Spring

So I guess I haven't been a very good blogger!!

I have been doing well lately - have not had a spell in almost two weeks now (knock on wood!!). I have been doing my best to get a good amount of rest, and to eat well, things which I know help me, even if just psychologically. I have also been doing yoga almost everyday, even if only a few relaxing poses, and have been on a run outside - even though there is still snow on the ground. It feels good to get out and start to feel healthy again - but I do live in a bit of fear of when my next spell will happen. They can be so unpredictable, and can throw off even the healthiest regime.

Stay tuned.

Today is a 'Good Day'

One of the most frustrating parts of Meniere’s is the lack of specific definitions, and how it differently affects each sufferer.

When I am in a situation where I need to tell someone about my Meniere’s, I usually just tell them I have an ‘inner ear thing’. Only when I need to be more forthcoming and provide more information, to I actually use the title Meniere’s – why? Because no one has heard of Meniere’s, they don’t know what it is or how it affects me – it’s a lot easier to say ‘I get dizzy spells’, or ‘I have an inner ear thing’.

The main pitfall of this is that people naturally attempt to offer suggestions or stories about their sister’s friend’s uncle’s dog walker who had dizzy spells and managed to solve them by specific stretches/certain pills/eating carrots/something else that either sounds ridiculous to me, or that I’ve already tried. Not that I don’t appreciate people trying to help, but this isn’t your run of the mill dizzy spell.

For those who may not know… Meniere’s is an idiopathic disease, meaning that doctor’s don’t know what causes it (a source of much frustration for those of us diagnosed with it). It affects the ear(s), and many other bodily systems. It causes severe vertigo, ringing in the ears, hearing loss, severe nausea, headaches and more. Some people will have ‘attacks’ that last days or weeks, some just hours. For me, a spell typically lasts 8-12 hours, during which I am dizzy or simply off balance at best, or have extreme vertigo at worst. Along with this, I get very bloated and nauseous (I have had days where I throw up every 20-40 minutes, all day) – the type of nausea does not discriminate, as when I am having a spell I can consume ginger-ale and crackers, or a steak dinner, or simply water, and I’ll be throwing up no matter what.

Everyone spell is different, as sometimes I get VERY dizzy (I have at times had to ask my family or someone with me if the room is ACTUALLY spinning – as I cannot seem to make it stop going in circles), and sometimes the sensation is more of a headache and feeling of being off balance. Sometimes I will throw up countless times, sometimes only once, or not at all. I am very lucky in that I do not get much ringing in my ears, but I notice that I hear more non-noise in my ‘bad ear’ as I get older. I also have a constant loss of hearing in my right (‘bad’) ear. Meniere’s typically affect only one ear, at least at first, but can affect both (this is termed bi-lateral Meniere’s). I get my spells a few times a months, and can be debilitated with them for a few hours, or a couple of days. I have at times gone for 3-4 months without a spell, and at other times had them once a week for several weeks on end.

Some people with this condition live with loud ringing in their ears all day everyday, some have complete hearing loss, some are dizzy more often than not. I consider myself very lucky to not be one of those people, and as I try to remind myself when I am feeling sick and low – it could always be worse.

I have just come off a bad stretch, two weeks in a row when I had to miss 2 days of work due to my spells. Last week I 'got to' work all five days, and this week is going okay so far for me. I did have a cold, which always seems to throw off my head, and caused me to have a spell with extreme dizziness. I have been taking a weekly yoga class, which helps me to relax, which I try to tell myself keeps my spells at bay. Of course there are no guarantees, a spell could sneak up on me at any time – but I take it one day at a time, and today is a good day, so far : )

Welcome!

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.