Watch this! Is this what you're wonkihead feels like?

[lrobie]

I found a website today that sort of explains the feeling that my head goes through daily.  I have been thinking that my vestibular-ocular reflex is off still.  I am very curious if this is what others are feeling and what they refer to as wonkihead.  After watching all three video clips, I do not have this nearly as bad as what is demonstrated.  However, I would say that I would have a lessor version of clip three.  Please take a look and let me know what you think.

http://www.gentamicin.com/symptoms/bouncing-vision

Thanks,

Lisa

[KBL]

  Wow, I'm the third one.  I showed it to my husband so he could see what I'm talking about.  Interesting to watch.  Yes, that helps descibe wonkiness.
Karen

[Twindy]

Thanks for the link--nice to show to others so they can understand.  I had a much lesser version of #3 for three days in aug. 

[It is what it is]

Thanks for posting this Lisa.  You have shared some really helpful things.  . I had my first day of feeling normal yesterday.  I realize that may come and go but what a wonderful day!  How are you?

Karen

[lrobie]

I'm feeling okay.  I'm still waiting for a day to feel normal.  I'm beginning to wonder if I'm overdoing my vestibular exercises.  Most evenings, my head feels like it weighs a ton.  Maybe it's because I'm moving my head too much for the gaze stabilization exercises.  Anyhow, I showed these videos to my husband and son last night and they were very surprised.  My husband said he didn't know if he could live having that feeling all time.  Maybe he'll understand why I don't like going for joy rides anymore.

Not that I want others to feel this way, but I'm glad to know that I'm not alone.

Lisa

[It is what it is]

I was also pushing my exercises hard but then had an issue with retinal tears in my eye and after surgery to repair them last week, I was restricted in my activity level for 6 weeks.  So, I stopped the exercises and yesterday and so far today, I actually feel (for the most part) normal for the first time.  I don't know if that is a coincidence or if it is related to doing nothing for several days?  I'm ecstatic whatever the reason.  I will hope you experience this feeling soon as well. 

With caring,

Karen

[susierg]

I too am still having wonky head on a daily basis.  I went this week for my 4 month post op MRI.  I talked to my ENT about my balance problems.  My MRI showed that my tumor is completely gone (Yay), but that my cochlea was inflamed.  He thinks that might have something to do with my balance issues.  He put me on a steroid dose pack and it has helped a little, but my wonky head is still so bad that I am still unable to work a full day.  I do my vestibular exercises daily, sometimes 2 -3 time a day.  My husband asked him if I could be overdoing it.  His reply was you cannot do the exercises too much.  He still says to be patient and let the brain learn to adjust.  Well my brain must have rode the short bus, cause its just not getting it.  LOL  It just gets so frustrating!  I've even taken up yoga and had my "energy healed" twice.  Really weird experience, but at this point I'm up for trying anything if there is a remote chance it will help.

[Kathleen_Mc]

 For me this sensation has deminished a great deal over the years, it gets bad when I am sick, especially if it involves a sinus issue. I do hope it deminishes over time for everyone!
Kathleen

[lrobie]

I actually found out that we have a Certified Vestibular Therapist in my town.  I'm scheduled to meet with her next Tuesday.  Her write up states that she specializes many disorders, but I was happy to see one of them being Acoustic Neuroma.  She has a Doctor of Physical Therapy degree.  She worked at Inova Fairfax Hospital in Falls Church, VA.  It states that she is an active member of the Vestibular Disorders Association (VEDA).  I'm hoping she has a miracle cure.    I'll keep you posted and let you know if I learn anything more.

Lisa

P.S.  I don't get my post-op MRI until the one year mark.  I hope there isn't something else going on in there.

[millie]

Lisa-What a gift, to have a vestibular therapist right there!  I hope you have good results and will be looking for your posts.
I myself don't know if when I use the word wonky, I am describing the out of head, slightly off balance, about twenty/ten extra pounds (the spirit) are sitting on my left head or a combination of these three.  It is annoying and life changing.  On a bright note, my surgeon's N.P. said yesterday on the phone that the feeling I describe should diminish over time.  Also, I never fall when I walk, just veer a little so I try to focus on something in the distance and head straight for it.  They told meto do that in the hospital when I was first out of surgery and it seems to help.
Have a good Thanksgiving...Mil

[robertb]

Thanks for the video link. I showed it to my wife so she could get an idea of what I experience. I am on the 'watch and wait' path but have had terrible dizziness which led to intense pressure cooker head about to explode (how can one describe the feeling?). I have been going through a Chemical Labrinthectomy treatment (Gentamicin injections into inner ear). As a result of the treatment, I experience this 'wonkihead' to the degree that you all seem to be describing. Thank goodness it is only mild but very disconcerting.  (pressure cooker feeling is gone but still dizzy 24/7 which wears me out.  robertb

[mikechinnock]

Nice link. I experience version 3 when I walk, or am tired and just stand 'Still'.

[Big Steve]

I experienced that depicted in the first two videos the first day or two after surgery.  My heart goes out to anyone experiencing that for more than a few days.

I'm 6 weeks post translab and have maybe 1/10 magnitude of that depicted in the third video, and it seems to be gradually getting better.  So, I guess I have a bit of oscillopsia.  Seems to be better when I jog than when a walk, better walking than driving.  Always way better than 4 weeks ago (i.e., 2 weeks after surgery).  I hope to ski some easy groomers in a couple weeks.  That's sure to be interesting! 

[Palace]

BS:   

I just have the issue if the lights are out, then so am I.  In the darkness, I can't stand up straight or regulate balance very well at all.

Rolling colored vision was my problem of many before being properly diagnosed.

I don't have the time this morning to break-this-down, so here is something interesting to read on the related topic.  You might even want to help/contribute there.

I'm late for a business meeting so, in short---I hope this gives someone help or insight.  (pardon the pun) 

Many of us went a very long time (too long) before the proper diagnosis, me being one of them.

__________________________________________________________________________________________________________

Wavy lines in vision and eyeball twitching feeling: 

Google "wavy lines" for full-page info. on this.

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Guest 6 years ago
my son is 28 in good health and normal blood pressure. once or so a week he has a twitching feeling in his left eyeball also at this time he sees in the cornor of that eye wavy squiggly lines in his vision.
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See these topics also:
wavy lines on side view cutting off the vision Wavy or deformed lines or objects after Retinal detachment surgery distorted vision in left eye, and seeing silvery streaks

Guest 6 years ago
It's stress. He needs to see a psychologist.
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jen377 6 years ago
it sounds to me like a migraine headache. i have them and i see lines and other vision problems. mine are usually caused by stress. he should see a doctor to make sure it's not something more serious.
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philip_lamb 6 years ago
Wavy lines or distortion in vision can be the precursors to a retina detachment. If he is also experiencing flashes or floaters in his vision, or if he experiences a cloud over his vision, seek medical attention IMMEDIATELY.
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air1989 5 years ago
ive, had flashes in my eye's its scary because when it happens to me i think that iam dead or sumthing but ive had it for a while but i think its stress!!
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Guest 4 years ago
I see the wavy lines too. I've always seen them. Especially when I look at a very blue sky. It seems like something supernatural. They are not so much wavy lines as they are a constantly collapsing honeycomb shape. Kinda like being under water and seeing the light refracting through tiny waves. I'm amazed that I found someone else that has this.
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getfunky79 4 years ago
hey ppl,

I would like to suggest about this things such like floaters or wavy lines u see in your vision field. I see them too they come and go and especially I see them when I try to notice them . They can be related to some medication. If youre under stress/anxiety /depression its easy to encounter these strange things.

Iwas very afraid because of them before and I thought that im starting to see hallucinations but I checked with my doctor about them and he told me they can be affect from my anxiety/depression or side effects from the meds.

I hope my suggestion can be helpful and a peace of mind for all of u, because really sometimes u think ure going deep down the road to craziness..

But I wish u all the Best health possible through your life and God Bless you!!

N.B If you are under stress or pressure try and drink ginkyo herbal tea before bedtime. It really helps for a good night rest and for your anxiety maybe...

Best regards

Gil from Malta
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ksf 4 years ago
Do an internet search on occular (eye) migraines. The info there might help you...it did me.
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Guest 4 years ago
Guest wrote:

    I see the wavy lines too. I've always seen them. Especially when I look at a very blue sky. It seems like something supernatural. They are not so much wavy lines as they are a constantly collapsing honeycomb shape. Kinda like being under water and seeing the light refracting through tiny waves. I'm amazed that I found someone else that has this.



Finally! I've done all sorts of Google searches to find someone else who has this exact same issue. Blue skies and white walls are where I see it the most, especially if I close one eye.

Anyway, thanks for letting me know I'm not the only one
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Guest 4 years ago
Yup, I see the "underwater" effect when looking at the sky as well. So does my sister. I think it's more common than we think it is. I would like to find out exactly what this is caused by though.
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Guest 3 years ago
I have these, went to see an eye specialist and she said it is because my eyes are very sensitive but not at all an issue. She said people with blue eyes...like me get it more. what colour are other peoples eyes, would be interesting if this is true. Rolling Eyes
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Guest 3 years ago
How about going to see an Optometrist? In diagnosis, there is nothing worse than going to the internet. This is why people dedicate their lives to a special field(s). I think that all the years of schooling and working in the field says something. Internet diagnosing is all hearsay and, "in my own experience." advice. I just don't understand why people turn to the web, see something and then freak out cuz they think they have something wrong with them when it could be actually nothing. Go see someone who actually knows what they are doing and talking about. Either that or take your eyes out with a spoon one by one and see if the wavy lines go away. If the lines go away when taking your left eye out, then bingo! There is your problem. Same thing applies if you take out your right eye. If the wavy lines stay with both eyes taken out, then I suggest you replace your eyes under warranty. Rolling Eyes
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Guest 3 years ago
i have also always seen these things. it seems like any large solid color, enough to mess with your depth perception, really helps to see them. for me they always seem to be black and white at the same time. if that makes sense. or black leaving white trails or vice versa. i haven't noticed any honeycomb effect, and it doesn't look like water to me, but that might just be a matter of opinion. i have noticed, if you really concentrate on one spot in your vision where a squiggle just was (it can be difficult not to just focus on whatever is in front of you) the squiggle will come back. i mean it will go and loop along the exact same path leaving the same trail. unendingly as far as i can tell. all of them...

my best guess is maybe there are blood vessels just barely being seen or an effect of the blood vessels being picked up by the eyesight. it could be only a few blood cells at a time and we are seeing "shadow" of them.

either that or its The Force! yeah! mytocloriwhatsits!

microscopic eyeball zambonis? that one makes me happy. that is now my reality.
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Guest 3 years ago
i notice no one seems to have picked up on the fact that the post states this guys eye ball twitches. Forget migraine and such this could be superior oblique myokymia. It is a very rare and difficult neurological problem that often Neurologists don't even pick up - most have only read about it and never actually seen it. I have this and it can become so bad you can't even walk in a straight line as your vision becomes distorted and eventually you get double vision. It's not life threatening or anything but damn it's frustrating and sick making. I suggest you get checked out for this by someone who knows about it but sadly if they don't see it when it's actually happening they probably wont be able to diagnose you with it. It can go into remission for quite long periods of time but for me my remissions seem to be shorter and the flare ups getting longer. Anti seizure drugs and surgery seem to help some people if you get bad enough to warrant such drastic steps.
It might be that you just feel your eye twitching but if it is actually your eyeball moving then this is serious. Usually its the eye lid not the eyeball - not to worry but if the eye ball itself is moving then you need to investigate because if it is not superior oblique myokymia then its' something very nasty that needs urgent attention! I urge to to look further into this if the eyeball is actually moving/twitching please!
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crestheaven 3 years ago
I see the squiggles too. Am having them now and have noticed them when I am stressed, looking at computer screen too much, or when my blood sugar is low. So happy to hear others have them too. Thank God for google. I visited the opthomologist last week, and thankfully my eyes are healthy. Started to think "brain tumor" which is just my anxiety kicking in. However, if I/you ever see flashes, or double these need immediate attention. An eye twitch and be nerves also.
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[It is what it is]

After reading the last posting, I'd like to add my hope that those with eye issues go to an ophthalmologist.  I had floaters and flashes and was immediately referred to a retinal specialist who found I was having vitreous detachment that was also causing tears in my retina.  I need surgery immediately to prevent full retinal detachment.  This happened in both eyes this year along with the AN surgery.  I don't think they are related.  One eye was before surgery and the other eye happened after surgery.