Menieres Update August 1, 2014

Well here goes. Since I returned from Scandinavia late June, I have had a Buggah of a time with many days of attacks and dizzy feelings. So, we have done a few things and put back in place a couple of regimes to help reduce the severity and frequency of the attacks.

I was having problems with my eyes. My eyes have both had cataracts and the right eye has had a detached retina. My vision was showing the left eye as ok but the right eye saw the vision down and tilted down to the centre. I was giving the optometrist a headache in getting this sorted out, so he put my hands on the ‘steering wheel’ to get the vision I saw, level and clear. What a difference I was able to make to my own vision by just tweaking a few dials to a point that the eyes almost see the vision at the level and the angle vision has now been corrected. We hope that the extra prism the optometrist was able to include in my prescription has been able to help reduce my Menieres dizzy attacks. I also drive with orange tinted sunglasses to reduce glare even at night.

The best audiologist anyone can have is their spouse. Mine has been at me for quite a few years to get hearing aids. Well, today, I purchased a pair of hearing aids. I now can hear things that had left my hearing ‘vocabulary’. The crackling of paper is very predominate and the sound of running water into a tub of water is quite loud. Hopefully, this will assist in my keeping the balance mechanisms stable, thus reducing the Menieres attacks. This was done through who were involved with Professor Clarke in the discovery of the cochlear implant. Their hearing aid is able to be controlled by me from a program on the computer and so if I want to tweek them a little, I can at will. These are as good as what’s in the market for over $10,000 for less than $4000 including the program and twelve months supply of batteries.

Before we went to Scandinavia, I was having a green drink each morning (silver beet, nuts, apricot juice, and whatever else Lyn wants to disguise from me, whized up in the Thermomix) and going for a 40-60 minute walk before or after breakfast each day. I have started that again and also taking life a lot more easy with a sleep or two during the day.

One of the drugs I have been prescribed by my ENT is serc. These are produced in France. However, the pharmacist and doctor suggested a cheaper version which is produced in Pakistan or India – you know, the non branded drugs that are on the market as “cheaper, but with the same ingredients”. Maybe, but what about the quality of those cheaper ingredients? So I have gone back to the original serc from France. Some Meniere’s Disease sufferers on Facebook had reported an increase of attacks when on the cheaper Sinieres brand of serc.

For the last 4 months, I have been taking a new product called “Meniers Balance” made in Boise, Idaho. The researcher who worked on this project saw her mother with Ménière’s disease and decided to do something about it. The product is designed to reduce tinnitus and vertigo. I have spoken directly to the researcher and am one of the test cases for the product.

This all seems to be working well and tomorrow will make it two weeks since I have had an attack or any sign of being seriously dizzy. A bit of an investment but we are hoping that my quality of life is back on the mend again and I can be back helping others, with the same disease, a little more.

I have a project I have started in order to raise some money to get together more resources for those who have Meniere’s Disease. We all have ‘brain fog moments’ and Menieres sufferers are at the top of the list for such experiences. If you send your, or anyone else’s, brain fog moment (you may be fortunate to have more than one – they will all be accepted) to the following email address – we will include it/them in an iBook to be published just when we have enough stories. They can be embarrassing, silly, humorous, or just ‘very interesting’. I have a couple of illustrators who will be doing drawings or paintings, especially for the book, on a voluntary basis. All contributors will be kept anonymous or with just the initials. The contributors are already coming from all over the world and so this has become an international effort indeed.

So send in your story and get published and at the same time, help raise funds for Menieres Resource Centre, Melbourne, Australia.

Author: @colinspain

The Official Blogger for Grey Nomads Travel and Cruise Group Tours

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