Clear description of "WONKY HEAD" please...

[4cm in Pacific Northwest]

Background
The Environmental Statistics around me….

Barometric Pressure in Portland Oregon
Low to high at a steady increase
Sunday Sept 6    8am   29.87
Monday Sept 7   8am   30.121

Yesterday
In the morning I felt fine and had lots of energy and focus.  Yesterday before lunch I started to get “wonky head” (well what I think is “wonky head”)   ….by 7 pm evening I was very uncoordinated and finding it just sooh hard to focus.  As I attempted to put things away, items on shelves etc… I kept knocking things over. I looked back over some of my writing, I did during the day, and all I could say was “whoa”  . There before me was evidence I was having a difficult time focusing in thought and formulating my ideas.  My writing, from yesterday, reminded me of the some of the work I would get from ADHD students -submitted across my desk from past teaching years. After deciding to delete and edit a ton of stuff-I just packed the lap-top up and went to bed earlier than planned… My hope to wake up with more clarity and better coordination...

I had bizarre dreams (nightmares) all night – fright and flight type stuff having me wake feeling stressed rather than rested in the morning. (Brain pressure related?)

I know I have read many a thread on “barometric pressure” related to “ wonky head” … as some of us describe ourselves with “barometer head”.

In truth I still do not understand it and it REALLY scares me when this happens. I am more focused this morning but I woke up with the AN “tuma” side (there is now NO tumor there) feeling so much more full and my hyperacusis was ten fold. I do not (thank goodness) get head aches with this wonky head (and my heart goes out to those who do). Once I am up and have my coffee (a natural diuretic) the fullness subsides. It is even better after I exercise my work out. Sometimes it disappears with the work out. Is circulation relieving the pressure of the Dura fluid? Is it actually Dura fluid that is the issue? I just do not understand it.

I had these symptoms before the AN surgery but it made total sense then as with an XXL tumor as there was so much excess pressure in the head with the brain stem and cerebellum being pushed over. With the tumor gone- you “would think”  that this would be behind me.

Can you folks please describe for me “WONKY HEAD”?

…What the symptoms for you are, when you get it, the duration of it, and what you think is the cause.

I guess if I could understand what it is more (as I did once I studied “acoustic neuroma”) it would not freak-me-out so much.

If I go into a doctor and say “well I get wonky head periodically" he and I will NOT be speaking the same language (although all of you patients MAY know exactly what I mean by “wonky head”) … I need some more understanding of it and better words to articulate with so MAYBE I can get some medical assistance with it (or just simply learn to live with it!  ) Other than the once-every-3+ months Botox in my hypertonic synkenisis facial muscles …and of course my daily coffee (max 12 oz)   I am NOT on any drugs or medications… so it is not that I am on any loopy side effecting meds…

Help?

Daisy Head Mazy (DHM)

[Cheryl R]

DHM, I wish I had answers for you!           I do fairly well being inside at home.     Being elsewhere is when can have varying degrees of feeling off.        Walking outside or in big stores or malls.           It is hard to describe how the head feels.      Not dizzy but just a funny feel.      My walking can be looking not too  bad but I have the wonky head.      It can really look off but the head isn't acting up.     I have no idea why.                Hills and inclines are hard and more wonky then.      Stepping up a curb frequently does.          It is torture in winter to be by a curb with a bit of ice in front of it so would make a long step and that is for sure a wonky time.         So my way of feeling is different than your situitation.           I have more off balance times if haven't made myself be walking  even if it is weird feeling.                              My over all thought process has changed some since the last surgery.      I do ok with my usual routine housework but making my self do big organizing projects is harder now.          Getting ready for the Chicago trip was harder than would have been in the past.          We aren't away for long now so was big deal to get it all taken care of.              The thinking of how to describe certain ways, things or how it feel is harder.                   This also is different than your issues and I know mine is more from the surgery on both sides.              I hope there can be an answer to fix yours but do not know if the pressure changes are fixable.   
My sister told me yesterday of a guy from their church who had a virus hit his hearing on one side.     He is now SSD and been thru all the tests.       He has the hyperacussis on the other side now.      She said he is getting an implant and I assume a BAHA as she knew it wasn't a CI.            I will see if can keep tab on how he is doing with the hyperacussis.     
      It is very hard when have the unusual problems after surgery and hope for relief for you!                     Cheryl R

[leapyrtwins]

The best description I've ever seen on the Forum described wonky head as being similar to a bobble-head doll.

I can't recall who came up with this description, but I thought it was the most apt description I've ever read.

Jan

[cindyj]

Yes, Jan, I agree, the bobble-head description is one I've always thought was pretty accurate.  For me, it's like being on a boat that's just sitting idle in a lake.  That slow swaying feeling, yet we're on solid ground.  Mine is more constant, not episodic.  Some days, some activities (such as tennis) certainly make it worse, but it's nearly always there. 

I started vestib therapy a couple of weeks ago to try to get rid of this wonky thing, but don't know that I'll be disciplined enough to keep up with the exercises that one is supposed to do to help out...will let you all know 

Cindy

[ppearl214]

oh, my dazy hazy mazy!     

Captn Deb officially coined the term "wonky head" here on the forums long ago... and at the time, it was described as a combination of the dizziness/vertigo with head disconnect feel (much like when you take cold meds). I have my docs recognizing the term now for when I get my wonky head. Used it this past Friday at a dr appt (with the bloke in tow) and he even noted to the dr how, for me, it enhances in darkness.

hope that helps.
xoxoxo
Pearly Whites

[Lilan]

4cm, hope you can get this figured out. Maybe see your internist or an allergist?

To me "allergy head" is the closest non-tumor-thing to feel like "wonky head." It's that feeling of your head being stuffed and your mind drifty and not in sync with your body.

I wound up not having any specific allergies, but I do have "non-allergic rhinitis," which means allergy-like sinus symptoms relating to *barometric pressure changes* as well as irritants like very strong scents and dust. Nasacort helps a lot.

I just mention that since you are suspect of the barometric pressure changes -- it can have a very real connection with head symptoms!

If you have any kind of even minor fluid buildup you feel is happening, do you sleep with your head somewhat elevated? I know I wake up feeling worse if I've gone too "flat" overnight! (Again, sinus-related, not surgery-related or whatnot.)

[reg]

i too have the constant feeling of fullness, tightness, disorientation and balance issues associated with or from (wonky-headness the vestibular excercises seem to help subtlely, but you have to be persistant with them i like you dont have the headaches either (thank god) as far as the weather is concerned my situation seems to get worse or act up when it gets colder keep on plugging away and it will get better reg

[tenai98]

For me wonky head is like having one to many to drink....without the alcohol affect on the brain....Thinking is clear, but head just feels out of sorts....and at times I get this tightness like my head is in a vice....Like Cheryl R I"m okay in my home, but when outside, or at the mall, my head feels like its in a cloud....or that state where you are of being in that state of  waking up but yet still asleep....that spaced out feeling....Never did recreational drugs because of that in between state of mind...didnt like it....
I walk a somewhat straight line when i am fully concentrating on my balance and walking...but if Im talking and not paying attention to my walk, I stagger....And the looks I get...I just laugh it off...knowing they know not..
JO

[leapyrtwins]

At one point Capt Deb posted a very accurate graphic of a smiley face that was basically a wonky head.  I can't seem to find the thread, but if someone can it's a great illustration of what wonky head feels like.

Captain, are you out there??

Jan

[ppearl214]

At one point Capt Deb posted a very accurate graphic of a smiley face that was basically a wonky head.  I can't seem to find the thread, but if someone can it's a great illustration of what wonky head feels like.

Captain, are you out there??

Jan

when I'm good, I'm really good... .here's the thread....

http://anausa.org/forum/index.php?topic=6112.0

and here's the image....



phyl

[leapyrtwins]

Thanks, Phyl.

I just LOVE this image    I searched everywhere for it yesterday and couldn't find it - glad you did.

[yardtick]

I love that little guy.  Him and I are best friends.  I know at some point through out my day he appears and keeps me company.  It is kind of nice because I am never alone 
Another thing, I'm a cheap date, no booze required

Anne Marie

[madison]

hello. the first time i got "wonky" head i was so afraid i was going to pass out right there on the floor in target! after awhile though i learned that i'm not going to pass out and that i just have to get through it. it's still a scary thing though every time i have it. and yes, it's very hard to describe to someone. i feel it mostly in humidity and recently i was in the mall and walked past the fountain in the food court and "whoa!" i'm glad to read that you mentioned barometric pressure because i made up that theory for myself and was even trying to track it on the weather channel. glad to see it may have some validity.
well, good luck with your explanation-hope some of us helped.

[Laurief]

Hello all,

I'm a real newbie here and I appreciate all of you articulating "wonky head." I've been trying to figure out how to explain that same feeling and couldn't put it into words.

Large open buildings, like warehouse-type stores, seem to make me feel the most 'cloudy' and uncoordinated. From your posts it seems that I can expect more of the same after removal of the AN.

Laurie

[Cheryl R]

Laurie,      You will have some balance issues after surgery and the wonky head feeling most likelywill be around for a while but in time for most people will improve.             The brain compensates in time for most people and there may be some balance issues under certain conditions.             After surgery make sure to keep walking once you feel able to after a few days and some do do some balance exercises.          I have had more than one surgery due to NF2 but know after my first surgery years ago that I got to where had few balance iissues.           It does vary how the AN surgery and long term post op affects people.           Having the vestibular nerve completely severed does help.                               I was never dizzy after the first surgery and never had the weird head feel till walked outside and then discovered it.       I just kept at it and also had it in malls and large bright lit stores.   
Even now keep walking so the brain is compensating ahead of time and should help.                   Good luck with your surgery.
                                                   Cheryl R