Pat's Place: Dealing With Vertigo And Other Treatment Side Effects

After my initial multiple myeloma diagnosis in April 2007, I was immediately rushed to a radiation oncologist for treatment. My myeloma had done a real number on my bones. I had lesions in my legs, hips, and ribs, but the worst, most dangerous lesions were in and around my vertebrae.
Extensive radiation helped shrink the lesions. A corticosteroid, dexamethasone, helped with pain and inflammation. However, the combination left me feeling sick and dizzy—a classic case of vertigo.
You don't hear multiple myeloma and vertigo mentioned together often, but I have spoken with a number of other myeloma patients who experienced symptoms similar to mine.
I visited the Mayo Clinic's patient website while researching my column. The site defined vertigo this way:
“Vertigo — the false sense of motion or spinning — is a common type of dizziness. Sitting up or moving around may make it worse. Sometimes vertigo is severe enough to cause nausea and vomiting.”
Lightheadedness, loss of balance, and a feeling of faintness are also mentioned as other kinds of dizziness.
An entire page was dedicated to listing and describing common causes of dizziness. No less than nineteen causes were listed there—most totally unrelated to what I had experienced. I kept reading. There it was, buried about two thirds of the way down: medications.
For some unknown reason, the combination of my radiation and daily dexamethasone and possibly my nerve compression and newly emerging neuropathy caused me to experience a month of extreme vertigo.
I couldn't read. I couldn't watch TV. I was too dizzy to walk, yet sitting or lying down was just as bad. I would get up, lie down, sit, lie down, then get up again—endlessly.
I could barely eat or sleep. Anti-nausea medications didn't help. Neither did stopping my radiation treatments on the weekends. Only a week to ten days after the last of my treatments did I start to feel normal again.
It didn't help that I lost almost twenty pounds—or one eighth my body weight—in three weeks.
In retrospect, I should have asked my radiation oncologist to allow me to stop taking dexamethasone. Maybe that would have helped.
I'm sharing my past miseries with you for a reason: Don't blindly accept uncomfortable side affects without explanation! Just because you have cancer, doesn't mean you need to be uncomfortable.
When I mentioned my discomfort and symptoms to my nurses, they shrugged their shoulders with no explanation. “You shouldn't be feeling sick,” they said. “Some of our patients feel a bit fatigued toward the end of their visits.” However, most of them probably weren't taking dexamethasone each and every day, either!
Since I hadn't seen a multiple myeloma specialist yet, I should have pressed on and asked my radiation oncologist about my symptoms—and my internist or anyone else who would listen. But I was sick. I had just been diagnosed with cancer. The bottom line: I didn't know any better!
I chose to “suck it up” and live with it. Don't make the same mistake! If your meds are making you sick, ask to have them reviewed. Suggest changing doses or frequency. Check to see if another drug can be substituted. Get a second opinion if you must.
Maybe the side effects can’t be completely avoided. Vertigo, neuropathy, and other serious side effects can't always be prevented. But their effects can often be mitigated or improved.
Feeling sick and having cancer isn't any fun. Don't allow the experience to be worse than it has to be.
Feel good and keep smiling! Pat
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Pat:
Thanks for another great column! Yesterday during my weekly Velcade chemo infusion session there were two fairly new patients at the leading edge of their treatment. They were talking about onset dizziness and I, not having experienced the side effect of vertigo, had nothing concrete or helpful to contribute to the conversation. Now I do. One of the gentlemen is a friend from church and I've sent the column link on to him. Thank you for your help!
Sean M.
I was surprised and interested to hear someone speak of dizziness when it has caused me so much grief to the point that I was sent to a neuroligist to find the trouble. I got up in the middle of the night to go the bathroom and not realizing I was still dizzy from getting up crashed into my computer desk and broke my hip. That led to hip surgery and a stint in the hospital where I pick up everything because of my immune system being down. So the dizziness and shingles have caused me the biggest problems thus far(along with a lot of lesser ones).It is good to hear others thoughts and concerns about MM since I have no one I can find here to talk to. I'll keep on pluging along with you. Keep up the good work. Marg
I hope you are doing better, Margaret! I have a friend who's vertigo is so bad she has trouble perfoming daily chores. She has had it for years... No improvement or hope for improvement, since docs can't identify cause. Good luck- Pat
I use to fly left seat on a plane we affectionally called Fat Albert a 737-400 series.I was also an excellent freestyle skater untill September 13 2001. I blacked out while skating.Since then my world has not stopped whirrilling around me everyday.
Does anything help? How long has this been going on? Pat
I am early stage MM, and have the same dizziness, it first happened one day when I got up, had to lie back down, repeated this for 6 hours, I still have it when washing hair in the shower I get dizzy, and other activities similiar, I am on NO medication or had any treatment yet.
I have had the tingling in arms and fingers, for several months, occasionally.
Interesting, Paula. Maybe like peripheral neuropathy, these vertigo-type symptoms get started by myeloma and then are aggravated by various therapies. Glad yours seems to be under control...
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