ANA Discussion Forum
General Category => Inquiries => Topic started by: Nancy Drew on November 05, 2008, 05:44:27 pm
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I have heard so many people say they have something called WONKY HEAD. What is this exactly? ??? As a "newbie postie" I am curious.
Thanks,
Nancy
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Wonky head is something you would know if you ever have it. You're not dizzy but a funny feel to the head when the balance is off and you are out walking. Might even be a bit of a different feel to each person. Mine is/was worse when outside or in a mall. I still get it at times but isn't as bad as has been in the past.
Cheryl R
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Do radiation people get WONKY HEAD? Since I am a "newbie postie" I am "on watch" for stuff right now, and I guess I should chill out and take it day by day. Still, I'm interested in learning more about this topic. Nancy
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I could be wrong, but I don't think wonky head is exclusive to us surgery patients.
Nor is it exclusive to radiation patients.
I think it's more of an AN/balance thing that doesn't really have anything to do with treatment option.
Jan
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Yes, I have had a few too many. Not so nice. What happens if you are drunk and have wonky head at the same time? Probably not a pretty sight!
Nancy ::)
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Nancy~
I would think that if you are drunk, you probably wouldn't care about being wonky headed, but I agree: Probably NOT a pretty sight!! ::)
K
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CHEERS ;D ;D ;D
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Having one too many is a good analogy for wonky head. I didn't have it for long, but to me it felt like things were out of proportion, and were distorted - sort of like if you photographed your life in snapshots about a second apart, and then put it together, instead of it rolling smoothly like a film. The odd sensation of that happening sort of throws your balance off kilter. So for me it was a vision/balance issue, not exclusively balance.
Tammy
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Wonky head.........I finally see why I was an easy drunk, I was half way there already.
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Perfect descriptions of wonky head! ;D Having a drink or two when you're feeling wonky headed might land you on the floor. Cheryl's description is exactly what I feel and under the same circumstances. It does get better!
Wendy
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Hi,
I am queen of wonky head ;D. I have had it since pre-CK. It was the main reason I got more interested in pursuing other hearing issues. For me it is always there but varies in degree of imbalance, dizziness. I have the visual problems that often accompany it. If I am in a car, for instance, the things I look at appear to move MORE than they would. If we go over a bump in the road, it amplifies the bump and I cannot focus. Cars passing seem to visually look like a swoosh instead of normally configured cars. I do believe it is worse since radiosurgery, HOWEVER, I am only 5 months post-CK AND I had all my zappings in one day, instead of fractionating them. Long story about why I decided to do that. I do feel it was more of a jolt so probably can't be compared to normal CK.
I may have a procedure where and injection(s) of this antibiotic that is toxic to the balance organs. This causes no signals to be sent to the balance nerve, anymore. Then the brain can adjust to a set point and stop reading those signals allowing adaptation to the new scenerio.
Take care fellow wonky-heads, I feel your dizziness!
Mary ;D
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Funny.. not so funny story...before i knew i ha an AN..i thought i was getting ear infections well during an episode of ear infection i drank 3 glasses of wine at a local restraunt/tavern..
i went to get up from my chair & literally fell down ...hard...my bf had to help me off the floor becouse i could not regain my balance..it was off for days i had to call into work becouse i really could not stand up.SCAREY.
I decided that i would not have any more cocktails during an episode.
Now after surgery i have couple & i think i walk straighter after acouple of "teas"
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Hi Nancy,
Wonky Head, as you probably have gathered by now, is when your balance system is just enough out of whack to make things unsteady, but possibly not so out of whack that you actually feel "dizzy". There is a great explanation of how our balance system works and this is a wonderful article to read. I don't know if you read it or not. I think this should be handed out to everyone with an AN! It explains a lot.
http://www.hearinglosshelp.com/articles/balancesystem.htm
Sue in Vancouver USA
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I definitely had the Wonky head thing going on right after I had the baby. That's the biggest reason I finally went to the dr. I could no longer deny that there was something BAD wrong. :P You should have seen me trying to ride my horse. It was so bad that I had HER walking like a drunk. LOL It's much better now, even though other symptoms are worse. I wonder if that is good or bad...
Vonda
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I am wondering about the vision issues. I have always had good eye sight......20/20. I think since radiation my eyesight has changed. I feel like I need to get glasses. My annual eye exam is coming up soon. But, do any of you think radiation can affect eye sight in general? If so, will it pass? ??? I am quite disturbed because I have always thought, "Well, I might not be able to hear, but at least my vision is good!!!".
Nancy
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Hi,
I will hear more about it on the 18th. I hope to give you all a good update then. It is called gentomycin. It is used for Mennieres (sp?). I know there are different dosages. I just want to make sure it doesn't cause louder tinnitus, it bothers me enough already. I have a very discordant avante garde concerto in my head. ;D
Take care,
Mary 8)
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Tammy, this is what I'm still experiencing. I'm curious to hear how long this lastest for you, or is this something we just learn to live with. My vision on my good side has become distorted since surgery. My neuro said my good side shouldn't be doing this and advised me to see my optho if it doesn't resolve itself. I'm going to give it eight weeks or so before I make an appt.
Great discription of "Wonky Head" by the way. I'm writing it down to share with others. Short and to the point.
Cheri
Cheri,
The Wonky Head lasted about 2 months, I'd say, but the intensity of the disorientation was decreasing during that time. It's not like one day I had it and the next I didn't. I still have it upon (rare) occasion, usually at night or if I turn suddenly. I had poor vision in both eyes following surgery. My AN side eye had no tears, so was always either blurry because it was dry or blurry because I'd just doused it with eye drops again. My non AN side eye had poor vision for maybe 3 or 4 weeks after surgery - I don't know why, and neither did the opthamologist. Hope your symptoms subside soon. On the bright side, my eye now had proper tears again, and my vision is fine. It's just such a S-L-O-W process!
Tam
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i've never heard of wonky head in re: to off balance but thought it was interesting at the baltimore support group last month a patient said he felt as though he's walking on a moving bus. Now that i can relate to!
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Having one too many is a good analogy for wonky head. I didn't have it for long, but to me it felt like things were out of proportion, and were distorted - sort of like if you photographed your life in snapshots about a second apart, and then put it together, instead of it rolling smoothly like a film. The odd sensation of that happening sort of throws your balance off kilter. So for me it was a vision/balance issue, not exclusively balance.
Tammy
This is exactly the way mine is. My surgeon described it as a problem with the coordination between between the eyes and remaining balance nerve.
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Is "Wonky Head" a real medical term? I've been doing medical transcription for over 40 years and have never run across it. I do think Phyl coined the phrase originally and it stuck because it fits so well. Maybe next time I get a dictation from a neuro doc about disorientation, etc., I'll change it from "the patient felt disoriented" to "the patient felt wonky headed" - LOL!!!
Sheryl
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Sheryl,
Capt. Deb said this phrase was actually coined by her and her late cousin . She seemed quite sure he would get a kick out of it sticking and all of us using it. If you really used wonky head in a report, I can only imagine the doc's face if he saw that :D (the doc's fact == :o)
Still laughing,
Wendy
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Hey Wendy - thanks for setting this "wonky head" straight and thanks to Capt. Deb for the initiation.
Happy, Healthy New Year,
Sheryl