My Menieres experience...

So, I have had Meniere’s for a few years now and have been learning to cope with it.  Its been a really difficult journey and really the point of my post was that I wanted to tell someone about it as the condition can be isolating and difficult for people to understand – especially for those around you who need to cope with you and those who have just been diagnosed with it.

My journey actually started around 20 years ago when my father was diagnosed with Meniere’s.  It started with his right ear and then eventually spread to his left.  He had a Labarynthectomy about 10 years ago and was fine for about 5 years until it came back in his other ear.  He tried everything, gentamicin, grommits in the ear, perforation of the ear drum to relive the pressure and fluid.  We saw some of the best doctors on it but there was no final solution.

Back then I didn't really understand the impact the dizziness was having on him.  It was also difficult for our family to cope with it but we sort of muddled through.  Dad is now 76 and has other health issues which means he is confined to his bed - how much of this relates to the Meniere’s we don't know.

I have always been quite fit and illness free.  About 4 years ago my right ear started blocking – the aural fullness so many of us know about.  I didn’t do much about it, tried blowing my nose to relieve the pressure, removing wax etc.  Nothing really worked.  Then I started to have concentration issues when looking at a PC or mobile for prolonged periods of time – the focusing felt funny and head sort of swimmy as one user described.  Then one day the vomiting started.  I was in the office, getting lunch, sat down at my desk, something popped with my vision and had to go to the toilet to vomit.

My rotational dizziness didn’t really start for another year or so.   I then went through a period of having rotational dizziness and vomiting.  To cope with it I had to lie down in bed in a dark room and keep still for a few hours.  It felt like everytime it occurred, my brain was working overtime to compensate and I would get physically drained and would need to rest to rid myself of the dizziness and get my energy back.

Just before I had my first vertigo attack I went to see a specialist.  He was very good and an expert in Menieres.  He understood my conditions, my history and concluded it was endolymphatic hydrops (Menieres).  I went on Serc, Betahistine, 16mg x 3 a day which for the past year has been raised to 4 times a day.

Went I found out I had Menieres I immediately thought about my father and the pain and depression he went through.  It can be very debilitating.  However, from what I can see, since there is no real cure this is something we need to cope with for the rest of lives and if we take that approach to it, it is something we can do.

I immediately started looking at trigger points for my Menieres – salt, tiredness, stress, sleep, concentrating for long periods etc.  My personal conclusion is that at the extreme excesses of these trigger I would get attacks.  If I ate too many takeaways over a period of time, working too hard with little sleep (I have 3 small kids), loud noises, concentrating too much on my PC and my mobile.  Also what I found was that for my Menieres I would go months without an attack, I would then get lazy with sleep or diet and then an attack would happen (I think but cannot be sure).  Personally, some discipline is required in the above areas, which might control the attacks.

Going back to my father, there is a probability (according to my specialist) of familial Menieres – in that it could be hereditary (I really hope to god my kids do not get it  .  My 3 sisters do not have it but seems like I have drawn the short straw in that regard!  I always have been tough mentally and didn’t want to go the way of my dad, and my personal mindset was f**k Menieres, I will conquer this and not let it ruin my life.  I ran the London marathon in April with some difficulty – I got through it but my specialist thought I was crazy.  Probably was a mistake in hindsight as during the training I had many attacks.

For now, my attacks come and go.  Usually months in between.  I have just come off a recent attack which lasted on and off for about 2 weeks.  It has been difficult at work and home (my wife especially, who has been amazing) but somehow have managed to get though and to the otherside.  Also, I feel, personally, that my body has started to adjust to the attacks.  If I feel an attack coming on, sometimes it can be overcome by focusing on a point for a while and not moving my head too much.  However, the vertigo does come sometimes (like in the last 2 weeks) and I do need to lie down, or sometimes puke.

I’m sorry for my rambling but just wanted to give some of the newbies my experiences and just to say you can cope with this and learn to live with it.  Find your own triggers, understand what sets you off. 

For now I am hoping that the Menieres does not spread to my other ear like my father.  I will continue living my life with this in the background, but I am not going to let it defeat me.

3 likes, 11 replies