Wonkey head question

[dominic12345]

It's been a couple of months since I've had any fatigue and I'm able to run every day.  I'm still experiencing the "wonkey head" every day.   I've had 2 days in last 60 days where I felt completely healed with no wonkey head feelings.  It really reminded me of just how much I have gone through over the last year. I realized that I'm still only 70 % of how I felt before treatment.

This has to be the cruelest experience I've ever had.... 2 days of feeling great, no vertigo, no dizziness, all positive feelings...thinking I was totally back to normal and then back to 24 hours a day of wonkey head.

Any comments are greatly appreciated.

[Patti]

I read about "wonky head" a lot.  Can you describe it for me? I'm glad some days are good for you! Sorry about the others.  Patti

[CHD63]

Hi Patti .....

The term "wonky" originated on this forum many years ago.  It rather accurately describes that disoriented, not knowing up from down, kind of feeling many of us have ..... which is completely different from true vertigo, where the room spins.  Hope that helps.

Clarice

[PaulW]

I got the wonky head prior to Cyberknife.
It got pretty wonky straight after CK but came it and went, I remember at 5 months I had my first day of feeling normal again. I had another big change at 13 months where after a week of wonkiness things really started to get back to normal.. The second year was far easier than the first for me and I really got back to doing everything by the end of the second year.
Radiation really is a bit of a journey and it takes 2 years.
I am at 5 1/2 years now, I pretty much do anything. Climb ladders, snow skiing, canoeing.
I don't think about my AN much any more.

[Patti]

That is so encouraging!!!!!!!!!!