Author Topic: Getting dizzy again??  (Read 8026 times)

jwporter

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Getting dizzy again??
« on: April 06, 2012, 01:40:32 pm »
Hey everyone. I'm 4 month's post-op. It's been a crazy few months. We just had  our first baby (a son!). He's been loving to keep us up at night (the little whipper snapper : ) ) which seems to have aggravated my usual headaches to get a little worse. Also, I'm starting to experience dizziness again when I walk or move my head fast, which I haven't experienced since my Vestibular rehabilitation. Has anyone ever experienced a relapse of dizziness/balance issues? Do I need to do the exercises again?

sunfish

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Re: Getting dizzy again??
« Reply #1 on: April 06, 2012, 02:02:10 pm »
Unfortunately, in my case, my poor balance/equilibrium/wonky head comes and goes.  My issues gradually built up for nine months or so post-CK, and then gradually subsided.  But since that time, I'll suddenly have a week where I'm significantly worse.  Which is disheartening, because every time I think I've got this thing behind me, I backslide a bit.

For example, this week has been great as far as decreased vestibular symptoms.  I wish every week could be as good as this one.  But I hate to get too optimistic.  So it's a process, and it sounds like you're still early on.  Take care, and let us know how it goes!
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

spgreenfield

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Re: Getting dizzy again??
« Reply #2 on: April 06, 2012, 02:14:39 pm »
JW - I had to read your post twice to make sure I didn't write it!  Or at least the first statement!  I'm about 4 months out too....and this week was HORRIBLE for me!  Normally I had to do extreme movement to feel "wonky" at all - and this week - even turning my head, looking down at the keyboard (like now) - walking - you name it - I'm totally dizzy!  I'm wondering, I'm in South Dakota and we've just had a HUGE burst of temperatures making things bloom - especially the trees - so I started taking my Zyrtec - although I am sorry to report it doesn't seem to have helped much....I'm going to try and add some benedryl to it and see if that helps.  I used to get that "spacey" feeling with allergies in the past, and now I think it's amplified with the vestibular stuff as well.  Either that, or I have lots of fluid in my head - which the antihistamines will definitely help!

Wish I could get some Nasonex and see if that might help a bit too....have you tried taking an allergy pill yet?

Pam
Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

CHD63

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Re: Getting dizzy again??
« Reply #3 on: April 06, 2012, 02:34:22 pm »
The "wonkyheadedness" really does seem to come and go for many of us for a lengthy period of time.  I find that fatigue, increased salt and/or caffeine consumption almost always triggers more disorientation feelings.  (I have an unusual situation of NO vestibular function on either side so I will always fight the disequilibrium feelings.)

I no longer do my vestibular rehab exercises on a regular basis, but it certainly cannot hurt to revisit them if one is having additional or renewed balance problems.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

jwporter

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Re: Getting dizzy again??
« Reply #4 on: April 06, 2012, 10:37:53 pm »
SP - You know, you might be right. My allergies have been acting up and I'm wondering now if that has something to do with it. My mom has inner ear issues and she gets dizzy as well during the spring and fall.

spgreenfield

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Re: Getting dizzy again??
« Reply #5 on: April 07, 2012, 07:58:30 am »
Combing our ALREADY dizzy state WITH allergy dizzy or foggy or whatever you want to call it...makes for no fun!  :(

Pam
Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

foodsmarts

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Re: Getting dizzy again??
« Reply #6 on: April 07, 2012, 06:19:32 pm »
My husband noticed that I complain about dizziness when we have high pressure weather here in S. California.
I'm going to keep track of weather and the symptoms for a while to see if there's a correlation. I'm over
three years past my CK and have accepted that I will be wonky/mildly dizzy forever (same as I was before treatment)..sometimes just a little
and sometimes, like today, very bad.
5.4mm X 3.2mm X 3.88 mm at diagnosis 8/28/08; 1.1 cm X .5 cm 6/16/09; CK Stanford Drs. Chang and Soltys 8/19/09

Kathleen_Mc

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Re: Getting dizzy again??
« Reply #7 on: April 08, 2012, 05:00:47 am »
If I stop and think about it I feel the dizziness everyday, but it doesn't cause a probelm.
When I am sick, and in particular if I am congested, I find it sometimes to be as bad as when I first had surgery. Also I find being too tired or stressed will make it worse.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Chances3

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Re: Getting dizzy again??
« Reply #8 on: April 11, 2012, 11:01:03 am »
Hi JW,

All the replies you received are dead on.  I think this time of year can be challenging with all the allergies.  Considering you are only 4 months post op, I would say you're still a baby in recovery.  Don't be discouraged there are set backs, it just happens.  There could be a number of reasons for it, environment, food, stress, lack of sleep and just plain old healing.  Doing vestibular exercises wouldn't hurt.  If I was a betting man, I would say the sleep disruption and the stress of the baby had some impact. Hang in there you will feel better again, and congrats on the baby.  Remember children are a blessing and we love them unconditionally - until they get their car license !! 
« Last Edit: April 11, 2012, 11:07:30 am by Chances3 »

stoneaxe

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Re: Getting dizzy again??
« Reply #9 on: June 20, 2012, 09:40:03 am »
I'm 3 years out from surgery. My balance is still slightly off, nothing that anyone else can notice usually, mostly feeling a little wonky. The major balance problems I had in the past have been eliminated with exercise.  My therapy is getting out on the water on a standup paddleboard. There's no question that when i don't get out enough that my balance deteriorates. All it takes though is one good session challenging myself and I feel good again.

I've been very busy the last few weeks so I didn't get any time on my board. Late last week i was feeling off balance a lot. On Saturday I was in a race in Boston harbor in tough conditions. The 1st lap I fell 4 times, the last lap not at all. it can be that quick a reset. I went surfing yesterday afternoon/evening. My balance was so good that I didn't fall at all for the 1st hour despite catching a lot of waves and surfing hard. I'm going for a paddle tonight with my daughter and grandaughter (2 year old). my granddaughter will be on my board with me. We'll only get wet because we want to..... ;D. Frequent exercise that challenges your balance can work wonders. Find something that you can enjoy doing and do it often.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

spgreenfield

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Re: Getting dizzy again??
« Reply #10 on: June 20, 2012, 10:20:14 am »
"Find something that you can enjoy doing and do it often."  Wonderful!  I've noticed lately that my balance used to be horrible if I crawled on the floor....lately it's been much better - now that I'm actually DOING it with small home projects!  Here in South Dakota it's a little tough to go surfing, but I bet I could find other things to do.  Thinking about Tai Chi....might help....

Pam
Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

stoneaxe

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Re: Getting dizzy again??
« Reply #11 on: June 21, 2012, 11:11:20 am »
Hi Pam,

Standup is being done everywhere these days. In fact, the biggest growth in the sport is happening on inland waterways. Surfing is a big part of the coastal boom but flatwater recreational and racing is getting even bigger. I googled "standup paddleboarding in South Dakota" and one of the results was this in Sioux Falls:
 http://sdcka.blogspot.com/2012/05/saturday-paddling-fair.html
The event has already happened but I'm sure these folks could point you in the right direction to someone in your area.

Best of luck in finding something that helps.
Bob
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org