My Personal View Of Meniere’s Disease.

Meniere’s ? Never heard of it ? Is it a tropical disease ? Is it rare ? Are you making it up ? Yes, these are all common responses to my rare announcements that I do indeed suffer with Meniere’s Disease. It is one of those unknown illnesses that is very rarely spoken about, either among the local community or in the press.

Please bear in mind at all times while reading this that I am not medically trained and if you are in any doubt about your own health or a loved one then please contact your doctor.

So what is Meniere’s ? Meniere’s is a rare disorder that affects the inner ear. The symptoms include vertigo, tinnitus, hearing loss, pressure in the ear and a constant unbalanced feeling. These attacks are usually intermittent and come on without much warning. They last in varying lengths but usually between one hour through to 24 hours. Symptoms also vary widely between people and can vary in severity too. As the disease progresses the attacks can change in severity. Sometimes they worsen and sometimes they lessen. And this is the problem for most sufferers.

 

meniere's ear

There is NO pattern to Meniere’s. It is unpredictable and there is no way of determining how long it will last. This is perhaps the greatest issue that I and others detest so much. Can you imagine leaving the house every day not knowing if you will have a severe vertigo attack ? Sometimes so severe that you are unable to stand or work out which way up the world is. I have, on a few occasions been bundled off in an ambulance to the nearest hospital, while the paramedics check me for signs of a heart attack or stroke. The suddenness of the attacks is so quick that you do not have time to return home or even make a call to a loved one. You are in fact at the mercy of strangers who find you on the floor unable to stand or talk sense sometimes.

 

meniere's worry depression

According the the NHS website, around 1 in 1000 suffer from Meniere’s Disease in the UK. Personally I would put that figure even higher as I think Meniere’s is one of the most under diagnosed conditions in the country. So many people are diagnosed late after suffering for many years, because there is no one definite test that can pin point the condition accurately. In my case I was given a firm diagnosis TWENTY years after my first symptoms ! And that is not unusual.

That brings me nicely to my own story of Meniere’s Disease, my background and how I cope with it ( or not as the case may be ). I had my first symptoms on the 3rd March 1986. Yes I remember it well. I was working in a florist at the time doing some work experience for my floristry qualifications. I hadn’t intended making floristry my career but, after leaving university with a degree in History I found suitable jobs in the museum sector few and far between. So there I was one morning wiring roses for a wedding bouquet when I suddenly felt the room spinning and ended up face planting in the bride’s bouquet which was on the work bench in front of me. I was sent home to rest and went to bed thinking I had a virus.

I was left, however with a constant unbalanced feeling and intermittent bouts of dizziness, severe ear pressure and tinnitus, so much so I severely restricted my driving. When I found out I was pregnant a few weeks later my doctor decided that my pregnancy and change of hormones were contributing to my dizziness issues. So for the remainder of my pregnancy I battled with morning sickness, heartburn and terrible bouts of vertigo. I was so looking forward to the birth of my baby, not just to hold her in my arms, but to be rid of the debilitating intermittent vertigo that was ruining my life. And so in the November I gave birth to my lovely daughter and thought no more about the dizzy spells. That was until I realised after about two months, that the dizzy spells had not left me and showed no signs of dissipating.

Once again my doctor advised me that it was hormone related and that it would clear up if I gave it enough time. After two more years of suffering the debilitating symptoms I became pregnant again. And yes, you guessed it ! My doctor once again said it was hormone related. I persisted with the symptoms and they became part of my life. I was made to feel like a complainer if I dared to bring it up in front of a doctor. So following the birth of my second and third child I decided to try and find a solution to my problem. It wasn’t easy. Many times I was rebuffed and given different diagnosis, none of which made any sense. I was often told it was a ‘womans’ issue ! It isn’t by the way. Men suffer with this condition too !

Eventually I paid private and found myself a good ENT Consultant who diagnosed Meniere’s in 2005. WHAT A RELIEF ! I didn’t care what I had by that stage. I was just glad that I finally had a name to my issues. I received various medications for my condition and I was sent on my way. Was that the end of it ? No, sadly not. I have still had attacks while on the medication, although I do receive a ‘warning’ before it gets to a serious attack. This gives me time to get home or phone for help to get home.

 

menieres

So if you are reading this because you have Meniere’s or suspected Meniere’s, or know someone that does, then you have my greatest sympathy, especially if you haven’t received a firm diagnosis. I cannot comment on the medication you may / may not receive or the care you receive at the hospital, but I can share my simple ways of helping yourself through this.

  1. Be positive. During your worst Meniere’s attacks it can honestly feel like the end of the world. But it isn’t. Trust me. Eventually this bad attack will pass and you will feel better than you do right now.
  2. Seek help other than medication. Complimentary therapies are trial and error. What suits one person does not suit everyone. I tried acupuncture and it didn’t work for me but my friend tried it and she raved about it. For me the best complimentary therapies that worked were hypnotherapy, yoga and meditation.
  3. Try Vestibular Exercises. I was given a set of vestibular exercises by my ENT consultant and I cannot stress enough how AMAZING these are. They work by re training your brain, eyes and ears into creating a more stable balance system ( something that Meniere’s sufferers don’t have ) The exercises are really difficult to start with as they challenge your already weak balance system but the results are fantastic. I now have a brilliant balance system and I can even pirouette like a ballet dancer !
  4. Low salt diet is recommended for all Meniere’s sufferers by the medical profession as excess salt in the body ( and ears ) is known to contribute to Meniere’s attacks. Yes, a low salt diet sounds rather restrictive but you can adapt it to suit yourself. For instance I try to stick to a daily salt intake of about 2-3 grams ( the recommended daily amount for most adults is 6 grams ) but if I have a small slice of pizza which I know will take me well over the 3 grams I drink a LOT of water to try and flush the salt out of my body.
  5. Exercise. This is crucial. Not only does it help strengthen your balance system but it also produces endorphins which give you a positive up beat feeling.
  6. Drink plenty of water. As I mentioned above this can help flush out all that nasty salt. ( Basically you drink lots and then pee it out ! )
  7. Restrict alcohol. This is easy for me as I am now tee total. Alcohol is a known trigger for Menieres attacks and think about it….if alcohol makes you feel dizzy and you already feel unbalanced then why make it worse ? I stopped drinking alcohol for this reason and I feel much better for it.
  8. Carry an ’emergency’ supply kit with you in case of an attack. This doesn’t mean I am been negative but merely reassuring you that should something happen then you will be better equipped to deal with it. I carry a mobile phone, bottle of water, emergency medication, mints, chewing gum ( for the sickness ) and Rescue Remedy for those times I might feel a little panic. Sometimes it can be useful to carry a small card in your purse / wallet to explain that you have Meniere’s and may be prone to vertigo attacks. This can help prevent a strangers assumption that you are drunk ( which often happens as the Meniere’s symptoms can be similar to one who has had too much alcohol.)  Sounds funny but it is a common problem. I actually have a medical ID bracelet for another condition and so I have had my Meniere’s condition engraved on my bracelet.
  9. Eat a healthy diet. It goes without saying that a healthy diet is best for our physical and mental health. Too much refined sugar can have a negative affect on our body.
  10. Try not to dwell on your Meniere’s. It does not define you. You are still the same person you were before your diagnosis. I find dwelling on negative aspects of my life only make them seem bigger and I am less able to deal with them. Try look for positives in your life and think of all the good days with your family and loved ones. Stress is a massive trigger for Meniere’s so keep stress to a minimum and deal with the stress as it comes into your life.
  11. Lastly, DO NOT struggle on your own with this condition. Visit your doctor for more medical help if you are not happy with your treatment. Things have improved over the years since my first symptoms but sometimes we still have to push for help as many GP’s are not knowledgeable about this condition. If you are struggling mentally to cope with the condition, then again ask your doctor for help. CBT and counselling are good ways of helping people deal with chronic conditions. For me hypnotherapy was amazing in helping me deal with the emotional side of the condition.

I hope that this blog post has in some way helped you, whether you have Meniere’s or you know someone who does. If you have any questions please comment below or alternatively please message me.  Have you any experience of Meniere’s ? If you do, it would be great if you could comment below so others can read of your experiences with this complicated condition.

Until next time dear friends, I wish you well. Stay healthy and take care.

Susanna xx

http://www.menieres.org.uk

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4 Comments

  1. 18th January 2017 / 10:33 am

    I have had several bouts of vertigo and labrynthitis which share some of the symptoms Susannah and they are horrible so it must be awful for you having attacks without warning. I will take on board some of your emergency kit suggestions in case I have further oroblems. Thank you for sharing – wishing you good health in the future.❤

    • Susanna
      18th January 2017 / 1:22 pm

      Thank you Anne. Vertigo is just horrible isn’t it ? The emergency kit just gives me peace of mind when I am out and about. The worry of it happening while I am out is a big issue for me and I have had to work hard to overcome this worry. Thank you so much for your comment. I hope you keep well too xx

  2. Jacqui Quarton
    15th March 2017 / 1:42 pm

    Hi Sue, you say you carry chewing gum for the sickness, how does it help? That is the thing that gets to me most when I have a vertigo attack, I hate hate hate being sick! Right now I’m sitting on a boat (aka our sofa) thinking I’d really like to get off now! Have you tried ginger at all? Xxx

    • Susanna
      17th March 2017 / 4:49 pm

      Hi Jacqui. Do you know, I have absolutely no idea why the chewing gum works ! I think its maybe the fact that it helps relax me in some way. My ENT consultant did say that the action of chewing helps keep your Eustachian Tube open as sometimes if this tube shuts tight then this can cause a vertigo attack. Yes ! I eat ginger sweets when travelling. I love Gin Gins which I get from any health shop. I think you have to try different things until you find something that suits you. Some of my dizziness and sickness is due to anxiety and so if I can keep the anxiety under control then my symptoms are much less. If you get my meaning ? xxx

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