Author Topic: What makes your balance worse? Better?  (Read 12298 times)

sunfish

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What makes your balance worse? Better?
« on: August 17, 2010, 12:07:32 pm »
What makes your balance/vertigo/disequilibrium/unsteadiness worse?  Are there certain foods, activities, etc. that make these symptoms worse for you?

What makes your symptoms improve or get better?

I've been struggling with this stuff on and off for over 6 months, both pre- and post-treatment.  I'm figuring I may be stuck with this for awhile, so why not ask the "experts" (my fellow strugglers) for advice.

I just called my neurosurgeon's patient coordinator (maybe not-so-patient coordinator  :)) and advised them of my dizziness/balance issues.  Of course, doctor's out of town, she'll call nurse practitioner, maybe get back with me tomorrow . . .

If I wait for them for help, I could be waiting a long time.  That's why I went ahead and got myself referred to vestibular disorders clinic by my most excellent primary care doc.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

iluuvpups

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Re: What makes your balance worse? Better?
« Reply #1 on: August 17, 2010, 12:15:23 pm »
While my balance is generally pretty good, there are two things that make it worse.  1) When I close both eyes.  2) When I'm tired, like after exercising.  I get wobbly.
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

leapyrtwins

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Re: What makes your balance worse? Better?
« Reply #2 on: August 17, 2010, 01:10:57 pm »
My balance is about 98% good. 

But being over-tired makes my balance worse.

Also walking long distances or walking in the dark make it worse.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

nanramone

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Re: What makes your balance worse? Better?
« Reply #3 on: August 17, 2010, 09:31:05 pm »
Vestibular therapy has been helpful - my balance is improving. Two months ago, I fell when trying to walk a straight line...today, for the first time, I jogged (slowly) one mile on a treadmill and hardly had to grab the hand rails for support! I do think the therapeutic exercises have a lot to do with my becoming more stable.

I did feel dizzy after jogging; however, I think in time this will improve, because I used to feel dizzy a lot while doing nothing at all!



Lizard

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Re: What makes your balance worse? Better?
« Reply #4 on: August 18, 2010, 10:46:00 am »
I have to agree with the previous comments, when I'm tired I find my balance is worse as well as when I try to walk in the dark.  That's the worst.[..somedays are just generally better than others and even my personal trainer says the same thing for any people.
The key is to challenge yourself and make your nerves work...anyway that has helped with me.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Syl

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Re: What makes your balance worse? Better?
« Reply #5 on: August 18, 2010, 10:54:58 pm »
Sunfish:

Shortly after my surgery, I went to vestibular therapy. That helped alot.
I haven't noticed any change in my balance because of any food I eat.
When I'm tired, I walk like a drunk.
Time has certainly improved my balance.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

leapyrtwins

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Re: What makes your balance worse? Better?
« Reply #6 on: August 18, 2010, 11:06:57 pm »
Totally forgot until I read Nan's post that walking/running on a treadmill makes my balance worse.

I'm perfectly fine walking/running on a track or in an open area, but for some reason I can't do that on a treadmill.

Not sure why that is; but I find it weird.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

nanramone

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Re: What makes your balance worse? Better?
« Reply #7 on: August 19, 2010, 02:25:59 am »
Jan - I'm just guessing, but for me, it seems that the treadmill is problematic because it forces me to walk and jog in a straight line, rather than weave. I am trying to relearn to ambulate with my legs closer together, as suggested by the therapist. I have probably been walking the way I do for sometime, (legs apart, somewhat flat footed stomping) while my brain learned (incorrectly) to compensate for the damage caused by the AN nerve involvement. I wasn't even aware of all of this until I went to therapy - but I stand with my legs wide apart in order not to lose my balance, which also throws my back out of alignment and screws up my posture. This commonly happens to people who are older to me. I am attempting to correct these problems.

Anyway, as I said, I can't weave all over the place while on the treadmill, and this oddly results in a bit of dizziness as my little brain is overworked trying to relearn the correct way to walk or jog. This is the best I can do to explain this, as I understand it. I had noticed for the past couple years that my footprints in snow were weaving about quite a bit - now I understand why!

sunfish

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Re: What makes your balance worse? Better?
« Reply #8 on: August 19, 2010, 07:01:54 am »
Nancy, I went jogging on the beach last night, and I tried your suggestion of turning my head from side-to-side and up-down every now and then while jogging.  I think this is a real challenge.  Weirdly enough, towards the end of my jog, I started to feel more stable.  I actually felt almost normal last night and this morning.  But I seem to have the most troubles at work.  I think part of the problem is anxiety over having some sort of embarrassing balance-related incident at work, and the more I worry about it, the more overly aware of my issues I become.  I'm a psychologist actively working with inmates at a medium security prison, and my job doesn't allow for much in the way of weakness of any sort.  Also, I spend too much time at computer.  Will try to get up every half hour or so and move around.  I've made progress this week, because I'm learning that I worry more than I need to about my performance - my imbalance isn't very obvious at all to those around me.  So I've "pushed through" lots of times when I would previously have gone home and gone to bed.

Thank you all for your suggestions, they're helpful.  You are all truly the only people in the world who understand what this feels like, and I don't know how I could manage without your support!
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

opp2

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Re: What makes your balance worse? Better?
« Reply #9 on: August 20, 2010, 07:10:57 pm »
Totally forgot until I read Nan's post that walking/running on a treadmill makes my balance worse.

I'm perfectly fine walking/running on a track or in an open area, but for some reason I can't do that on a treadmill.

Not sure why that is; but I find it weird.

Jan

Could it be the big boat phenomenon? You and the treadmill are moving, the room is not. Like when you're on a ferry or cruise ship and you look out the window. One of you is moving and one is not. Makes me sick actually. The boat thing, not the treadmill. But that's my take on it.

Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

leapyrtwins

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Re: What makes your balance worse? Better?
« Reply #10 on: August 20, 2010, 11:06:58 pm »
Could possibly be the big boat phenomenon, but I'm not sure.

About two weeks ago, I was actually on a ferry in Seattle - with another member of this forum - and I didn't have any issues or sickness. 

While I like the theory, I'm not sure it's applicable in my case.

If I don't get big boat phenomenon on a big boat, would I still get in on the threadmill?


Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

kenneth_k

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Re: What makes your balance worse? Better?
« Reply #11 on: August 24, 2010, 11:55:38 am »
I can relate to all that's been said.
Furthermore, footwear can make my balance issues worse. I find it a lot easier walking straight in combat boots than sandals. Rugged terrain makes me tired pretty fast.
Still, things could be a lot worse ;)

Best regards, Kenneth

Stephanie

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Re: What makes your balance worse? Better?
« Reply #12 on: August 27, 2010, 04:06:58 pm »
I too have more problems when I am tired. I have to say though, I cannot recommend the vestibular therapy enough. I have an awesome therapist who has helped tremendously. I would say 50% the exercises she has me doing are with my eyes closed and my arms crossed over my chest, that way I cannot rely on my eyes or arms for balance. They make me dizzy as can be at first but it is not long before I can master them. I am glad that you were able to get referred to a vestibular center, I think you will be happy with the results.
AN 3 cm left side (1.7 cm @ diagnosis 5 mo. prior - MRI didn't show all)  Surgical removal 7/12/10, CSF leak - surgical repair 7/26/10

leapyrtwins

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Re: What makes your balance worse? Better?
« Reply #13 on: August 27, 2010, 09:17:37 pm »
I never went to a PT post op, just did vestibular exercises my neurotologist gave me.

They helped tremendously.

If you'd like a copy of them, sunfish, (or anyone else) I have them in a word document.  If you PM me your email address, I'd be happy to share them.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tumbleweed

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Re: What makes your balance worse? Better?
« Reply #14 on: August 27, 2010, 09:31:23 pm »
These things make my balance worse:

1. Not getting enough sleep
2. Stress and overwork
3. Not drinking enough fluids (getting dehydrated)
4. Not walking outside for a couple days or more (i.e., not exercising my vestibular system)
5. Eating very salty or very fatty foods in excess (e.g., roasted/salted cashews, peanut butter)
6. Eating refined (cane) sugar
7. Constipation

These things make my balance better:

1. Eating salmon
2. Eating steamed, dark leafy greens
3. Walking, hiking, backpacking -- especially over uneven ground or off-trail
4. Sleeping til I naturally wake up (I try not to use an alarm clock, but let myself sleep until my body has gotten enough rest, if possible)
5. Staying regular (easy to do on a healthy, balanced diet of unprocessed foods)

Best wishes,
TW


L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08