Hi, everyone:
It's been a little over 5 years since I received CK for my AN. Yet, I have had two extended bouts of vertigo and greatly increased disequilibrium (wonky head) in the past two months. It's been alarming that they occurred this far along after treatment, especially since I felt my balance had recovered around 90% since treatment prior to these episodes.
The first bout occurred after taking prescribed hydrocodone and flexeril for an acute leg injury, which had me bedridden for around ten days. I consulted with Dr. Chang, and he said it was probably the drugs and inactivity that caused the vertigo and imbalance issues (which lasted about a week, with the vertigo occurring on and off). After all, both drugs can cause dizziness, and neurological and brain disease are contraindications for taking them (the doctor prescribed them anyway, in spite of the fact that she knew I had two brain tumors). Anyway, my balance returned to baseline after about a week, I resumed my active lifestyle, and I thought I was done with vertigo.
But for the past 10 days, once again I've had pronounced disequilibrium and brief (lasting five to ten minutes), intermittent bouts of vertigo. Dr. Chang ordered an MRI, about a month ahead of my normally scheduled followup. To my relief, the results showed both of my tumors (AN and HN) are stable in size. When I asked Dr. Chang (through his assistant RN) what could be causing my current balance problems, he relayed that "your vestibular nerve will never be the same," meaning a damaged vestibular nerve has the potential to act up even years after treatment and without recurrence of tumor growth. This was a great relief to me (knowing the tumor hasn't grown), and I am entirely confident I can work my way back to very good balance.
So, what could have caused my most recent episodes of imbalance and vertigo? A few things come to mind. First of all, I have been working horribly long hours. I know from past experience that stress and lack of sleep and rest can easily cause balance issues with a damaged vestibular nerve; although I never had such pronounced symptoms from overwork in the past several years, I pushed it especially hard over the past two weeks. Second, my diet has changed a lot in the past two months. I usually eat large amounts of steamed, dark, leafy greens (collards, kale, chard) on an almost daily basis, along with baked salmon around three times a week, and I've long observed that doing so keeps my sense of balance in a very good state. But for the last couple months, my vegetable garden has been producing a bonanza of cucumbers, tomatoes and squash, so I've been eating those vegies instead of the dark leafy greens which had been a staple for the past several years since even before treatment. And I cut my salmon intake to only about once a week. On top of that, I went on a bit of a (sugar-free) dark chocolate binge for a few days leading up to the latest bout of disequilibrium and vertigo, and chocolate has high amounts of caffeine (a known trigger for imbalance in compromised individuals).
Sooooo... I'm going to take my own advice and 1. work less, 2. get more sleep, 3. exercise outdoors more, and 4. eat a diet rich in steamed, dark leafy greens and salmon. Additionally, Dr. Chang has ordered vestibular therapy, which I'll try for the first time (in the past, I've always felt that hiking was effective defacto vestibular therapy). Other factors that have kept my vestibular system in relatively good health in the past include good hydration, strict avoidance of refined sugar and moderation with eating oily foods such as peanut butter.
I hope relaying my experience helps all those who still struggle with imbalance issues. First and foremost, rest assured that these symptoms do not always (in fact, usually don't) indicate tumor regrowth, even when they occur over five years after radiation treatment.
Best wishes to all,
TW
