Thanks for visiting, and welcome to my blog about life with Meniere's Disease!
A 'unique' and very challenging condition to deal with, life with Meniere's Disease can be scary, isolating, and immensely frustrating. If even one person who suffers like I do can find this blog, and feel some sense of connection, I will be happy!
My story with this condition has many hills and valleys, as does everyone's. The basics of my story go something like this:
I was diagnosed with Meniere's younger than most - I had only just turned 19 when I had my first 'spell', as I refer to them (six years ago!). I was in university, and living in a townhouse style student accommodation in
St. Catharines Ontario. One of my first spells came in the middle of the night - waking up dizzy and nauseous was terrifying - I managed to 'sleep it off', but when I had 2-3 more of these spells, I decided that this was NOT okay, and that I needed to get checked out. Not only was it strange and scary, but it was interfering with my life - I was a varsity swimmer, involved in student government and other volunteer pursuits, had a part time job and school work, too! The nurse at the health clinic immediately assumed I was pregnant (spells of nausea, extreme fatigue), and tested me for that. Once it was determined, a few times over, that I was NOT pregnant (sometimes I think that would have been easier...), I was checked out in further depth. Unable to find much, I was referred to an ENT. It was determined that I had a loss of hearing in one ear, and more tests were done. Many ear tests, and at least 4 MRIs, and nothing really in way of a diagnosis. Meanwhile, I was still getting these spells - in the beginning they were almost all the same, the room would spin, my stomach would spin, and I was just generally miserable. The spells seemed to get better, lifting from once a week to once a month or so, which allowed me to go about my life a little bit more 'normally'.
I was finally referred to a 'dizziness specialist' in
Toronto. After several tests, some of which actually MADE me dizzy (seemed counter productive!), I was offered a diagnosis of ‘Meniere’s Disease’. While this didn’t really mean much to me or my family, it was a relief to have a name for what I had been experiencing. I was followed by this doctor, have gone though several more tests, tried numerous drugs, and many other treatments for my condition.
I now live out in Jasper,
Alberta, at least four hours from the nearest specialist who may be able to offer me assistance. I recently made an appointment with my doctor back in
Toronto, for August when I know I will be back in
Ontario. The last few years I have been up an down – sometimes enjoying more than three months without a ‘spell’, sometimes feeling crappy everyday but managing to exist, sometimes being hit with a debilitating spell unexpectedly on days when it is terribly inconvenient. I have tried being ‘drug free’ or taking my prescriptions religiously, I have tried not eating salt, I have tried meditating and crystal healing, I have visited naturopathic doctors and tried various remedies, and yet it seems that Meniere’s will simply do what it pleases. I will never stop searching for something that helps, because while I respect that I could suffer with something much worse than Meniere’s, and that it not a fatal condition – it is still something that I would not wish on my worst enemy.
Please feel free to contact me with questions, stories, thought or feedback on my Meniere’s musings. If you are reading this, and like I did, feel alone, frustrated and occasionally pretty hopeless, know that you are NOT alone. There are others like you, no matter who or where you are, you are NOT alone.
I've never heard of Meniere's Disease. I look forward to reading your blog.
ReplyDeleteThanks for reading!!! Hopefully my new post will explain a little more for you.
ReplyDeleteWow! I had no idea. This doesn't sound like fun at all. I look forward to reading your blog to maybe help someone out in the future. Thank you.
ReplyDeleteHi! Do you have an email address? I'm afraid I have MD and I would like to ask you some issues! Thanks!! my email is mayelar@hotmail.com from Mexico!
ReplyDeleteRegards!