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 : )