Walking like a drunk....lol

[mindyandy]

Just trying to keep in good spirits by posting how my walk is like a drinking walk. I find myself having to concentrate to walk a straight line. My shoulder always bumps the door jams. Night is horrible.  Lol I find it funny. I don't have to drink to feel drunk.
any funny balance stories?

[TJ]

You are so correct about walking.  Many of us myself included could not walk a straight line if your life depended on it.  In the dark it is worse because believe it or not your eyes are part of the balance system.  So if you can't see it throws off your balance.  The other night I turned to quickly and fell on the floor.  My Grand daughter just yelled out Grandpa fell again!  It is not a habit, but I have fallen 4 times in two years.

TJ

[JLR]

OMG! Me too. It has gotten a lot better..there was a time when my husband and I would take a nice long walk on the streets of Manhattan, as crowded as they are, and every few feet he would put me back on track as I would be swaying all other the place. Although there are many mornings, as I am walking to my car, that I am still swaying like crazy and think "the neighbors are going to think I'm drinking my breakfast"  but on a serious side I have seen many posts on this and most are from the CK gang. My side effects have lessened ( 1 year post CK) but they still pop up. Most current is my inability to put a sentence together or even to remember what I was going to say in the first place. I really have to think about the word placement. Hoping all this gets way better.  Happy Holidays and continued Good Health to all in the New Year.  JLR

[mindyandy]

Thank you for chiming in. JRL I agree about the whole word finding thing. I find myself feeling like I'm just not as smart as I used to be. I know that's not true but sometimes I feel that way.
Glad to hear other people's balance stories 

[Tod]

I was unhappy enough about the Drunkard's Walk, that I got a letter from my neurosurgeon documenting that I have a brain tumor resulting in specific issues (balance issues, SSD, and other things) and I keep a copy in my truck in the off chance that an officer sees me staggering through a parking lot in the dark.

In the first months of recovery, if I closed my eyes while standing, I fell over immediately. This is not uncommon. In our vestibular system is impaired, we have to learn to compensate, and much of that is visually. Within six months I was much better.

-Tod

[teripo]

This is just what I was looking for,as now I have had balance issues and dizzy the last 2 days and one night when I stayed up late.I havent gotten treatment since I found out 6/2011.But now I will because I am scared that I will stay this way.Could that be true I am so frightened,this is worse than deafness!

[JLR]

Hi Teripo, I'm guessing its all in the process of healing from the radiation.  Even though CK is low dose and it is fractionated...there is no way the radiation could'nt affect us in some way.  As it took the AN to grow so slowly ( in my case it was over 10years) it will take a bit of time for the effects of the radiation to leave our bodies. Stay strong! JLR

[chloes mema]

Glad I'm not the only one walking like a drunk and I haven't had any surgery or radiation!  I did have Vestibular Testing Tuesday which did NOT  go well for me.  I got so sick I couldn't finish the test.  Took me about 8 hours before I felt slightly normal again but since that test I've had vertigo which I didn't have before & imbalance is way worse.  Doctor's office finally returned my calls & said it's not the test it's the tumor (stupid) & should subside in a few days or a few weeks.  Thanks, I'll be seeing the doctor in a week.  Any way, the past few days I noticed that when I turn a corner I keep going & almost bumping into walls & door jams.  Getting out of the car is bad too.  I did get some Sea-Bands those seem to help, maybe purely psychological though.  I like the idea of a letter because I thought the same thing if I were stopped it could be embarrassing.

Karen

[frenchjoey]

I don't have to drink to feel drunk.

I would say "I can drink I won't feel any drunker (is this correct English?)"
Don't get me wrong I never used to drink because the slightest drop of alcohol would really trigger bouts of dizziness, now I can enjoy a glass of champagne, it doesn't make any difference at all! 

I love this thread!
Joey

[PaulW]

Very interesting.

"Most current is my inability to put a sentence together or even to remember what I was going to say in the first place. I really have to think about the word placement"

I had this before treatment and its to do with a damaged balance system.

Read this. Very interesting, and it explains most of the problems that we have.

http://www.vestibular.org/vestibular-disorders/symptoms.php

One of the "advantages??" of surgery is that they will cut the vestibular nerve to reduce vestibular problems.
We get to keep ours, but at times it causes us problems as the tumour swells or shrinks.

If you feel, you have somehow been short changed by having a half functioning balance nerve, Doctors can inject Gentamycin into the balance nerve to kill it. Not a common procedure but it is done for severe balance issues.

Personally I would like to keep my half functioning balance nerve.
Its been 17 months since CK and my balance problems continue to improve.
The odd mild dizzy spell when doing something physical.
Walking in the dark on uneven ground I need to do at a slower pace, but I can do it with reasonable confidence

Hopefully with time, things will improve.
They certainly have for me. I feel completely normal most of the time now.
Before treatment, I also felt like my intelligence had dropped by 20 points.

[teripo]

Thanks for the info but I didnt have treatment yet,I found out 6 mos ago I have the AN.I hope this is reversable after I get radiation.I took meds. last night that knocked me out!

[alabamajane]

Funny story,, I took my 6 yr old granddaughter to the movies yesterday and she LOVES to sit at the top, of course,, well, I could hardly get up the stairs for knocking into the side walls.. I am sure folks in there thought I had been drinking too at 11 AM.. it was kinda scary actually... I am only 8 weeks out from surgery, so this was one of my first excursions.... between that and the LOUD movie theater, my SSD, and the darkness and my "bad"eye drying out,, it was not the most pleasant movie experience I have had!!! On top of that ,, it was Alvin and the Chipmunks!!!
I bounce off door jams and trying to walk the dog after dark is almost impossible.. I am sure also that the neighbors are talking about me "drinking so early in the day"............... this is SOOOOO much fun isn't it??? but life is getting better,, or am I just adjusting to the "new" ME?

Karen,, I like the dr office telling you it was not the test but the tumor,, did you reply that the tumor had not caused these problems prior to their 'wonderful" test? I hate that test too,, ENG, I believe it is, but it definitely will make you sick for several hours ,, hope it is better by now... 

Off to get me a letter Tod,, may save me an unpleasant visit to the county jailhouse!!
Happy Holidays all,, Jane

[chloes mema]

Jane, no I didn't say that to the fellow that called me back since I got the feeling he had no clue & I didn't want to "kill the messenger"; however, I am making a list of things to talk to the doctor about at my next visit & that will be one of them. 

As far as getting better from the testing, I think it's settling down some but I feel like I'm always on a slight cheap drunk now.  Before I only had minor imbalance when up & moving around but now I have "waves" of "weird" feelings when I'm sitting down which I assume is vertigo.  Hopefully this too shall pass & as I've read in many posts this is the "new normal" for my life.

Also, a funny grandma story.  I told my 8 year old granddaughter that I could not hear or understand her with my left ear.  So miss smarty yells OK M E M A!!!!.  (had to have been there to get the full affect but she's so funny about my hearing loss)

Have a happy holidays!

Karen

[Crazycat]

     With a 5cm x 5cm compounded by hydrocephalus, my equilibrium problems got as bad as could be. I got so that I could barely walk, especially on uneven surfaces. When I was walking around my vision was convex (like a fish-eye lens) and my head felt like a helium balloon floating above and behind my body, attached by a long string.

     Working as a musician (how ironic!) I was gigging 4-5 nights a week at the time. This required driving long distances late at night. This was an amazing feat with my equilibrium as shot as it was. I was getting pulled over constantly for swerving. With bad double vision, driving was even more treacherous. I would sometimes become disoriented and get lost in the blinding headlights of oncoming vehicles. It was a terrifying experience. Luckily I was never cited for all the times I was stopped. I was staggering and stumbling around like a drunk—and I don't drink. The cops were primarily hunting for drunks.

     I began to feel like I was going to die. The malaise I was feeling gradually became the worst fatigue I'd ever had. I'd be falling asleep off and on throughout the day. I'd have to take pseudoephidrine every night in order to get out the door for work.

     Driving home from a gig one winter's night I nodded-off behind the wheel for the first time in my life. Even though I had felt it coming on just before getting off the highway and valiantly tried to fight it, it happened nonetheless. I realized how it happens: you don't even know it happened until you snap out of it; that is, if you're lucky enough to snap out of it, still being in one piece.
 
     I had just driven off the exit ramp and onto a secondary road with a double yellow line. Perhaps I had lulled myself into a false sense of security by relaxing, having got off the highway and being little more than a mile from home. I passed out as the road arced to the right and as I began gradually steering into it. I wasn't out for long, probably two or three seconds. When I came too I was on the opposite side of the road broadsiding a snow bank, piled against the guardrail. Because my left wheels had imbedded in the snow I couldn't recover by simply jerking the wheel to the right and shoot back over to the proper side of the road; I had to continue-on driving straight on the wrong side and gradually work my way out of the snow. This road being a major truck route to an industrial park and major UPS distribution facility as well as to the highway, it's a miracle I wasn't roadkill as no one happened to be coming the other way.

[schmidtkat]

Mindy,
Glad to read of your sense of humor with this. I too have numerous issues with balance/walk of the drunk. Here's one I try to avoid...when the Pastor asks us all to rise, then says let's bow our heads for a moment of silent prayer. While I am able to rise and bow my head for prayer, I'm concerned it may not always be silent. Tipping over and going thump in the pew may not be quietly accomplished. Guess I need to have a little more faith in the Lord to keep me vertical! For now I keep my eyes open, hold on to the pew in front of me and hope the Good Lord forgives me. I kind of feel like a kid again watching what all grown-ups are doing around me