Superior canal dehiscence syndrome; more aptly described as stupendously crazy dizzy stuff.
I've been at it a little over a year and a half now. I find it to be one of the most irritating things that could have ever happened. After more than a year, I think I've experienced almost everything this mess can throw at me. Some days I am so close to normal, it seems as if I'm actually fooling the world to say I am disabled. Sure, I'm dizzy. But not so much I can't compensate for the earth's rotation most of the time. Sure I'm nauseous, but as long as I get to keep my food, I can usually deal with being a bit squeamish. And to be perfectly honest, about half my days are good enough that I can approximate normal.
Then there are those other days. I thought I knew what a headache was, until this mess came along. Now any change in the atmospheric pressure, whether brought about by a trip to the mountains or the passing of a weather system, will bring me to the point of tears. There is nothing to be done about it except serious pain medication and sleep. I don't think the sleep actually does anything to make the headache go away, but at least if I'm asleep, I don't realize how much I hurt. Recently, I discovered new vistas in headache pain -- thunderstorms. So now we have the unbelievable pressure of my brain attempting to burst out through any possible outlet in my head, but lighting then adds searing, screaming torment and the thunder makes me just want to die.
Another charming side effect of SCDS is hypersensitivity to noise. Someone yelling for example, will actually cause me to become so dizzy I will fall down. I cannot tolerate vacuum cleaners, blenders, loud television, constantly barking dogs, hammering, and on and on, the list is endless. The louder the noise, the more violent my reaction. If someone wants to completely destroy me, they need only to walk up behind me undetected and clap loudly next to one of my ears. The burglar alarm or smoke alarm in our home can instantly reduce me to a quivering mass of helplessness. This is a rather inconvenient little aspect, but as long as I can control the volume in my world, I can function almost normally. Now all I have to do is figure out how to turn down thunder.
Sure I walk like a drunk most of the time, but that doesn't really bother me. If people think I'm drunk, so what. If that was the worst part of this mess, I'd be thrilled. But then there are days like today. The weather is fine -- no weather fronts passing through. It's sunny and a little cool, but actually a pretty nice day. But today I don't walk like a drunk; today I am barely capable of walking. Today just sitting perfectly still in a chair makes me so dizzy I can't function. For some unknown reason, yesterday I started getting more and more nauseated as the day progressed. It's really not such a good idea to greet your husband when he comes through the door after a hard day at work by immediately covering your mouth and running for the bathroom. Oh, well. He knew the job was dangerous when he married me. I finally gave back the few bites I had managed to force down at lunchtime, took some medication to control my stomach, and went to bed even earlier than normal.
And, there are the totally weird side effects. I can hear everything that happens in my body. Everything!! Of course, I hear the gurgles and burbles of my stomach and digestive system, though I hear them when they are not audible to others. I can hear blood flowing through my veins and arteries. I hear my heart beat; many people can hear this at one time or another. I hear it always. I can hear my lungs expand and contract with each breath I take. I hear every joint as it moves. Some of them protest more loudly than others. I can even hear my eyes move in their sockets. It's a strange scritchy little noise. There is no way to turn off the cacauphony of noise.
Most days I can read (thank God, I would die if I couldn't). Today, unfortunately, I cannot read. My doctor thinks I am able to read because I only move my eyes, and therefore do not cause dizziness. Today, just being here is causing dizziness and reading is out of the question. I'm not happy. Typing is also a bit more arduous than normal, and proofreading is out of the question. Please forgive any misspellings or other errors you encounter in this post today.
So where am I in the "syndrome". Today, I feel as if I'm back at square one. With any luck, tomorrow I'll be back to relatively normal (a word I no longer take for granted). Isn't life a kick in the pants?
I've been at it a little over a year and a half now. I find it to be one of the most irritating things that could have ever happened. After more than a year, I think I've experienced almost everything this mess can throw at me. Some days I am so close to normal, it seems as if I'm actually fooling the world to say I am disabled. Sure, I'm dizzy. But not so much I can't compensate for the earth's rotation most of the time. Sure I'm nauseous, but as long as I get to keep my food, I can usually deal with being a bit squeamish. And to be perfectly honest, about half my days are good enough that I can approximate normal.
Then there are those other days. I thought I knew what a headache was, until this mess came along. Now any change in the atmospheric pressure, whether brought about by a trip to the mountains or the passing of a weather system, will bring me to the point of tears. There is nothing to be done about it except serious pain medication and sleep. I don't think the sleep actually does anything to make the headache go away, but at least if I'm asleep, I don't realize how much I hurt. Recently, I discovered new vistas in headache pain -- thunderstorms. So now we have the unbelievable pressure of my brain attempting to burst out through any possible outlet in my head, but lighting then adds searing, screaming torment and the thunder makes me just want to die.
Another charming side effect of SCDS is hypersensitivity to noise. Someone yelling for example, will actually cause me to become so dizzy I will fall down. I cannot tolerate vacuum cleaners, blenders, loud television, constantly barking dogs, hammering, and on and on, the list is endless. The louder the noise, the more violent my reaction. If someone wants to completely destroy me, they need only to walk up behind me undetected and clap loudly next to one of my ears. The burglar alarm or smoke alarm in our home can instantly reduce me to a quivering mass of helplessness. This is a rather inconvenient little aspect, but as long as I can control the volume in my world, I can function almost normally. Now all I have to do is figure out how to turn down thunder.
Sure I walk like a drunk most of the time, but that doesn't really bother me. If people think I'm drunk, so what. If that was the worst part of this mess, I'd be thrilled. But then there are days like today. The weather is fine -- no weather fronts passing through. It's sunny and a little cool, but actually a pretty nice day. But today I don't walk like a drunk; today I am barely capable of walking. Today just sitting perfectly still in a chair makes me so dizzy I can't function. For some unknown reason, yesterday I started getting more and more nauseated as the day progressed. It's really not such a good idea to greet your husband when he comes through the door after a hard day at work by immediately covering your mouth and running for the bathroom. Oh, well. He knew the job was dangerous when he married me. I finally gave back the few bites I had managed to force down at lunchtime, took some medication to control my stomach, and went to bed even earlier than normal.
And, there are the totally weird side effects. I can hear everything that happens in my body. Everything!! Of course, I hear the gurgles and burbles of my stomach and digestive system, though I hear them when they are not audible to others. I can hear blood flowing through my veins and arteries. I hear my heart beat; many people can hear this at one time or another. I hear it always. I can hear my lungs expand and contract with each breath I take. I hear every joint as it moves. Some of them protest more loudly than others. I can even hear my eyes move in their sockets. It's a strange scritchy little noise. There is no way to turn off the cacauphony of noise.
Most days I can read (thank God, I would die if I couldn't). Today, unfortunately, I cannot read. My doctor thinks I am able to read because I only move my eyes, and therefore do not cause dizziness. Today, just being here is causing dizziness and reading is out of the question. I'm not happy. Typing is also a bit more arduous than normal, and proofreading is out of the question. Please forgive any misspellings or other errors you encounter in this post today.
So where am I in the "syndrome". Today, I feel as if I'm back at square one. With any luck, tomorrow I'll be back to relatively normal (a word I no longer take for granted). Isn't life a kick in the pants?
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