Ok, please describe wonky head.. i think i have it!

[crystallady]

I have had mild strange sensations in my head since march.  I had brain surgery to remove a meningioma and the radation for that AN in May.  Now, all of a sudden these sensations are worse.  So, please explain what wonky head it for everyone and what do you do with it? fix it?

Cindy

[susier]

Hi Cindy,
  For me, wonky head is a feeling kinda like I'm drunk, or have a really big hangover.  Lack of concentration.....foggy headed....just an overall "funky" feeling.  I've never been able to explain it, especially to my docs.  My first consult with the team of neurosurgeons at MD Anderson just stared at me when I tried to explain it to them.  I guess its probably not quite the same for everyone, but that is as close as i can get to mine.

[mema]

Hi Cindy,                                                                                                                                                                                 


Can you describe the feelings you get.  I know for myself after radiation I got all kinds of feelings in my head that made the doctors look at me puzzling.  A feeling of a worm inching through my head.  A feeling of a wave, or a fishbowl being carried.  Pins and needles.  A feeling of a weight in my head (there is none).                                                                                                                             



                                                                            mema

[Sue]

Cindy,

So, what this must be - Wonky-Head - is our balance nerve, is probably ever so slightly irritated (gee I can't imagine why  ),  just enough to mess us up, but not enough to be a full-blown vertigo attack (and Thank God for that, I guess) ...and so I, often times feel slightly out of whack - out of focus - like somebody should fine tune the TV, if anyone remembers when we had to do that!  It's like being slightly out of sync with the world...a little bit drunk, tipsy, over-medicated a tad, functional but not quite....Sometimes it seems like my head feel and sound like it's being slightly "squished".  It's all very subtle and difficult to explain. To be honest, I didn't have this before my GK treatment.  So, I am visualizing my AN's death throes and this is what happens when it's dying.  Of course, I don't have a clue why this is happening to us, other than the obvious reasons that the nerves are stressed, damaged, irritated, healing...whatever is going on at the cellular level has an effect on us and we all have learned the hard way how important those nerves are to us. When they are not happy, then we are not happy. It affects how we perceive our world.  And for many of us, we are just a little bit "trippy". Groovey dude!  It's the 60's all over again.    (oh, just kidding....)

Sue in Vancouver

[crystallady]

Well, I do feel off balance, but i have alot of presure in my head.  Its like the presure from a bad sinus infection all over my head.  I run into things, lose my balance and someone said like a  hangover.  It was very mild until the beginning of this month and its gotten worse.  One day i was in someones office and i could complete a thought or a sentence.  I had to leave.  They put me on steriods and it took the edge off but barely.  I can barely work and feel like my whole brain is moving around in my head. Its very uncomfortable and the doctors dont know what to make of it.  I dont want to stay on the steriods much longer but I cant function at all right now without them.  Trying desperately to understand what this is and whats causing it. I would love any insite or help please.

Cindy

[yardtick]

Okay, I can relate to all of the post here that describes "wonky head".  Doctors can be so clueless at times.  I had a  customer, a beautiful young chiropractor explain to me why I had a "wonky head."  She told me more than an ENT and neurosurgeon put together.  Sometimes I wish I was hung over so at least I would have had a great time the night before. 
Thank goodness for this forum.  It's hard enough at times to cope with AN and to me this forum has been a life line.  I can't wait to get on line and see how everyone is, "wonky head" or not we are all in this together. 

Anne Marie

PS  We An'ers should coin "wonky head" like Paris coined "that's hot". 

[Raven]

Well, I definetly know what you guys are talking about.............when I lost my hearing in my left ear back in July and found out I had a AN (well, two of them) I had no feeling of "wonky head", balance issues, nothing. Then after a few weeks, it started slowly and got progressively worse. At first it felt like having a few beers on an empty stomach and I could deal with that. But now it feels like I"ve had a few other things as well and it is like this all day long, everyday and I hate it, I just want to get back to normal.

Question..... will I ever get back to normal ?

And.........is the one on the left side (surgery in 2 weeks) causing this or the one on the right side...........Hmmmmmmm?

John
 

[Clifton]

i can relate to most of you.

the few weeks before i had surgery, working was almost unbearable.
i sell cars at a pretty busy dealership. part of the job (many of you might hate us), requires standing outside for hours at a time looking for customers. in the business we call it "pounding the lot". but leading up to my operation, i had no desire to stand outside or talk to anyone...in the car business THAT IS SUICIDE! haha thats how we make our money.

the lord blessed me with alot of opportunities that i didn't have to work very hard for luckily and i finished off work before my leave pretty strong.


I felt like i was never really "completely there".

Like i had a couple of drinks and was "buzzed".

I am 2 weeks post op now and i really haven't been having this feeling too much. more or less dizzy than anything and even that has calmed down considerably. i believe once my facial nerve returns i will be pretty much back to where i was before i knew i had anything wrong with me. well...aside from being deaf from one side now.

[mema]

Sue,                                                                                                                                                                                             



I think you explained it perfectly.  The feelings we all get in our heads are from numerous reasons like irritation, healing, fullness, damage etc.     When my doctors put me on mobic for another ailment, my head feelings went away.  My neuro told me that kind of explains some of the spasms I have in my head., because .  Mobic works on inflamation and nerve damage.  And yes even though we look fine, no one knows or understands  how these  effects us, other then all our AN family.




                                                                             mema








 

[satman]

Time will heal,vestibular therapy helped me.
it was explained to me as such.
I have ssd on the left , so the brain is taking everything in the right ear ,which it has to be trained to do so.
I had to deal with that for about 6 months and all of a sudden it was gone.Yet,I had a lot of therapy and it really does work.
hang in there .

[mema]

Satman,                                                                                                                                                                                   


What exactly is vestibular therapy?  Does it cost much?  Who gets you into it?                                                                                 



                                                                                       mema

[Captain Deb]

Vestibular therapy is balance retraining and works like this--they do all kinds of things that make the wonkyhead WORSE, which forces the residual visual and musclo-skeletal systems to compesate for the loss of the inner ear balance system.  Make sense? What we have here folks is a broken gyroscope. My neurologist got me into my program and my insurance paid for 35 sessions and it really helped. Not so much the sessions but the stuff they taught me to do at home and while I was out walking.  I had alot of intereference from chronic headaches which set me back.

My wonkyhead manifests itself with the following symptoms:

1. Head feels like it's not attatched to body and feels swollen
2. Neck stiffness
3. Ache behind eye sockets
4. Trouble focusing eyes
5. Trouble concentrating


It's very different from true vertigo, which I had post-op and the horizon felt moving and slanted.

Welcome to Wonkyhead-world!

Capt Deb

[mema]

Thanks Captain Deb,                                                                                                                                                                 


I guess I don't have wonky head.  I do have vertigo.  Although I'm off balance at times, my vertigo is more of a problem with me.  Wonder if vestibular  therapy works for vertigo.  My doc's don't ever act like anything can help my vertigo.  The medicines they put me on knocks me out.  So now that I'm retired and don't have to  be at work I can just stay in bed till my vertigo passes, and don't take the meds that knock me out.                                                                                                                                                           

                                                                                    mema

[crystallady]

Mema, i have been searching for a place for vestibular rehab and it definitely can help with vertigo.  please investigate for yourself.

[mema]

Crystallady,                                                                                                                                                                               



Thanks for the info.  I will do that.                                                                                                                                               


                                              mema