Author Topic: MD without Vertigo?!  (Read 3127 times)

Offline monicamck

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MD without Vertigo?!
« on: Feb 05 2016, 10:34 AM »
Hi, All
I am new to the forum as I have just been diagnosed with MD.It started last May with fullness in my right ear and tinnitus, no vertigo or other balance issues. In December the ENT specialist diagnosed me with MD...since then I only had a bad night with BPVV and currently I feel more lightheaded then dizzy(I am on Betahistine 8Mg).Has anyone experienced MD without vertigo? also does anyone know if lightheaded is one of the side effects of Betahistine please?
Wishing you all to get better, looks like there are lovely people on this forum xxx

Offline harry

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Re: MD without Vertigo?!
« Reply #1 on: Feb 05 2016, 02:04 PM »
My understanding is that to be diagnosed with Meniere's then all 4 symptoms must be present. Vertigo,tinitus,fluctuating hearing loss and fullness of the ear. You can have 3 but you must have the rotational vertigo. If no vertigo is present and it is a dizziness/ lightheadedness then Endolymphatic Hydrops is more likely.

Meniere's is a term used by some for both, but there is a difference between the two. I read an article some time ago stating MD was a servere case of EH but vertigo is not really present in EH just a dizzy feeling.

MD is normally diagnosed after other things are ruled out or by busy ENT consultants who want to move on.

The treatment is much the same except that with MD the main focus of treatment is on the vertigo side of things as that is normally the most unpleasant part of it.

8mg is a very low dose for MD but may be sufficient for EH.

I assume you have a follow up appointment. I would suggest you keep a record of how you are feeling and your symptoms and discuss it at your next meting. It may help your consultant have a clearer picture of what is happening and when.


Offline The Wobbler

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Re: MD without Vertigo?!
« Reply #2 on: Feb 05 2016, 05:21 PM »
My understanding was the same as Harry’s, but when I looked it up it seems that you can have "atypical MD" without vertigo, otherwise called cochlear hydrops.

I have always found this site to be very authoritative on the matter;

http://www.menieresinfo.com/start.html


Offline Spinner

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Re: MD without Vertigo?!
« Reply #3 on: Feb 05 2016, 06:48 PM »
My understanding is:

Meniere's is "primary hydrops". i.e. hydrops with no obvious cause

If you have "secondary hydrops", thats hydrops which is a knock on effect from some other illness



Offline harry

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Re: MD without Vertigo?!
« Reply #5 on: Feb 06 2016, 12:40 PM »
Interesting isn't it.

You can have MD without vertigo known as CH

You can have EH with or without vertigo

MD normally has EH

But EH does not mean you get MD

Just shows the danger of the internet. 20 odd years ago we would have just accepted what the doctor says. Now we question it because of the internet.

The problem is who is putting up the reports and papers we read and accept. Is it a world expert or an undergraduate paper for their degree.

As with all things MD who knows.  :)

Offline monicamck

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Re: MD without Vertigo?!
« Reply #6 on: Feb 06 2016, 07:28 PM »
Thank you all so much for your answers.Trully lovely people. Yes the diagnosis was very rushed and it is so hard to get another  appointment to ENT specialist:( i will go private soon...I do feel for all the people with MD and I hope and pray they find a cure soon xxx

Offline The Wobbler

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Re: MD without Vertigo?!
« Reply #7 on: Feb 06 2016, 07:47 PM »
Harry.  Who to believe?  “Believe nothing no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and common sense”. ~ Buddha

As for MD, and to paraphrase the words of Sir Winston Churchill “it is a riddle wrapped in a mystery inside an enigma”.

It is no small wonder that the medical community struggle to deal with us!  ;)

Offline harry

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Re: MD without Vertigo?!
« Reply #8 on: Feb 06 2016, 08:12 PM »
Hi Monica,

You mention BPVV what makes you think it's BPVV and not vertigo connected to MD?

I am very surprised that you were not booked in for a follow up appointment with your consultant in say six months. To a) check your progress and b) check your medication levels.

What tests if any did he do to make him decide it's MD?

Harry

Offline harry

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Re: MD without Vertigo?!
« Reply #9 on: Feb 06 2016, 08:19 PM »
Monica be careful of who you choose when going private. I paid £160 for a half hour second opinion. All he did was a hearing test,ask me some questions and then say that it could be MD but he wasn't an expert !!!!!!

If you are going to go private use the Meniere's society to locate a MD expert near you or post the county where you live and I am sure that someone on here can give you a name close to where you live.


Offline Spinner

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Re: MD without Vertigo?!
« Reply #10 on: Feb 08 2016, 10:51 AM »
^^ good advice

I was tempted to do one of those bupa health checks, as I've not got on very well with my gp (understatement). Every time he opens his mouth a lot of bullshit comes out :)

But perhaps a more focussed consultation from someone recommended by mensoc would be a better approach.

Offline monicamck

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Re: MD without Vertigo?!
« Reply #11 on: Feb 08 2016, 01:23 PM »
Thank you lovely people. Great advice regarding private consultant, I will check MD org first, thank you.
To answer your questions: I believe it is BPVV as I get dizzy only if I turn my head, if I sit upright with head straight I do not have any balance issue.
I do have a follow up with NHS-ENT specialist but that is in June  :(  the only test I had was an MRI scan (without contrast) to prove that is not a tumour… I believe he based his diagnostics on the fact that my hearing is fluctuating (I’m keeping a daily diary on symptoms but he was not interested in that).Also the Betahistine it has been prescribed to me by a GP that I have previously seen for an ear infection?!? (same ear…)
For the past year I have been sent back and forwards from nurses to GP to ENT…from perforated ear drum, ear infection, damage on the nerve (due to shingles?!...)  even if the last specialist was extremely good and he could diagnose  MD without any other tests I am still reluctant to believe as I do have other symptoms that I can not see it anywhere related to MD 
 However, just to be cautions I have cut salt, alcohol and I am planning to start Yoga this week   :)
**I do apologise for any spelling errors and I hope my text makes sense. I am quite frustrated with my diagnosis and also English is not my first language  xx Monica **

Offline monicamck

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Re: MD without Vertigo?!
« Reply #12 on: Feb 08 2016, 02:03 PM »
I live in Northamptonshire. If anyone knows/recommends a good ENT or MD specialist in the area it would be greatly appreciated. Thank you

Offline harry

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Re: MD without Vertigo?!
« Reply #13 on: Feb 08 2016, 06:51 PM »
Hi Monica,
You mention a number of things. I don't know much about BPVV but I know that having can lead to a misdiagnoses of MD and that it can be treated.

You mention MRI which is good that it is clear,but you don't mention hearing test. This would show what type of hearing loss you have ie conductive ( which is normally middle ear) or Sensorineural ( which is more likely inner ear and MD related). Middle ear hearing loss is not MD related and is more linked to ear infections,Ear drum problems both of which you mention. a middle ear problem would also link up the BPVV.(I think)

It is good that you are going back in June as that will allow enough time for any ear problems to settle down and will give a clearer picture to the consultant. May I suggest a visit to GP to ensure any ear infection has cleared up and a check for fluid behind the ear drum and BPVV check. You can then ensure they are fully treated before your return visit in June.

Can't help with consultant up north as I live in the south.Although I would hold off until after your next ENT visit myself as at the moment there could be other factors masking a MD diagnoses and things might be a bit clearer in a few months.

To me there seems a lack of evidence to support a MD diagnoses yet and it is interesting about the other ear problems which could give you the problems you mention and be treated to resolve them.

Regards

Harry



Offline monicamck

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Re: MD without Vertigo?!
« Reply #14 on: Mar 02 2016, 07:08 AM »
Thank you Harry,
I have an appointment today to see one of the ENT Specialist recommended by MDUK and I will let everyone know how it went.

Hope everyone feels better, have a lovely day
Monica

Offline monicamck

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Re: MD without Vertigo?!
« Reply #15 on: Mar 09 2016, 01:26 PM »
Thank you everyone for your replies and great advise regarding ENT Specialist Harry, thank you. I went to see a private consultant recommended on Meniere's ORG and oh my God what a difference it makes. He knew what I'm talking about, not necessary told me anything new but he explained to me and gave me good advices. I am going back to see him soon and I feel so much better knowing is someone I can trust. If anyone in Northamptonshire area looking for an ENT consultant I totally recommend it (NHS as well)
Thank you and I hope everyone feels better xx

Offline harry

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Re: MD without Vertigo?!
« Reply #16 on: Mar 09 2016, 04:54 PM »
Hi Monica,

I am really pleased that you have found someone who will be able to help you and that you are able to continue with him in the future and NHS as well. Good result all round !!

Out of interest did he give any ideas as to what you have or are you waiting for further test info before he commits himself?

Take care

Harry

Offline monicamck

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Re: MD without Vertigo?!
« Reply #17 on: Mar 10 2016, 08:04 AM »
Hi Harry,

He believes is cochlear hydrops.I am waiting for an appointment for an ECOG test but he explained to me how complex this (Meniere's) is and the test are not that accurate - especially if not all the symptoms experienced.
To be fair I would have paid someone just to listen to me :) it makes a huge difference to see that someone is interested on how you feel and works with you. Simple things like "if you do not want to take Betahistine do not take it (as it gives me terrible headaches) and we will try something else helps me a lot and gives me confidence that I m in good hands.
I will keep posting in here and I hope one day my notes will help someone as much as people on this forum helped me.
Once again, thank you for your advice.

Monica

Offline dmj

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Re: MD without Vertigo?!
« Reply #18 on: Mar 10 2016, 08:30 AM »
Hi monica

I am glad you feel you are getting some help.   your phrase 'I would have paid someone to listen to me' made me laugh as I'm doing the same.   I have a private appointment in a couple of weeks time.   I think my NHS consultant is very good but the last time I saw him he just didn't listen, so I came away feeling very down.  My MD is atypical, my small amount of hearing loss is in the high frequencies so for me the vertigo/dizziness has been the major problem.

dmj


Offline monicamck

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Re: MD without Vertigo?!
« Reply #19 on: Mar 18 2016, 10:34 AM »
Hi DMJ,

Good luck with your consultant. Hope all goes well and he/she listens to you :)
My (good) consultant referred me for a ECCOG test in 2 weeks, I will post after

Monica

Offline monicamck

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Re: MD without Vertigo?!
« Reply #20 on: Sep 26 2018, 09:39 AM »
Good Morning Lovely people,

Just a quick update on : MD without Vertigo....
It looks like slowly but surely develops into "proper" Meniere's :(
Strangely 2017 was not too bad, my hearing improved...all tests were good. This year I don't know what really happened but I started to feel dizzy...no full vertigo yet but I feel like I'm drunk most of the time.
Because tests were no so bad my last ENT app was June 2017...that was an appalling consultation...not my usual ENT specialist...im actually not sure if he was a qualified ENT doctor...he just said to look up on you tube for BPPV if you start to get dizzy :)funny but not funny ...I have not asked any other questions and I thought was a waste of time.im going to see my usual Ent specialist in 2 weeks time...private app.I will post updates xx Hope everyone is ok xx

Offline MissCheeva

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Re: MD without Vertigo?!
« Reply #21 on: Oct 15 2018, 10:40 AM »
Hi Monica,

I hope your proper specilist helps you out.  Sounds like you saw a registrar.  I have seen them occasionally and it can feel like they don't know what they are doing.  They are consultants in training and so depending on where they are in the training they can be inexperienced in the field they have chosen to specialise in.


Offline monicamck

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Re: MD without Vertigo?!
« Reply #22 on: Oct 15 2018, 11:40 AM »
Thank you Miss Cheeva,
I have a private appointment tomorrow and I will see what the consultant is saying ....still no vertigo but kind of "drunk"  most of the time :( xx