to rule out anything more sinister.

When the dx was delivered it was caveated as “work in progress”.  That seemed a bit unsatisfactory at the time, but looking back I can see why he said it.

I was anxious to have a label and a cure.  I got the label.  The cure is still “work in progress”....

Offline milady

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Re: Definitely maybe
« Reply #3 on: Nov 18 2017, 07:23 PM »
No one has mentioned the caloric test yet; that may be a pleasure yet to come. ;)

I had an MRI in March which showed nothing abnormal, and I had a hearing test in April, and another this time to see if there was any change (there wasn't). I already have severe hearing loss. As far as I'm aware there is no fluctuation in what I can or can't hear or any particular increase in tinnitus relating to the vertigo, it just turns up when it feels like it.

I am taking Betahistine which may be having some effect as in the last few months the vertigo has mostly been short-lived - the worst is over in a few minutes and any unsteadiness fades fairly quickly. I saw a balance therapist last month and am doing the suggested exercises on the grounds they won't do any harm.

I think for the moment I'm on a 'wait and see' plan. This may be atypical MD or something completely different. It would just be nice to know so that I could label it and deal with it and get on with the more interesting things in life. Of course nothing is ever that simple...

Offline MissCheeva

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Re: Definitely maybe
« Reply #4 on: Nov 20 2017, 04:53 PM »
My consultant told me it was Meniere's from my first meeting with him.  He did the MRI to be sure, but that was that.  I wonder why he was so quick to diagnose me from the start.  I have to say he has been right at every turn I have taken so I do trust him.
 
I am not saying your consultants are wrong to take their time.  I guess that as there is no definitive way to diagnose it they are just making sure they have eliminated all the possibilities before sticking a label on it.  I hope you get a diagnosis one way or another soon, I understand how frustrating that can be.

MissCheeva

Offline Martin

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Re: Definitely maybe
« Reply #5 on: Nov 20 2017, 06:43 PM »
I had a long and winding road to diagnosis, which took about 4 years. I had acute labyrinthitis, then was symptom-free for 18 months, then started with the vertigo attacks. First they thought it was stress - the company I worked for at the time was going bust, and we were all stressed as hell, and after CBT my symptoms remitted for a year, which I now think was a complete coincidence. Symptoms came back with a vengeance when I wasn't stressed, and I then had a battery of MRI, CT, hearing tests, caloric tests etc. Caloric test induced projectile vomiting, at which the audiologist said "you clearly have a very disturbed sense of balance" - "no s**t!", I replied, and hurled again. Long story short, I was eventually diagnosed with MD when they couldn't find anything else wrong with me. It was, actually, admirably thorough.

Offline milady

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Re: Definitely maybe
« Reply #6 on: Nov 20 2017, 07:00 PM »
Thanks for the encouraging noises, people. Nice to know I'm not the only one who is waiting/has waited for a diagnosis. I don't mind waiting but I'd like to think we'll progress to a decision, or at least lean more to definitely than maybe what-ever-it-is relatively soon. Right now I'm pretending I haven't noticed it's been quiet for 3 weeks - don't want the vertigo to think I'm missing it!

Offline milady

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Re: Definitely maybe
« Reply #7 on: Feb 15 2018, 07:17 PM »
Another 3 months roll by and it's back to see 'the man'. Well, not quite, this time it's one of his oppos. So, a run through things - lots of little 'moments', anything from 30secs to 30 mins, but mainly short-lived, apart from 3 hours last week, interspersed with breaks of 7days or more. all fairly 'normal'.

Apparently, there are 2 types of MD - the classic vertigo, tinnitus, fluctuating deafness, and full ear feeling, and the not so classic some symptoms but not all of them. This was news to me, but probably not to you. Working on previous comments from you all, I asked about the caloric test. Was it worth doing, and would it give a diagnosis? 'Oh yes, that would confirm/disprove MD. Do you want the test?' Well, why not? And why wait until I mention it? So, I will get an appointment for that in due course - meanwhile 'keep taking the tablets' and carry on 'as normal'. Hmm...


Offline milady

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Re: Definitely maybe
« Reply #8 on: Apr 19 2018, 07:12 PM »
A morning out getting balance tests done, sensory organisation , video nystamography and caloric, which all came up as 'within normal parameters'. Got to go back for VEMP, hopefully before the next ENT appointment next month. Don't know if I'm any further forward. At least since coming off the bike on Monday things have been (dare I say it?) good. Maybe the bang on the helmet helped? :)

Offline The Wobbler

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Re: Definitely maybe
« Reply #9 on: Apr 20 2018, 05:08 PM »
The wheels grind slowly don’t they?  Hope that your “off” wasn’t too serious.

In response to your previous post - MD without all four symptoms is called atypical MD.  I’m not sure how many of the “fab four” delights you are allowed to relinquish, whilst still keeping the MD label.  Can’t be more than one can it?

Offline milady

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Re: Definitely maybe
« Reply #10 on: Apr 20 2018, 07:22 PM »
I think the mills of God go slightly faster...
I'd cheerfully give up the vertigo. Deafness I can live with.
The off wasn't too bad - nothing broken apart from the mirror, a scuff on the helmet and some interesting bruises. I suddenly saw things drifting. It only lasted a moment or 2, just enough to down me.  I got back on after a couple of minutes and rode a few more laps, but it does mess with the mind - I think that's worse than anything.

Offline milady

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Re: Definitely maybe
« Reply #11 on: May 17 2018, 07:52 PM »
Saw the man today - not a lot of progress. 'Hmm, the tests came back 'normal'. What about the vemp test?' Got an appointment for that next month . 'Come and see me after that. Keep taking the pills.' Well short and sweet. Next appointment is July.  ::)

Offline milady

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Re: Definitely maybe
« Reply #12 on: Jul 24 2018, 07:30 PM »
....or maybe not.

The vemp test showed up nothing. Saw 'the man's registrar last week 'we now think it possibly (probably) isn't MD' but of course no idea what else it might be. However when I mentioned pulsatile tinnitus, which showed up a couple of months ago, though it has faded away somewhat in the last few weeks, that seemed to start a whole new train of thought, so I've to have another MRI. If that doesn't pick up anything, I've to soldier on until the next appointment in 6-9 months. There's another little irritation - they won't make an appointment that far ahead 'just ring 16 weeks (!) before you want the appointment'. Bit difficult when you're so deaf you have real problems using a telephone. Okay, I can get someone to do it for me, but.... >:(

Hey ho. Nil carborundum and all that.

Offline The Wobbler

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Re: Definitely maybe
« Reply #13 on: Jul 25 2018, 09:19 AM »
Most perturbing…

The videos by Professor Peter Rea on YouTube are well worth another viewing.  If not by you, then perhaps by “the man” and/or his “oily rags”.

Offline milady

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Re: Definitely maybe
« Reply #14 on: Jul 25 2018, 07:14 PM »
Quote
videos by Professor Peter Rea

Do they have subtitles?

Offline The Wobbler

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Re: Definitely maybe
« Reply #15 on: Jul 26 2018, 07:59 AM »
You mean to say that you haven’t ever watched them?  :police:

Offline milady

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Re: Definitely maybe
« Reply #16 on: Jul 26 2018, 07:08 PM »
I watched some of it a while ago. Subtitles would help a lot, especially with tinny computer sound. I must have another go and see if I can make it out any better.

Offline milady

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Re: Definitely maybe
« Reply #17 on: Aug 14 2018, 07:37 PM »
This is a little rant  >:(

My copy of the consultant's letter to my doctor arrived yesterday...I do wonder sometimes if we were at the same appointment. I'm beginning to, or rather do, think that they haven't a clue what's going on really. This is fine by me, if they would be honest and say so - they started the MD hare but now seem disinclined to pursue it, or any other idea. I have seen 5 different people over the last 18 months who all seem to have a different take on what they may (or may not) have understood from reading the notes in the file from previous times. They don't know why I had this appointment - well, they asked for it! They couldn't access the results from all the balance tests (which was what we were supposed to be looking at) as the system wasn't connecting, (only had my word, from the audiologist who did the tests, that there was nothing out of the ordinary at first reading) and so no way to review them. Cast adrift until next year...

In their defence, they did organise the MRI to check out the pulsatile tinnitus, and no one has come to me in a panic so I assume that showed nothing odd.

Meanwhile, I'm coming to the view that what I have is more like a version of BPPV, but what would I know!

Offline ahammond

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Re: Definitely maybe
« Reply #18 on: Aug 16 2018, 05:28 AM »
i know how you feel. I was on six monthly check ups with the specialist at the Freeman hospital in Newcastle upon Tyne.  I would turn up for the appointment, wait around in various sitting areas or corridors, for a couple of hours have a hearing test, and then two minutes with the specialist who would  confirm that nothing had changed and to make another appointment in six months time. Even the hearing test was a waste of time as I found that I was actuallly getting better at it the more often I took it.

 In the end as the worst of my MD symptoms seemed to be in abeyance thanks to a drug called Arlevert which the specialist seemed a bit ignorant about, I just refused the next appointment and that is the last I have heard from them in over two years.  My symptoms are not too bad at the moment. No major wobblys and the tinnitus seems to come and go in severity depending on the weather, time of day, whether there are thirty days or thirty one days in the month and a possible host of other triggers.

Offline The Wobbler

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Re: Definitely maybe
« Reply #19 on: Aug 16 2018, 01:06 PM »
For MAV and the visual vertigo issues that you mention I believe that there can be a specific trigger.

MD is a different beast where there are multiple triggers going on all the time and attacks can appear random because you are not conscious of any one of them in particular.  The tipping point theory is very well described in the book Heal You Headache by Buccholz.  I would recommend this book to anyone with MD, MAV, headaches or any combination thereof.

On the subject of triggers I am reminded of the scene from Dirty Harry where Clint Beastly poses the question:

“You've got to ask yourself one question.  Do I feel lucky? Well, do ya, punk?”

Some days you will have used 5 triggers and get away with it.  On another day it will be 6 and it will blow your head clean off!

Offline milady

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Re: Definitely maybe
« Reply #20 on: Aug 16 2018, 07:37 PM »
Wobbler - was your post intended for the VV topic?

ahammond - nice to know someone else gets/got wearied by these vague appointments.

Over the last few months (touching wood here, of course) the wobbles have reduced in severity. (This may of course be due to the balance therapy, though I'm not convinced. However, at my age it does no harm to practise standing on one leg etc. anyway.) Maybe I'm just lucky. Perhaps I no longer hit the 'OMG' panic button so easily. Some of the wobbles seem to be triggered by head position, for example yesterday I glanced round at something and the room began to drift gently sideways for half a minute, then stopped, The day before, I shook my head slightly as I replied 'No' to a question and a spin began; again it was gone in less than 2 minutes. These little 'moments' - they last 2-3 minutes at most - are vastly better than the 1-2 hour spins I've had in the past (though still b****y annoying).

Offline The Wobbler

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Re: Definitely maybe
« Reply #21 on: Aug 16 2018, 09:18 PM »
My post was triggered by talk of triggers.

Your recent head movement triggers sound a lot like a BPPV element.  Peter Rea explains on one of his videos that some people live with the condition for 30 – 40 years when it can be corrected in 2 minutes with a simple manoeuvre!

Offline ahammond

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Re: Definitely maybe
« Reply #22 on: Aug 17 2018, 05:02 AM »
This may be a useful link for you. www.karger.com/Article/fullText/337947. I found it when I was looking into MD a couple of years ago. It describes an alternative to the usual exercise prescribed by UK doctors for BPPV.

Offline milady

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Re: Definitely maybe
« Reply #23 on: Aug 17 2018, 07:36 PM »
Thanks for that link - very interesting. I have marked it for future reference.

The original theory was that I had BPPV. However, the DH test, repeated on 2 different occasions, did not make me at all dizzy, and that was why they started to talk about MD. At that time, the spins would last at least an hour. Because I 'failed' the DH test, I have never been offered the Epley manoeuvre. Instead, I've been asked (each time I see someone new) if my deafness fluctuates - it doesn't;  if the tinnitus fluctuates - it doesn't, though sometimes you notice it more than others, eg if it's very quiet; and whether I get a feeling of pressure in my ear - I don't. What I do sometimes get is a feeling of pressure, like one might get with a heavy cold, at the back of my head. It sometimes seems to lead to a spin, but not always - some times it just fades away again. The other morning I woke up about 5.30 am to see the room spinning steadily round. So I shut my eyes again, turned over and pretended it wasn't happening. After a few minutes I had a feeling across the back of my head like something had moved and let that pressure equalise, and the spin stopped. Now that sounds to me more like BPPV. Anyone else recognise that feeling?

Offline MissCheeva

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Re: Definitely maybe
« Reply #24 on: Sep 04 2018, 10:21 AM »
I have Meniere's, but I have also suffered bouts of BPPV.  I figured it out when I lay down on my bed rapidly with my head at an angle and the world swam.  My appointment with the consultant was so far away that I googled the Epley maneuver and did it myself.  The first time I didn't keep upright for the 48 hours it advises and it came back, but after that I followed the advice and it went away.  Over the years I have had 2 bouts and both I fixed myself using the Epley maneuver.

I don't tend to suffer from any pressure issues at all, even when I am experiencing a vertigo attack.  Sorry.

Offline milady

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Re: Definitely maybe
« Reply #25 on: Sep 05 2018, 07:10 PM »
The pressure is barely there - no more than like placing your hand on your head, or a feeling that something is unbalanced. Imagine cold syrup, slowly trickling back after you've tilted the tin.
20 days with nothing, then 2 brief swirls yesterday evening. Back to the drawing board!

Offline MissCheeva

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Re: Definitely maybe
« Reply #26 on: Sep 07 2018, 09:30 AM »
Ah! OK maybe I need to be a little more observant of the any pressures.  I am normally so overwhelmed with the spinning and stuff that it is only afterwards when I look back that I think "Nah there was no pressure". 

Offline milady

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Re: Definitely maybe
« Reply #27 on: Sep 07 2018, 07:24 PM »
I don't always notice the pressure. Sometimes it's there, other times not - or not noticeably. I've been fine all day, just come upstairs and sat down at the computer and off we go for a quick swirl.  >:( It's gone now, but a slight weight at the back of the head remains. That will probably go away in a little while. I'm ignoring it on principle. To paraphrase 'There is nothing wrong with my balance. They had me tested.' I just wish the ears/eyes would accept that!

Offline MissCheeva

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Re: Definitely maybe
« Reply #28 on: Sep 12 2018, 09:33 AM »
I'm ignoring it on principle.

I like that attitude.  I am going to try to adopt that next time the spins make an appearance. :D

Offline milady

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Re: Definitely maybe
« Reply #29 on: Sep 12 2018, 07:15 PM »
Ignoring it doesn't always work, of course, but it's worth a try. I 'm wondering if housework is a trigger, all that bending and lifting and turning. Perhaps I should give that up and see if it helps.... ::)

Offline MissCheeva

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Re: Definitely maybe
« Reply #30 on: Sep 13 2018, 11:22 AM »
Ha Yes!  I find that sitting and reading definitely keeps the spins at bay.  Maybe that is what I should ask the Dr to prescribe  :D

Offline Spinner

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Re: Definitely maybe
« Reply #31 on: Sep 16 2018, 09:36 AM »
Keeping me at bay is definitely a good idea, many people have told me this ;)

8)

Its still cycling that does it for me. #misteratypical

Offline MissCheeva

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Re: Definitely maybe
« Reply #32 on: Sep 17 2018, 12:36 PM »
HA!  I cycled into work today so hopefully that will help. 

Offline milady

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Re: Definitely maybe
« Reply #33 on: Jan 24 2019, 07:31 PM »
A curious appointment with ENT last week. I saw the same minion as last time (noteworthy in itself!), gave my account of the last 6 months or so. According to all those tests (caloric etc), there is nothing wrong with my balance. However, I still have had various 'events', mostly minor and gone in a minute or two, and the last one had been in November. I put it to her that they sometimes seemed to be connected to head movement or position - turning quickly or bending down, but these things didn't always affect me. The drift of the conversation (why do these rooms always echo, and why do people talk so fast and turn away while they speak?) was that I (probably) don't have MD after all, and that things seem to be arranging themselves into improvement, and there didn't seem to be any need for another appointment. Before I was ushered out, I managed to ask whether I should continue taking the betahistine, since if I didn't have MD was it doing any good? 'Reduce the dose slowly and see what happens' (!), and further, would I be signed off to drive? 'We'll look at that and let you know' (!) So here I am, cast adrift somewhat. I have begun reducing the pills. I checked the DVLA letter. I have to be free of symptoms for 3 months, with or without medication.  I counted up the days since the last wobble, and and tried not to think about it. I'd made it to 58 days, then yesterday evening the kitchen slid gently sideways. B****r! Now I have to start counting/hoping all over again!

Has anyone else done reduction of betahistine? I've put it down to 2 a day, then will go to one. Should I be able to stop after that or do I need to tail it off even more?

Offline MissCheeva

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Re: Definitely maybe
« Reply #34 on: Jan 25 2019, 10:04 AM »
Oh that is so frustrating for you.  I am so annoyed as to how you have been treated.  At the very least they should have given you a plan on how to reduce your Betahistine and a follow up appointment to check that the symptoms hadn't returned.  I would contact your specialist if you can and ask for another appointment, based on the fact that your symptoms have returned after reducing the Betahistine.  Failing that speak to your GP on how you should be reducing it and whether that is actually the best course of action given your latest episode.  It annoys me that the ENT people are so over worked that they aren't giving the proper care and it sounds as if your specialist was a little flippant about it all and doesn't really understand the impact this has on your life.

Anyway get hold of someone and get some answers.  In the mean time get your stabilisers out ;)

Diana

Offline milady

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Re: Definitely maybe
« Reply #35 on: Jan 25 2019, 07:17 PM »
Thank you MissCheeva.

I try to maintain the positive attitude to all this, though it's hard work sometimes!  Yes, I'm fit and healthy, and hold fast to the view that the glass is at least half full (of something nice), but it is the day to day niggly effect this has on one's life seems to be overlooked. That little wobble was the first for weeks, but it undoes the confidence one has carefully built. I am going to continue to reduce the pills, down to one next week, but I may get a GP appointment anyway to see if I can get more useful advice. I think ENT have  classified me as 'Well, at your age you must expect these things and just get on with it.'  ::) Well why should I? >:( Nil carborundum and all that!



Offline MissCheeva

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Re: Definitely maybe
« Reply #36 on: Jan 28 2019, 09:07 AM »
Yes I know what you mean about knocking your confidence.  The same happens for me when I get a spin.  As for your ENT taking that attitude it is dreadful.  I too try to take the glass half full approach as there is nothing I can do about it and it isn't terminal.  I am grateful I can still get around and I can still hear my kids (even when they are bickering).  I try to remember that I am not in any pain and I am lucky I have a caring family to look after me when my world wobbles.  I just don't think that the experts know what it is like, or that they hear it so much that they are desensitised towards it.  Some can be positivily dismissive.  Ah well onwards and upward eh?  See how the pill reduction works and report back  ;)

Offline chrissieg

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Re: Definitely maybe
« Reply #37 on: Jan 28 2019, 09:27 AM »
Sorry to hear about your frustrating and rather patronising appointment. Unfortunately, MD and balance issues do seem to be something we end up managing ourselves and becoming experts on ourselves.
 I haven't had a spin now for a good few years but i still take 3 x 16gs of betahistine a day. i have some of the other symptoms but mildly these days. I continue these because I feel MD is a life long condition- it doesn't disappear, you just learn to manage it and/or it improves with time. But its still lurking forever. So , for me, betahistine is a preventative. I liken it to say epilepsy or heart conditions- you take the drugs to prevent attacks and wouldn't stop taking them if you hadn't had one for a few weeks. In addition, it seems to be widely accepted that betahistine has no long term side effects , so why not carry on? They don't seem to be saying with any conviction that you should reduce and stop , so maybe carry on if they give you confidence.
Good luck with the future, hope you can drive again soon, that will be such a boost

Chrissie
Chrissieg

Offline milady

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Re: Definitely maybe
« Reply #38 on: Jan 28 2019, 07:35 PM »
My jury's still out on the betahistine. The original reason for taking it was because ENT suspected I might have early signs of MD.  They haven't said that they still believe that - or disbelieve it, come to that. Every time they asked if the hearing or tinnitus fluctuated I could honestly say 'No, it doesn't'. I was going steadily deafer years before the wobbles appeared, and the tinnitus is a constant background hiss with the occasional clicking or a hum and I don't really notice it. The last wobble was no worse than any other I've had over the last 6 months. I have gone weeks without any problem before (though this was the longest  period I'd lasted since late 2017). I'm going down to 16mg a day now and will see if that makes a difference. I've missed doses and the world has failed to wobble. I had to be drug free for 48hrs to do the balance tests and I was fine. If ENT or the GP could assure me it's worth it, I'd carry on, but at the moment I don't think it's doing much. I'll report back. :)

Offline ladar

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Re: Definitely maybe
« Reply #39 on: Feb 04 2019, 11:10 AM »
Sorry to hear about your setback.  I can sympathise with you because having been vertigo free for 2 years I got the dreaded swimmy feeling and had to stop doing what I was doing and sit down as quickly as I could with a full blown vertigo attack.  Luckily hubby was around to help and stop me falling over!  I’ve also had shorter attacks since which  luckily didn’t floor me.

Unfortunately all the confidence I’d built up over the 2 years has now gone and I’m feeling very hesitant about going out in case it happens again.  Hopefully confudence will come back sometime soon and I can get on with life even while coping with the  slightly less troublesome effects of MD.

Hope everyone gets sorted without too many set backs.
Linda

Offline milady

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Re: Definitely maybe
« Reply #40 on: Feb 04 2019, 07:04 PM »
I've gone down to 16mg of betahistine for about a week now. All good until this evening when things slid sideways while I was getting dinner going. I ignored it firmly and it was gone in about a minute. I suspect it was a matter of moving briskly about, turning to put things down and then back again, and the inner ears failed to keep up. Other than that I've been fine, but I really would like not to have this little niggle lurking in the background. I have more interesting things to do than wondering when the next spin will strike - haven't we all! Resetting the counter to zero, again. Sigh.

Offline milady

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Re: Definitely maybe
« Reply #41 on: Feb 20 2019, 07:20 PM »
It seems I have not been totally abandoned by the NHS. I had a letter last week informing me that I had been referred to Dr XYZ, a specialist in audiological medicine and would be getting an appointment. This referral was news to me. I haven't had my copy of the ENT minion's letter to GP yet - only a month since I saw them ::); minions' letters don't get the same priority as the head honcho's - so when that turns up there may be an explanation therein. Anyway, I looked up Dr XYZ and he is indeed an audiology specialist with particular interest in balance problems, so it looks like I'm being passed along (like a parcel?). Today, the appointment letter arrived so I will be getting a second assessment/opinion/wild guess in due course.

I've been off the betahistine for about 10 days, and haven't noticed any great difference. A  minor wobble - background drift - for a minute yesterday, and a sudden fast spin this morning again about a minute, though the feeling that my eyes weren't keeping up when I turned my head persisted for a while. I'd roll my eyes again at this point, but that might not be a good idea.  ;D