Managing Ménière’s 

Hello anybody still around to read this – apologies for being the most infrequent blogger in the blogsphere.  However frankly there is very little to blog about – I no longer work, I’m stuck at home most of the time now and therefore there’s little (nothing!) of interest really going on.

So I’m now just writing this so that I might read it some point in the future I think.

After about 18 months suffering with the Ménière’s being really bad it is … perhaps a little better.  I hate to say that in case that triggers it all off again.  The frequency of the really bad vertigo attacks has diminished at least.  We’re at about 1 a month currently.  Which is better than one or two a week as it was back last year.  However difficulty balancewise, real issues with Hyperacusis (sensitivity to sound) and just hearing continue and vary but I’m learning to generally cope.

I recently saw the Neurologist who reviewed my MRI that I had done.  Nothing obvious.  Which is in someway good but in otherways a bit of a bugger as therefore no new treatment plan.  However he’s referred me to a Neurotologist who specialises in the bit between the ear and the brain.  Maybe that’ll yield something new we’ll see in time.

Via one of the online forums I’m on I found this page…

https://www.dizziness-and-balance.com/disorders/menieres/menieres.html#manage

It says…

How do I manage an attack?

During an acute attack, lay down on a firm surface. Stay as motionless as possible, with your eyes open and fixed on a stationary object. Do not try to drink or sip water immediately, as you’d be very likely to vomit. Stay like this until the severe vertigo (spinning) passes, then get up SLOWLY.

After the attack subsides, you’ll probably feel very tired and need to sleep for several hours.

If vomiting persists and you are unable to take fluids for longer than 24 hours (12 hours for children), contact your doctor. He/She can prescribe nausea medication, and/or vestibular suppressant medication. He/she may wish to see you or even admit you to the hospital if you are dehydrated. Meclizine (Antivert), lorazepam and clonazepam are commonly used vestibular suppressant medications and Compazine, Phenergan or Ondansetron are commonly used medications for nausea.

Certain self-care tactics can help reduce the impact of Meniere’s disease. Consider these tips for use during an episode:
* Sit or lie down immediately when you feel dizzy. During an episode of vertigo, avoid things that can make your signs and symptoms worse, such as sudden movement, bright lights, watching television or reading.
* Rest during and after attacks. Don’t rush to return to your normal activities.
* Be aware of the possibility of losing your balance. Falling could lead to serious injury. Use good lighting if you get up in the night. Consider walking with a cane for stability if you experience chronic balance problems.
* Avoid driving a car or operating heavy machinery if you experience frequent episodes of vertigo. Doing so could lead to an accident and injury.

The unpredictable episodes of vertigo are usually the most debilitating problem of Meniere’s disease. The episodes often force a person to lie down for several hours and lose time from work or leisure activities, and they can cause emotional stress.
Vertigo can also increase your risk of:
* Falls
* Accidents while driving a car or operating heavy machinery
* Depression or anxiety in dealing with the disease
* Permanent hearing loss

The real interesting bit for me was reading this is that this is how over the last 18 months or more that I’ve come to cope with an attack myself through experience.  So I completely support it (exception to the medications which I’ve not tried those ones so can’t say).  But I’ll highlight my experience.

During an acute attack, lay down on a firm surface. Stay as motionless as possible, with your eyes open and fixed on a stationary object. … Stay like this until the severe vertigo (spinning) passes, then get up SLOWLY.

100% – this is the best way to cope with it I find.  I try to get down on the floor and lay face down as soon as it starts to move.  I then raise to being on all fours or kneeling and then focus on a point on the floor until it slows.  It doesn’t always work but sometimes I can limit an attack to a few seconds or a minute or so.  If not I’ll get sat up leaning forward looking down and the floor and try to ride out the spin for an hour or two.

After the attack subsides, you’ll probably feel very tired.   I’m normally shattered for at least the next 24 hours.

* Sit or lie down immediately when you feel dizzy. During an episode of vertigo, avoid things that can make your signs and symptoms worse, such as sudden movement, bright lights, watching television or reading.

Totally agree – moving slowly avoid looking to the affected side (mine is left) so I’ll move my whole body to the left I’ll not move the head to the left at all.
* Rest during and after attacks. Don’t rush to return to your normal activities.

I completely agree – once I’ve had an attack that is it – that day at least is written off I need to just sit still and recover.
* Be aware of the possibility of losing your balance. Falling could lead to serious injury. Use good lighting if you get up in the night. Consider walking with a cane for stability if you experience chronic balance problems.

Getting up at night is difficult for me.  We leave the landing light on and the door ajar so I have some light but still my wife finds me ability to walk into the wall, bed, door highly ammusing.
* Avoid driving a car or operating heavy machinery if you experience frequent episodes of vertigo. Doing so could lead to an accident and injury.

In the UK you can’t drive with this disease.  Recently we finally sold the existing two cars, one of which was simply just sitting on the drive most of the time and bought a newer middle sized vehicle my wife is confident to drive.  My large estate car is gone and her beloved little nippy runabout.  I’m no longer insured to drive and I resigned to never driving again.  But boy that takes your freedom away.  I have many good friends in AA to thank as they are going out of their way currently to help give me lifts to meetings where they can so I still regularly attend my home groups which is vitally important for me.

So I’ve put this here for anyone struggling with vertigo and esp Ménière’s as I’d recommend much of what it says as I worked it out through my own experience.  Also so that anyone who’s wondering what I go through this goes someway to explain it.

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About furtheron

Music and guitar obsessive who is a recovering alcoholic to boot
This entry was posted in Menieres, Retirement and tagged , . Bookmark the permalink.

9 Responses to Managing Ménière’s 

  1. Hi Graham!
    My heart goes out to you. I can’t imagine the suffering you are enduring.
    Do you have any good days?
    Thank you for helping me understand how you cope.
    My husband had a mild case for several months.
    With love and prayers,
    Wendy

  2. Ainsobriety says:

    This all sounds hard, but your writing is quite accepting and straightforward.
    Maybe the next doctor will see something different.
    Take care
    Anne

  3. Graham, for the first time I suffered from vertigo after a fall on the ice and a concussion. A physical therapist did something called the Epley Maneuver on me and it fixed the vertigo. Mine was nothing as serious as yours but I now understand how debilitating it can be. I consider myself very lucky. I hope this new neurologist can help you. My grandmother had Méniéres and I remember how she suffered. Thoughts and prayers for you.
    Sharon

  4. angharad says:

    it sounds grim. how horribly ironic that you give up the falling down and the world spinning when you get sober and then get this disease. so glad you are able to get to meetings.

  5. Hi, Graham. I’m still lurking about although not as much. Sorry to hear about this. How do you rise above such rotten luck? Thanks god for your family. Can you play your guitar(s) between attacks or is that over as well?

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