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Equalibrium
The question that I have is about my equalibrium, lately I have been feeling off balance and last week walking funny...is this a problem that has to do with Chiari? The dizzieness is severe and I can feel a presssure in my ears...even the inner ear bone hurts that leads to my jawbone... this has never happened before... bcuz it is really bad this time round...went to ER they gave me nausea and dizziness medication that does not seem to help...will srgery be the only way to correct this?
I'm that way daily, it's just a matter of how BAD it is that day. When it's real bad my head just bounces back and fourth uncontrollably and I can't get out of bed. :/
Like somebody else said this is my biggest issue. Headache is second. Unfortunately my head hurts WORSE when I lay down.
My right foot "sticks out". It jsut kind of points outward. I always feel like I'm walking on ground that's tilted and it makes me veer to the right. I have to try to correct it and trying to correct it makes me feel more off balance. It helps me to walk with my head down looking at the ground. Any hallways or narrow spaces make it 100X worse.
I also get ear/ jaw pain. Again this is mostly right sided.
I know the medicine you're talking about it begins with an M. Does nothing but make me tired. :/
Like somebody else said this is my biggest issue. Headache is second. Unfortunately my head hurts WORSE when I lay down.
My right foot "sticks out". It jsut kind of points outward. I always feel like I'm walking on ground that's tilted and it makes me veer to the right. I have to try to correct it and trying to correct it makes me feel more off balance. It helps me to walk with my head down looking at the ground. Any hallways or narrow spaces make it 100X worse.
I also get ear/ jaw pain. Again this is mostly right sided.
I know the medicine you're talking about it begins with an M. Does nothing but make me tired. :/
It is nice to know we are not suffering alone. My last "funny" situation was while visiting a science museum. We had to climb 2 flgihts of double stairs with glass sides and the hand rails were too far apart to hold on to both sides. I did the first flgiht fairly well HAHA but the last one got to me. When I was about 5 steps from the top I had to throw my purse up to the top and crawl up the last steps. I thought I would never make it and just wanted to kiss the ground when I got to the top (of course about 10 feet away from the steps). I guess we must just keep plugging away. I am sure I entertained a lot of people. Must be the koolaid!!
I love hearing other people's stories (not that I love that you have to suffer). I tell people all the time that I would fail a sobriety test completely sober! Recently my husband went shopping with me at a very breakable store, I didn't even realize that I was headed straight for a shelf lined with breakables until I felt his arm under my elbow steering me away!! I am very lucky to have him. Over the years he has learned to recognize facial expressions and body languages to give him clues when dizziness or black outs are setting in! When I was at the NL appt last week, they asked me to stand up from a sitting position and of course I stood up and swayed from disequilibrium. My hubby immediately put his arm out to steady me and the doctor told him not to touch me!!! When they were testing my eyes (over and over and over and over trying to figure out why I was seeing double tracking to the left), I asked for a glass of water because the nausea & dizziness that set in was so intense, my hubby told them at the same time to give me a break because he could tell I was getting nauseaus!
Oh, and Selma...those checkered floors are quite the doozies!!!!
Oh, and Selma...those checkered floors are quite the doozies!!!!
When I am standing up and having a conversation with someone I start to sway. So I shift my position and nod my head etc, try to make all the normal motions I can so hopefully people won't notice me swaying a little and I can't focus on their eyes. It's weird and embarassing. I know its not related to any meds because it happens even when I don't take anything. Wish it would go away.
Disequlibrium and vertigo are one of my biggest problems. Sometimes i just feel like my movements are exaggerated... people tell me I look drunk.
I only have a 2mm herniation and was told there was some CSF blockage, but haven't been given an offical dx of Chiari... because I don't have severe headaches.
Even when I am not having an "episode" I still am very clumsy and bump into things (walls, tables, people, everything... lol). I have bruises all over the place!
Oh and the one thing that really messes with my head.... escalators!
I only have a 2mm herniation and was told there was some CSF blockage, but haven't been given an offical dx of Chiari... because I don't have severe headaches.
Even when I am not having an "episode" I still am very clumsy and bump into things (walls, tables, people, everything... lol). I have bruises all over the place!
Oh and the one thing that really messes with my head.... escalators!
I have suffered with balance issues for 10 years now, this is what led me onto the chiari journey 3 yrs ago, the alance got so bad I fell lots,could not drive and still feel as if i permanantly sway. I very often fall into things or bump into things so have huge bruises all the time.
Last week I was doing my grocery shopping with my DH as if I go alone all the bending and stretching makes me feel terrible, anyway bent to get pasta off shelf lost balance and ended up in the racking with the pasta, lots of strange looks from the shoppers around me and now have huge bruise on forearm where DH tried to stop me from falling.
yes florescent lights are bad for me also and checks and stripes make me feel bad, my DD has stripped shirt and when I iron it I feel drunk!!!!!
My ears sort of pop, then my hearing goes muffled, its like I am underwater hearing people talk to me.
And all this alongside pain etc etc from what they class as a developmental condition I have had from birth and in there radiologist report class as very mild ectopia, damn would hate it to be severe ectopia!!!!!!!
Last week I was doing my grocery shopping with my DH as if I go alone all the bending and stretching makes me feel terrible, anyway bent to get pasta off shelf lost balance and ended up in the racking with the pasta, lots of strange looks from the shoppers around me and now have huge bruise on forearm where DH tried to stop me from falling.
yes florescent lights are bad for me also and checks and stripes make me feel bad, my DD has stripped shirt and when I iron it I feel drunk!!!!!
My ears sort of pop, then my hearing goes muffled, its like I am underwater hearing people talk to me.
And all this alongside pain etc etc from what they class as a developmental condition I have had from birth and in there radiologist report class as very mild ectopia, damn would hate it to be severe ectopia!!!!!!!
I AGREE 100% with the florescent lights. It is so bad that I leave my window to my office open and turn off the lights. It TRULY helps. Now, if I could just get off this computer...winnk!
COMMUNITY LEADER
Hi...sorry u r not feeling well...the vertigo and imbalance issues r no fun especially when they make u sooooooo nauseated u vomit....I had one bout of vertigo for 2 weeks non stop....ugh.
Even just the balance issues with out the vertigo can be diff to deal with...every time u stoop and try to get back up, or turn around suddenly....u can lose balance...also uneven surfaces like walking across the lawn.
Keep in mind that darkened rooms as well as black and white checkerboard floors can also knock u for a loop.
I also noticed that florescent lighting can also affect us...it can cause a strange sensation in ur head and I get nauseated too.
These r some things that did correct some after surgery for me, but I still have some of it as I do have a few other issues going on.
"selma"
Even just the balance issues with out the vertigo can be diff to deal with...every time u stoop and try to get back up, or turn around suddenly....u can lose balance...also uneven surfaces like walking across the lawn.
Keep in mind that darkened rooms as well as black and white checkerboard floors can also knock u for a loop.
I also noticed that florescent lighting can also affect us...it can cause a strange sensation in ur head and I get nauseated too.
These r some things that did correct some after surgery for me, but I still have some of it as I do have a few other issues going on.
"selma"
Unfortunately, all that sounds familiar...I would get the dizzy drunk feeling and be walking wobbly.
The pain you describe is familiar too...the pressure in the ears is common for most of us and I get the same jawbone pain you describe (along with facial pain). Usually all this starts for me after I start to feel an aching at the back of my head.
It is probably good that you went to the ER b/c this will all be documented. Since I believe you have already had the PFD surgery..whether another surgery will correct this or not, will be up to what the NS finds. I have to say that I feel all of this post op too but I had it b4 as well so I guess that's the big concern for you, if this is coming on now after being decompressed.
I really hope that you find some answers soon!
Carolyn
The pain you describe is familiar too...the pressure in the ears is common for most of us and I get the same jawbone pain you describe (along with facial pain). Usually all this starts for me after I start to feel an aching at the back of my head.
It is probably good that you went to the ER b/c this will all be documented. Since I believe you have already had the PFD surgery..whether another surgery will correct this or not, will be up to what the NS finds. I have to say that I feel all of this post op too but I had it b4 as well so I guess that's the big concern for you, if this is coming on now after being decompressed.
I really hope that you find some answers soon!
Carolyn
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