Still Spinning

Getting out More

2010-07-16T11:03:00.000-07:00

I wonder what it would be like to be able to get out more. I really envy the people in my life that get to go any where they want. Just get on a plane and travel or drive on a road trip. People constantly tell me me you need to "get out more".
I want nothing more than to do that. But that just isn't my reality. Even doing the most simple of tasks and errands are becoming a battle field for me. Grocery stores pose an ever growing challenge. Walking down the aisles and turning my head causes violent spinning. I am left with a sense of anger and fear.
There are times when I can barely walk the few feet to my laundry room or garbage shed. Why I wonder is this still happening to me after over 35 years. In my search for answers I am super frustrated.
The doctors I see don't really know how to offer an treatment that I can rely on to help my symptoms. It's always more pills, more pills. But no answers. Meanwhile my attacks are getting worse. I spend way more time being sick, than I do being well which means I don't get to do anything fun anymore. I might get 4 to 6 days of wellness out of the month. The rest of the time I am in and out of a dizzy spell, that keeps me from doing any real activity.
There must be answers out there I just don't know where to look.....

[Caption]

No More Meds

2010-04-26T11:42:00.000-07:00

I am finally off the last medications that my doctor prescribed. I can't exactly say that it was helping or hurting my overall problems with dizziness. The one thing I did realize was that the side effects where just too much. I had to make a decision about my overall health. I don't really feel bad about that, what I feel bad about is that now my doctor feels as though there is nothing else she can do for me.
If I'm not willing to take a pill then I am pretty much left on my own to wade through this illness without any real answers. I've decided to try vestibular rehabilitation. Something I have nether done nor have any real knowledge of. But I've tried everything else so trying this couldn't hurt one bit.
Because this is such a long standing problem for me. I really don't know how I shall proceed next. Looking into Eastern treatments will also be something I am exploring. I don't think at this point I will ever find a cure. But it would be nice to find something that will offer me some relief.

Balance, and Inner Ear Problems and the Value of Chiropractic Care

2009-08-05T12:10:00.000-07:00

This article has some basic information on the different types of dizziness. Also covers forms of treatment available. There is a nice video attached as well.

http://help2health.co.cc/balance-inner-ear-problems-and-the-value-of-chiropractic-care/

Starting to feel better from my attack from last week. Hopefully it is a short one and I can get on with the things I have to do in life. Never can tell I just play it by ear and live day by day with what god and my health give me.

Riding the Wave Again..

2009-07-30T16:23:00.000-07:00

I hate when I start to get the pressure in my head and it starts to get harder for me to walk around. I have to lean to the left more which kind of sucks. Not sure what that is about exactly and I to squint my left eye a lot when I walk it helps me steady my self. It's like inside my brain or eyes there's an internal roller coaster going on that I don't have any control of.

Seeing the world travel back and fourth is still such a mystery after all these years. My medication doesn't really help my illness. Nor take my symptoms away. When it comes it just comes. I ride it's wave no matter what. So the pressure is back which means soon I will be back to spinning violently in a week or so. Unable to leave my home and bed ridden. The ebb and flow of my dizziness is like clock work that is something that can be counted on. It is very regular and very methodical. I try to explain this to all the doctors I have seen over the past 34 years but it seems to go in one ear and out the other.

It's hard not to get lost in the never ending sea of pills and medications and doctors that I swim around in. I surface from all of this with no real answers to what is the real cause to what is going on in my brain. Or what right dosage is gonna work so I can get my attacks to a manageable level so I can work again.

Ups and Downs...

2009-07-25T14:00:00.001-07:00

Its been awhile since I posted but I've been in good spirits. I found a new doctor at a new hospital that I thought was a great facility that was giving me some good options for my balance disorder. I am on a new medication (Topomax) with a supliment (Magnesium) I can't say that they have helped or hurt. I still get dizzy and sick. My illness comes and goes at its leisure. But there is still a bit of hope and I do feel a bit better and it doesn't seem to be lasting as long as it normally does.

I just have to take a lot of pills throughout the day. I still have to start and stop my activities and my life. But I try and focus and be thankful for the things I do get to do on occasion.

Times are hard right now and I am glad I have a freaking roof over my head and food in my fridge period. I still do a lot of research on the internet for new studies about balance disorders and vertigo hoping to find some answers because I can't give up the search for some kind of cure or relief.

I will try to post more often and when I find articles on balance and vertigo and dizziness, I will share... Peace

New Doctor New Hope

2009-01-20T08:12:00.000-08:00

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.

Something To Ponder

2008-09-25T14:22:00.000-07:00

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.

Dizziness Returns after 3 weeks

2008-07-08T10:57:00.000-07:00

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.

Tough Night

2008-07-06T11:39:00.000-07:00

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.

Yup, Still Spinning

2008-05-21T10:01:00.001-07:00

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.

Rough Times

2008-05-19T12:24:00.000-07:00

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!!!

Holding Pattern

2008-02-27T07:35:00.000-08:00

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.

A Blog a Day.....

2008-01-29T14:48:00.000-08:00

It's been quite a decent stretch since I've written anything in this blog. That wasn't my intention I assure you, life just can be brutal and overwhelming at times. I've spent the last 5 to 6 months dealing with alot more issues than just my balance disorder. It was hard for me to get back to the business of sharing.

I've actually gotten some major things accomplished despite being dizzy off and on. I was able to finally get my drivers license and pass my driving test. A major accomplishment considering it took me close to 2 years to get the DMV to grant me permission even with a doctor's approval. When I finally started driving I felt like I was finally getting a taste of independence.

Certain things that the rest of the world takes for granted I am just now starting to get a chance to experience. So in a way it is an exciting time for me. No matter how my health is going I am really trying to remain positive and not let it get me down. It can be a very stressful existence becoming ill every couple of weeks, but I am determined to make some kind of positive experience out of this, and this blog helps that process.

In the past months I've had to put my elderly parent in a facility,face the possibility that my home will go into forclosure, and finding a place to live all at the same time. Normally under that much stress my illness would be flaring up. But I am learning not stress about things that are out of my control. I will write more and share more as it happens.

Giving up my life on a regular basis

2007-09-07T11:26:00.000-07:00

It can be very upsetting and challenging to have to give up your life on a regular basis. This is what I am doing at the moment. I am in the middle of a very long bout of vertigo, that started last month. Normally my attacks rotate every month or but never linger longer than a week or so.

During this time I am completely stuck inside and have trouble leaving my home. It seems like any slight movement or sound will bring on an attack. My latest diagnosis is Meniere's Disease, before that it was MAV (Migraine Associated Vertigo) Both came with a set of medications that I take religiously but never really show strong signs of improvement. I took Neurontin for almost 5 years and it didn't do much. My current medication is Acetazolomide which I thought was helping until last month. I've been on this one for about a year now. The problem with all of this is I never suffer from all the the exact symptoms of those disorders so it is extremely hard to pinpoint. So it is like a needle in a haystack. I do have sensitivity to light and sound but only when I am sick, I have violet vomiting spells that last for 8 to 10 hours. During these times I am totally bedridden.

Quite honestly I try and have faith in doctors and their beliefs about my health but the true is and pardon my french they don't know shit.

Lately it's been hardest going up and down the stairs in my home. It seems like when I look up as I walking something just snaps in my head and make me start to spin. All I can do is hold the railing and close my eyes and keep walking till I get to the top. Also it is becoming harder to sit in chairs or lay down in bed when I am like this. Something about the height of the bed or chair sets my head spinning and I immediately have to sit on the floor. So for the past month I have been sleeping on the floor.

I normally have an air mattress set up and ready to go for such occasions, because I am always if nothing else, prepared for when I get dizzy. But my air mattress has a hole in it so it is useless. So now I am sleeping on the floor and my back is killing me. I keep thinking to myself maybe my bed is too high or something. Like I'm climbing on a ladder to get into bed every night. but this is how a chronically ill person thinks. Hopefully my attack will end soon, and I can get on with living a somewhat normal life.

Day One

2007-08-27T08:13:00.000-07:00

Well actually it isn't really day one, I just thought that title would make sense. This is my blog I've set up so that I can record my daily,weekly or monthly thoughts on living a life with a chronic balance disorder. "Still Spinning" is pretty much how I live my life. I amble from day to day, week to week, month to month, trying to fit a "normal life" into one filled with illness. But let me try to begin from the beginning. Which would be like around the age of 3 0r 4.
I don't remember exactly how it happened or what I was doing, I just remember the feeling I had at that age. The shear panic of spinning violently and uncontrollably and not being able to get my bearings or focus my eyes on anything. I think I held onto the pillow and just lay there spinning and then I started to vomit. This went on for quite awhile, for at least hours. The I slowly began to snap out of it and I felt better and became completely normal again. This was my first attack. My parents made an appointment with my pediatrician trying to describe my symptoms and what they saw me going through. The doctor just said I would grow out of it and sent us on our way.
This went on my entire childhood. I would get dizzy and vomit and get taken to doctors and they would say the same thing. She will grow out of it. Or as I reached pre adolescense my parents and doctor's started to believe that I was faking it. So I started having to see a Psychologist. Even that doctor didn't believe what was happening to me. The came the pills and tests. I have been prescribed every medication none to man that is supposed to treat vertigo. I have had CAT scans, MRI scans, EEG test, Caloric Tests, all throughout my entire life and yet there is nothing. No tumor in my brain, no disease in my inner ear, nothing.
So as I progressed into my teen age years, my health seem to get worse. I would miss alot of school and my parents would have to go and get my assignments from teachers in order for me to pass my classes. As I graduated high school and went on to college the situation only seem to get worse. I was getting sick alot more often and was missing classes left and right. Still going to doctors and getting the say answers I have always gotten. During these times I have always tried to hold down jobs and work to pay my way. Sometimes I succeed in this quest and sometimes I fail. Because of this situation I battle feelings of worthlessness and depression. I try to do the best I can with what God has given me , but yet I feel like I am losing the battle. I could write for ages on how this has affected my mentally, physically and emotionally. But that is for a later time. For now I would like to say welcome to my blog... and I look forward to sharing with others my story of how after 33 years I am "Still Spinning".