Last Monday I got went to see yet another doctor about my unexplained dizzy spells. No matter how many times I go through this I always find it a source of apprehension because I have to spend ages giving 30 plus years of history. So with this new doctor I did just that. Described my symptoms, how severe they have gotten over time, how many medications I have been on over the years, all the test I have undergone, all the different diagnosis there have been.
After that she gave me a full examination, that tested my ears and eyes and my coordination, all of which is normal. Then I she suggested that she agrees with one of my previous doctors that I might have MAV, which is Migraine Associated Vertigo. And I got prescribed yet another medication for that illness. Now I am taking something called Topomax. So far I can't tell if it is doing anything other than making me have more extended symptoms of my illness.
But only time will tell. The one thing I'm not going to do that I have done in the past is stick with something that is clearly not working, and trust that the doctors no what they are doing. I want to have trust in the process, but I just don't anymore. I have been failed by it far to many times. Meanwhile my life is passing me by with very little answers. Yet I am being made to live with this burden and it is very hard.
Balance Videos
Tuesday, January 20, 2009
Thursday, September 25, 2008
Something To Ponder
Sometimes I think to myself who am I to advise or instill hope into others about how to live with vertigo. I am not even remotely close to have anything about this illness figured out. All I know is that it comes every month like clockwork. To be honest it is more regular than my freaking periods each month. I can count on it to appear around the same time every month without fail.
This being said, what is a person to do? You try and live bits and pieces of your life, but mostly you are just waiting till the next attack comes. Your world becomes consumed with how much you can accomplish and get done with only a few days or weeks of decent health. Then you get thrown back into the cycle of being sick again.
You take your medications and submit yourself to more and more test. You travel to doctor after doctor hoping that this time they will be an accurate diagnosis. Still as you wait for these things, your attacks get worse and you still must struggle with the burden of having an unexplained illness.
Meanwhile, it feels like you are a passenger watching your life and dreams pass you by. I can’t count how many times in 34 years of living with this that, I’ve had to start and stop a task, over and over again. The whole time feeling useless because I accomplish very little. And the things I do accomplish aren’t enough because I don’t ever get to enjoy them to the fullest.
This being said, what is a person to do? You try and live bits and pieces of your life, but mostly you are just waiting till the next attack comes. Your world becomes consumed with how much you can accomplish and get done with only a few days or weeks of decent health. Then you get thrown back into the cycle of being sick again.
You take your medications and submit yourself to more and more test. You travel to doctor after doctor hoping that this time they will be an accurate diagnosis. Still as you wait for these things, your attacks get worse and you still must struggle with the burden of having an unexplained illness.
Meanwhile, it feels like you are a passenger watching your life and dreams pass you by. I can’t count how many times in 34 years of living with this that, I’ve had to start and stop a task, over and over again. The whole time feeling useless because I accomplish very little. And the things I do accomplish aren’t enough because I don’t ever get to enjoy them to the fullest.
Tuesday, July 8, 2008
Dizziness Returns after 3 weeks
How strange my illness reacts at night time. I was able to white nuckle it through the last two nights by laying on the floor. That didn't work so well for me last night. In rough times like these, I pull out my air mattress and sleep on that. My bed doesn't feel as comfortable and isn't low to the floor.
I usually have to lay on my right side. I don't know why that is. Any movement towards the left side makes me violently dizzy. So mostly I just lay very still on my air mattress for long periods of time. Not being able to move and get up for long periods of time sucks.
Your thankful for the little things, like being able to walk down the hall and sit on the toilet long enough to take a piss. Or standing up long enough to grab a few snacks from the kitchen.
Each day you hope for a little more freedom and the ability to do a bit more. Like yesterday I wasn't able to sit at my computer for very long. But today I am able to knuckle through sitting here long enough for this entry. Perhaps tomorrow I will be able to open my front door and walk to the garbage dumpster and to my mailbox.
When I'm in this state I just don't have any idea how long it will be before I'm back to normal.
I usually have to lay on my right side. I don't know why that is. Any movement towards the left side makes me violently dizzy. So mostly I just lay very still on my air mattress for long periods of time. Not being able to move and get up for long periods of time sucks.
Your thankful for the little things, like being able to walk down the hall and sit on the toilet long enough to take a piss. Or standing up long enough to grab a few snacks from the kitchen.
Each day you hope for a little more freedom and the ability to do a bit more. Like yesterday I wasn't able to sit at my computer for very long. But today I am able to knuckle through sitting here long enough for this entry. Perhaps tomorrow I will be able to open my front door and walk to the garbage dumpster and to my mailbox.
When I'm in this state I just don't have any idea how long it will be before I'm back to normal.
Sunday, July 6, 2008
Tough Night
Had a very rough night last night. Woke up during the night feeling very unstable and dizzy. I immediately had to lay down on the floor. Something I have to do when I get very dizzy, the bed is just to uncomfortable for me to lay in.
Every time I closed my eyes to nod off again to get some sleep, immediately I would awake with a spinning sensation that stopped me from sleeping. This is the part of my disorder I really don't like much. Have to sleep in a little shifts all throughout the night. Never really getting a full night's rest. I often wonder why this happens and how come it always affects my sleeping and to some extent my dreams as well.
I can be dreaming and if I start dreaming about flying or spinning or traveling fast. I start to get dizzy in my dream and awake to a full blown attack. This has been going on since I was a small child. Sometimes I get so paranoid, I don't want to fall asleep for fear of waking up dizzy. I will start seeing a new doctor later on this month, so maybe they will be some hope for some answers. I also am back to doing research about my illness hoping to find new information or resources.
Every time I closed my eyes to nod off again to get some sleep, immediately I would awake with a spinning sensation that stopped me from sleeping. This is the part of my disorder I really don't like much. Have to sleep in a little shifts all throughout the night. Never really getting a full night's rest. I often wonder why this happens and how come it always affects my sleeping and to some extent my dreams as well.
I can be dreaming and if I start dreaming about flying or spinning or traveling fast. I start to get dizzy in my dream and awake to a full blown attack. This has been going on since I was a small child. Sometimes I get so paranoid, I don't want to fall asleep for fear of waking up dizzy. I will start seeing a new doctor later on this month, so maybe they will be some hope for some answers. I also am back to doing research about my illness hoping to find new information or resources.
Wednesday, May 21, 2008
Yup, Still Spinning
Well woke up this morning with that heavy pressure feeling in my head. Been that way all week and not going away. Seems like everyday I'm feeling some form of unstableness and my dizzy spells aren't going away liked they used to.
In the month of May I have had some form of spinning and dizziness all month. The same for April. I had about 7 days of wellness last month were I felt completely normal. This is really starting to scare me. When I get this ill, my life basically stops until I can get back to living again. Imagine stopping your normal life for a month at a time on a regular basis. I try to stay positive about all of this but it is very very hard.
If nothing this disorder is teaching me patience whether I like it or not. I have to re-approach how I look at life and how I do things and at times it is enough to make you rip your hair out. But that is tomorrow's post.... Just trying to write daily notes on how I feel and how I cope with a chronic balance disorder.
In the month of May I have had some form of spinning and dizziness all month. The same for April. I had about 7 days of wellness last month were I felt completely normal. This is really starting to scare me. When I get this ill, my life basically stops until I can get back to living again. Imagine stopping your normal life for a month at a time on a regular basis. I try to stay positive about all of this but it is very very hard.
If nothing this disorder is teaching me patience whether I like it or not. I have to re-approach how I look at life and how I do things and at times it is enough to make you rip your hair out. But that is tomorrow's post.... Just trying to write daily notes on how I feel and how I cope with a chronic balance disorder.
Monday, May 19, 2008
Rough Times
When I am gone for awhile it usually indicates that life is throwing me some serious curve balls. The last 6 or 7 months have been absolutely a time of stress and worry and pain. I learned late last year that my home was going into foreclosure and that I would have to place my elderly parent in to a nursing facility. And that chronically ill or not I would now need to find a place to live on my disability income which is very small.
Then in March my father passed away, and I had to move all in the same month. Incredibly stressful time. Needless to say, my dizzy spells have been some of the worst attacks in recent years. I am constantly sick and feeling unstable all the times. I am not sure if the stress of my life is taking hold of my illness and making it worse or if something else is going on.
I am a creature of habit and I keep a log of dates and notes when I get sick. My calendar for the last 3 months has been filled with nothing but illness. With very little times of wellness in between. This makes me a little worried and scared. I'd go to the doctor but since he is unsure what is really wrong with me, I question whether or not that is even worth the trip. He would just try to increase my medication, which is something I am not comfortable with.
So am I back to searching the Internet for resources and any new information about this horrible affliction. Some times I find others who are worse off than me and that strangely gives me hope. It can be isolating to live like this, when there aren't others immediately around you who really know what it is like.
So when I find another person it's like thank god, I'm not the only one!!!
Then in March my father passed away, and I had to move all in the same month. Incredibly stressful time. Needless to say, my dizzy spells have been some of the worst attacks in recent years. I am constantly sick and feeling unstable all the times. I am not sure if the stress of my life is taking hold of my illness and making it worse or if something else is going on.
I am a creature of habit and I keep a log of dates and notes when I get sick. My calendar for the last 3 months has been filled with nothing but illness. With very little times of wellness in between. This makes me a little worried and scared. I'd go to the doctor but since he is unsure what is really wrong with me, I question whether or not that is even worth the trip. He would just try to increase my medication, which is something I am not comfortable with.
So am I back to searching the Internet for resources and any new information about this horrible affliction. Some times I find others who are worse off than me and that strangely gives me hope. It can be isolating to live like this, when there aren't others immediately around you who really know what it is like.
So when I find another person it's like thank god, I'm not the only one!!!
Wednesday, February 27, 2008
Holding Pattern
I was going on a good streak the last few months. I knew it would come to an end sooner or later. I started feeling dizzy last weekend and it has gotten progressively worse since then. It started with me getting that heavy pressure type feeling in my head when I got up in the morning. Followed by an overall unstable feeling throughout the day.
Then when I try and do something more strenuous like walk or jog outside or even ride or drive in a car I immediately get very dizzy. This is the most frustrating part of living with this illness. The times you have to go through life only able to live half of it. You want to be a full participant but something out of your control stops you from living your best life now, so you wait until you can.
The other drastic part of my illness is I have trouble sleeping in a bed or on a couch because the dizziness comes in waves and I feel like I'm falling. So I end up having to sleep on the floor because it offers me the most stability. This being said my back is killing me because of sleeping on the floor for the last 4 days.
I still take my medication Acetazolamide, like a trooper but once I am experiencing an attack the medication does little to quell my symptoms. During this time I try and think back to when I was well and figure out what I was doing right. Was I exercising regularly, watching my intake of salt and caffeine? The one thing that is a big indicator that is very important to control is stress. I try very hard not to get stressed out because that can really make my head spin. So right now I'm in a holding pattern just kind of waiting till I'm well enough to get back to my life.
Then when I try and do something more strenuous like walk or jog outside or even ride or drive in a car I immediately get very dizzy. This is the most frustrating part of living with this illness. The times you have to go through life only able to live half of it. You want to be a full participant but something out of your control stops you from living your best life now, so you wait until you can.
The other drastic part of my illness is I have trouble sleeping in a bed or on a couch because the dizziness comes in waves and I feel like I'm falling. So I end up having to sleep on the floor because it offers me the most stability. This being said my back is killing me because of sleeping on the floor for the last 4 days.
I still take my medication Acetazolamide, like a trooper but once I am experiencing an attack the medication does little to quell my symptoms. During this time I try and think back to when I was well and figure out what I was doing right. Was I exercising regularly, watching my intake of salt and caffeine? The one thing that is a big indicator that is very important to control is stress. I try very hard not to get stressed out because that can really make my head spin. So right now I'm in a holding pattern just kind of waiting till I'm well enough to get back to my life.
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