ANA Discussion Forum

General Category => AN Issues => Topic started by: chloes mema on May 23, 2012, 07:11:04 pm

Title: A tiny grumble
Post by: chloes mema on May 23, 2012, 07:11:04 pm
I'm very tired of feeling like I've had one too many drinks 24/7.
Especially since I can't drink anymore, it makes everything worse.   :'(

Karen  
Title: Re: A tiny grumble
Post by: LizAN on May 23, 2012, 09:48:59 pm
I'm very tired of feeling like I've had one too many drinks 24/7.
Especially since I can't drink anymore, it makes everything worse.   :'(

Karen

I know what you mean, Karen!  I have been trying to walk every day, getting in better shape for surgery this summer.  Today, I was doing that little side-step that drunk people do, and I was wondering who saw me do that.  My feet just don't seem to know quite where to go anymore!  I hope it gets better for both of us!
Title: Re: A tiny grumble
Post by: KBL on May 23, 2012, 10:04:27 pm
I'm quite certain I look like I'm a drunk when I'm out in our yard.  Sometimes I wonder if I would walk straight in our yard if I was drunk.  Lol.  Considering I don't drink, I guess I won't find out.
What I'm saying is I understand.

Karen L.
Title: Re: A tiny grumble
Post by: jaylogs on May 24, 2012, 03:24:24 am
Hang in there!! I know it bites having to feel always off balance, but eventually you'll look back and think to yourself, "Hey, when did I get better?" :)
Jay
Title: Re: A tiny grumble
Post by: MDemisay on May 24, 2012, 07:16:19 am
Karen,

Believe me, you will get used to it. Find your joy in other things like taking long walks or doing something that only you enjoy. It's a little much to get used to now. Go slowly with it, it may take some time to get used to.

See how you do with a cane for walking. I spent a time at the Kessler institute. They have a vestibular balance machine there it is useful for getting people to adapt. When dealing with vestibular issues, it is best to pay attention to your feet and your balance. We all could use a little more work on our core (the muscle group in our stomachs). I am working out to try and get into shape for my GK procedure next month.

 Try a cane for now, that helps in the short term and certainly will get you to stop feeling wobbly. For the longer term, you probably should do some stationary cycling to try to stabilize your core. The vestibular training probably you have to get a doctors order for so if you want or are concerned about it, you should probably go to your GP with your concern.

Check back with us often, to discuss your frustration, we HEAR you and are pulling for you. There is a lot of support here.

Mike
Title: Re: A tiny grumble
Post by: pjb on May 24, 2012, 07:33:58 am
I'm very tired of feeling like I've had one too many drinks 24/7.
Especially since I can't drink anymore, it makes everything worse.   :'(

Karen

I am one always trying to find the positive side of any situation how about this you are saving money with the expense of alcohol but yet still feeling like you had a few .... I have a sick sense of humor ...

Best Wishes,
Title: Re: A tiny grumble
Post by: lrobie on May 24, 2012, 10:27:27 am
Karen,

I can't recall if you had this symptom pre-CK or if it is something new.  As I've read here, there may be some swelling going on and pushing on your vestibular nerve.  Have you had vestibular therapy for it?  I'm not sure, but it may help.

Lisa
Title: Re: A tiny grumble
Post by: LizAN on May 24, 2012, 11:32:14 am
Karen,

I can't recall if you had this symptom pre-CK or if it is something new.  As I've read here, there may be some swelling going on and pushing on your vestibular nerve.  Have you had vestibular therapy for it?  I'm not sure, but it may help.

Lisa

Hmmm...if it started post-CK, maybe a round of steroids would help?
Title: Re: A tiny grumble
Post by: PaulW on May 24, 2012, 04:45:38 pm
Before Cyberknife, I was living in a cloud, and my energy levels were not the best...
A day after CK the cloud got thicker, and energy levels also dropped.
Its not like the fatigue stopped me from doing any big ticket items.
It was just easier to sit on the couch than it was to get up and do something.
Motivation at work was also a problem.
When I did get up and go for a walk I did feel better for it.
I found walking to be the best vestibular exercise for me.
While walking would make me tired straight afterwards, probably because of the amount of brain power required to keep me walking in a straight line. I would feel better the next day.
I also found Ginger Extract was good at reducing nausea and helped my ability to get up and get active.
Ginger extract has been proven to be a natural alternative to motion sickness medication, and when taken at the highest recommended dose it certainly helped me..
Don't expect anything instant from the Ginger, it was subtle, just take it, and at the end of the day review the day to see if you did more or not.
I certainly found my capacity to do stuff appeared to increase if I took the Ginger, and the cloud just thinned a little by the end of the day. 
The fatigue got better ever so slowly. It took about 5 months before I felt the same as pretreatment. At 18 months however the cloud vanished. Very happy to be living out of the clouds once again.

If your experience is anything like mine things will get much better, but the first 5-6 months in particular energy levels were not the best.



Title: Re: A tiny grumble
Post by: chloes mema on May 25, 2012, 09:36:12 am
I'm very tired of feeling like I've had one too many drinks 24/7.
Especially since I can't drink anymore, it makes everything worse.   :'(

Karen

I am one always trying to find the positive side of any situation how about this you are saving money with the expense of alcohol but yet still feeling like you had a few .... I have a sick sense of humor ...

Best Wishes,
I love it!!!  Yes, that had occurred to me since there's still 8 bottles of wine out of 9 sitting in the pantry.  I do miss my wine but you're so right, I get the feeling without the cost or the calories!  A positive way of approaching it.

Yes, I had these feelings prior to CK but I don't remember me paying so much attention to them before.  I guess I'm just more "tuned" in now after having read what might / can happen after CK.  I do notice that when I'm doing something (exercising, cleaning etc) that I'm totally concentrating on the issues are very minimal.  I have been doing yoga again which is helping. 

Karen  
Title: Re: A tiny grumble
Post by: MDemisay on May 25, 2012, 02:56:02 pm
Bravo for yoga and what about prayer and meditation?

Try saying (as Dr.Wayne Dyer recommends) I am healed!Make that your mantra! I do this every day, it works! Do the deep breathing exercises too.
 After a while you get an inner feeling of peace!

Mike
Title: Re: A tiny grumble
Post by: millie on May 26, 2012, 04:48:12 pm
Hi folks-
The little high one gets after two glasses of wine is exactly how it feels.I never imagined  I would not want to have that feeling, but how times change. Sometimes I feel so angry. even though we try to be positive. Thanks for verbalizing my frustration.  I am watching and waiting having been diagnosed in February with a 1.2 cm and my next MRI is late August.  I wonder if any therapy helps relieve the symptoms; I can tolerate the hearing loss but the dizzy feeling and the high feeling are really really annoying.  I tell people now my left ear doesn't work and to please speak more loudly but I feel like an old coot.  (At 65 I am starting to accept I am leaving middle age. Major denial here.)
 Still learning a lot by reading this site; trying to get back on track/relearn what I lost  due to my husband's sudden heart surgery which made me grateful for blessings but now am slipping. I do walk in a straight line, and only occasionally feel like I might tip to one side, but I have been gardening, etc. etc. with no mishaps.  I think it may be all in my head.  (!)  No pun intended. I seem to drive just fine (I drive for us both now ) and I wonder if it is safe. (The doctor never mentioned driving; one said sure you can drive.) I do really concentrate more when I drive and am more careful; the last months I am definitely more symptomatic.

Thanks for being there.
Thanks for the sharing.
Mil
Title: Re: A tiny grumble
Post by: chloes mema on May 27, 2012, 12:10:15 pm
On a lighter note, I told my neighbor if you see me staggering down the drive way to the mail box it's not because I've been drinking.  She replied, if you see me staggering down the drive way towards the mail box it is because I've been drinking!   ;D

Karen  
Title: Re: A tiny grumble
Post by: New girl on May 27, 2012, 04:19:45 pm
LOL  ;D
Title: Re: A tiny grumble
Post by: james e on May 29, 2012, 11:41:14 am
I am 2 years post-op and still wonky. Everyone just has different outcomes. I wish my balance was better, but it is not going to get any better. It is the worst part of my surgery, by far.

Hoping yours gets better,
James
Title: Re: A tiny grumble
Post by: arizonajack on June 08, 2012, 09:11:42 am
I'm recently diagnosed and on watch and wait.

I'm having the same balance issues that you are all describing.

I'll be sitting for a VNG next Tuesday.

http://www.stopdizziness.com/services_vng.asp

Not sure it will tell me anything I don't already know. Anybody else have one?

I found a set of exercises online.

http://www.nyogmd.com/wp-content/uploads/VestibularExercise.pdf

Anybody have any success with stuff like that?
Title: Re: A tiny grumble
Post by: Kathleen_Mc on August 07, 2012, 09:50:38 pm
Over 20 years later and I still am dizzy everyday and walk like a drunk on a "good" day, on a "bad day" I have even been so bad I actually fell off my kitchen chair (from sitting on it)! Just go with the flow! and too bad if people think you're drunk!  ::)
Kathleen
Title: Re: A tiny grumble
Post by: LizAN on August 09, 2012, 04:38:43 pm

I found a set of exercises online.

http://www.nyogmd.com/wp-content/uploads/VestibularExercise.pdf

Anybody have any success with stuff like that?

Those exercises are similar to the ones House Clinic gave me.  I'm still working on them.

Liz
Title: Re: A tiny grumble
Post by: MDemisay on August 10, 2012, 12:56:15 pm
Thank you LizAN!

I hope everything is working well for you. I will try these.


Mike
Title: Re: A tiny grumble
Post by: chloes mema on August 15, 2012, 09:02:42 am
Quick up date since I've not been on this forum in a long time.

I've been working with a personal trainer who has each session given me balance exercises along with my weight training exercises and they seem to be helping.  I still have dizziness / balance issues but I do think the balance issues have improved since I've been working with Colleen.

I still walk like a drunk sometimes but at least I haven't fallen over.  Still bang into the door jams at home if I'm not paying attention but that's all a part of life now.

Stay positive!  
Title: Re: A tiny grumble
Post by: MDemisay on August 15, 2012, 10:37:17 am
Karen,

for the record I bang into door jambs as well and I stub my toes as well. I applaud your efforts with a therapist specifically trained in balance, good job!

 I walk with a cane, but who's complaining polite people open doors for me! I used to mind but , now it's kind of nice! I always am thankful. We have to be, after all when I was younger I used to always open doors for gentlemen and ladies, I still do! I am also thankful for those moments when I can catch up with you.

Mike
Title: Re: A tiny grumble
Post by: arizonajack on August 17, 2012, 12:14:44 pm
I recently came across the term "vestibular rehabilitation therapy."

There are numerous resources.

Start here:

https://www.duckduckgo.com/?q=vestibular+rehab&t=i
Title: Re: A tiny grumble
Post by: PhilippinaJane on September 05, 2012, 01:52:03 pm
Even after my GK the balance was not like the way it use to be. I did find working out helped a lot . If you go to the gym use the machine with cable weights and lift what you can with one leg up. Make sure to switch up the leg.
Jane :)
Title: Re: A tiny grumble
Post by: str8testshot on September 05, 2012, 07:47:57 pm
I had nearly continuous vertigo for months, even in my dreams, yuck!  then I had the magicians at house make it disapear. day2 vertigo gone, the wobbles are easy for me I just keep moving, eat well and monitor my sleep! 2 months post op barely a wobble unless I'm tired  or have too many drinks.  If I feel like I need to rest and ignore it , I start to wobble. miss a meal or eat junk for a day, wobble.  lay around for a couple days, wobble. smell red wine, wobble. walk in the dark, run into stuff.  I put on a  ;D and keep moving. as for driving I started back at 5 weeks post op when I felt like I could turn my head and not wobble  :) or get confused and I planned my routes away from traffic and worked my way up from an 80 year old driving style to a 50 year old driving style and will stick with that just in case ;) 
Title: Re: A tiny grumble
Post by: Sam Rush on September 06, 2012, 10:35:17 am
I am 8 yrs post op and still very wonky. I hate it when I am walking on the trail and strangers ask me if I'm alright!!!
Title: Re: A tiny grumble
Post by: chloes mema on September 17, 2012, 08:46:30 am
Thanks all for suggestions, comments, and testimonials.  It's good to know I'm not alone.

To add to the mix, I now have a 3 month old puppy but I think when I have to concentrate on something other than myself things are better. 

Karen
Title: Re: A tiny grumble
Post by: MDemisay on September 17, 2012, 10:32:39 am
Karen,


Cleaning up after a puppy will distract you alright and give you plenty of puppy love as well! Excellent idea!!

I highly recommend some pet therapy we have used it here at the facility for 20 years! It encourages socialization skills and lowers the heart rate in children and adults. In the elderly, particularly homebound adults it has been known to extend their lives.


Mike
Title: Re: A tiny grumble
Post by: chloes mema on September 19, 2012, 03:09:48 pm
Mike

At this point in time, a week and two days into owning this little guy, I'm not so sure I want to extend my life.   ;D  What a handfull this 8 pound puppy has turned out to be but you're right pets are a wonderful thing to have, so much love.

Karen
Title: Re: A tiny grumble
Post by: MDemisay on September 20, 2012, 10:44:48 am
Karen,

I am jealous! So much unconditional love you will get from a puppy. My dog is 10 years old now, but still acts like a puppy! I have trained her and she is very smart and will do tricks for biscuits!

 I got it as a companion dog for my wife initially but it became a companion dog for my other pomeranian who passed away in March of 2011. Before I new of my growing AN.....Sometimes God gives us just what we can handle.....I was so upset at finally having to put her to sleep, she lived a good long time 14 years. In fact, we got her for Christmas when my daughter was 6. We registered her with the AKC, her name was La Belle GiGi.

May your dog multiply the love you give it many fold, you deserve it.

Mike
Title: Re: A tiny grumble
Post by: chloes mema on October 09, 2012, 01:14:13 pm
Mike

Thanks for the positive posts.

I know what you mean about loosing a dog after 14 years, we lost our Rhodesian Ridgeback when she was 14 1/2 years old which is very old for a dog that size.

I don't know if there's any correlation but since we've gotten the puppy when I've gone to a doctor's office & had my blood pressure taken it's been very low; 97/56 & 112/65.  At both offices they asked me if I felt OK; I said yes must be the puppy.

He's growing & getting better behaved every day.

Karen