Wonky head first time

[Tisha]

Well, I just have had/still haveing my first experience with "wonky head" this morning, 8 months after CK.  I had imbalance prior to that, and it has almost gone completely in the last 8 months.  Now, all of a sudden out of the blue, I start getting dizzy, really dizzy, have to hold on to furnture to sit down.  Then when I focus, the "wonky" stuff I've been reading about started.  Things going up and down, up and down...not spinning. 

How long does this last during an episode and can anything make it worse?  Alcohol, or caffeine?  I know that issues can creep up after about this time frame.  My AN is a bit larger according to my MRI at 6 months, and I have noticed my hearing is off a bit.  I figured it's the tumor swelling bothering all my nerves.  This wonky head is the pits.

Tisha

[davjack]

I haven't had treatment yet, but I find that caffeine makes it worse and I read that somewhere too. Alcohol...well yeah. That makes you wonky when you don't have a lump in your head. Now that I come to think of it...we're all frightened by our wonky heads and I know people who wonk their heads out on purpose, lol! Me included at one time. I'm a good girl now. Only one glass of wine and that's if I'm not working the next day.
DJ

[foodsmarts]

I had CK mid-August. I've had a wonky head for 9 months or so and the CK didn't change it or the imbalance. In fact, every morning I wake up feeling like I have a hangover (what I remember of them). Because it's always there, I've gotten used to it and don't suffer much except when I think about it, sort of like the tinnitus.
I'm convinced that we can used to almost anything - we are extremely adaptable creatures. The wonkiness has decreased my creativity - ideas are harder to come by, I think because the brain is busy dealing with the wonkies and the imbalance. Fatigue is another result.

For me, alcohol makes me feel better in that it seems to mask the wonkies or else it numbs my wonkie receiving centers. Maybe this has something to do with my Irish genes:). The attraction of the "wee drop", as my grandmother used to call a slug of Irish whiskey, is powerful therefore I limit my consumption to one glass of wine a day and work on other coping strategies. Caffeine doesn't seem to affect me at all.

Has anyone suggested you try a couple ibuprofen to reduce the swelling? Works for me sometimes.

Good luck and I hope the wonkies will pass for you.

Helen



 

[Dog Lover]

I haven't had treatment yet, but I find that caffeine makes it worse and I read that somewhere too. Alcohol...well yeah. That makes you wonky when you don't have a lump in your head. Now that I come to think of it...we're all frightened by our wonky heads and I know people who wonk their heads out on purpose, lol!

OMG that is funny. I haven't had wonky head for a long time now, and the only time I notice that I'm a bit "off" is when I'm extremely tired or if my sinuses are acting up. Even then, it's not wonky anymore, thank God. and having caffine HELPS me feel better. But....I also TOTALLY agree with the drinking part...I'll have one drink occasionally, but I"m kind of scared to have anymore. I don't EVER want to have anything close to wonkiness again!! It sucks!

cathy

[Anomar11]

Hi Tisha,

I had a bad round of vertigo at 4 months out, then another at 7 months, but less intense.  Since then I've had wonky head to a certain degree.  I define this as a off balance, swimming head, but not spinning like vertigo.  I have some days worse than others, but have adjusted to a great degree.  I find walking helps alot.  I have been prone to motion sickness all my life, and have found that a small amt. of alcohol helps, over a certain amt. it has the opposite effect.  I also find this to be true for wonky head, or maybe it just doesn't bother me as much?  It obviously effects the vestibular nerve if one has too much to drink so I wonder if there's something to a little bit.  Caffeine doesn't effect it one way or the other, but does crank up the tinnitus.  Hope you're feeling better.  I took decadron first time and low dose valium the second time.  I keep low dose valium on hand just in case, because it can come out of no where.   Take care.

Mona