No joking around. This past couple weeks has not been a really fun time. I have been so exhausted and sick. At first, I thought that I was coming down with the flu. I even missed a day of work. Today, I was so sick that moving my head made me nauseous. I headed out to do some treatment and surveillance at some of my hot spots, but quickly realized that I was not safe to be driving my truck. I returned to the office and did paperwork. I also began to do some serious reading on this drug and withdrawal.
One person's account:
"I stopped taking the drug for 4 days. For the first couple of days I seemed to feel fine...just very, very tired due to heavy dreams and the inability to sleep well at all. Once the 3rd and 4th day hit....it has been awful. I am moody, I feel light-headed, my head feels 'clogged', as though I have 'medicine head', I am very nausous and emotional. My heart feels like it is going to pound through my chest. I feel so, so icky."
"Day One and Two off medication: Brain zaps (you could swear you hear your eyeballs moving!),very dry mouth, a bit hyper (more talkative than usual), more sensitive to heatDays Three and Four: Brain zaps still there but not quite as intense,mild headache, face feeling flushed, sweating more than usual (during exercise),general flu like symptoms (muscle aches, sore throat)Days Five and Six: Still having brain zaps, mild headache, itchy, clogged head feeling, slight dizziness,just general yucky feeling."
"As far as the symptoms you are talking about, these are mine when experiencing the withdrawal:- sick stomach- dizzy/vertigo- can't concentrate or form clear thoughts- speech comes out wrong due to the lack of clear thoughts- hyper periods- heavy head- extremely emotional, go from sad to angry very fast with really no reasons- brain shocks, these are the worst along with being dizzy, its like an electric spark runs up my spine and bursts right at the top of my neck when it hits the brain- hearing things, can't really explain what I hear, almost like I can hear inside my head? Not voices, just noises, like hearing the blood go through the veins.- extremely tired"
"Within a couple of days of starting this, you begin to exhibit severe flulike symptoms - headache, diarrhea, nausea, vomiting, chills, dizziness and fatigue. There may be insomnia. Agitation, impaired concentration, vivid dreams, depersonalization, irritability and suicidal thoughts are sometimes occurring."
Let's read on:
Most common withdrawal symptoms: Yep. Got all of 'em.
Less common difficulties: Got all six of these too.
Parasthesia (skin crawling, burning or prickling)
Non-specific mental symptoms: I'll be darned. I have three of these as well.
Depersonalization - sense of unreality and loss of self
Okay. So I'm going through drug withdrawal. I had called the Cancer Center to express my concern about this drug, and was told "well, stop taking it for a week and see what happens." I was concerned about this advice. My sister has a drug manual for her nursing courses. I stopped by and read that dosages should not be 'increased, decreased, or discontinued' unless a doctor was monitoring the situation. I again called the Cancer Center to question the advice given in the previous call. I was told that the person would try to speak with a doctor and would call me back. If they did not get back to me on Friday, they would speak to me on Monday. No one called.
My questions now? Why in the hell would such a powerful drug be prescribed for chemo induced menopause and hot flashes? And why would the staff just blithely hand out advice like that over the phone without even bothering to familiarize themselves with the drug that they are offering advice about? Surely the staff realizes that they are dealing with some very potent drugs at a cancer center.
Okay. I admit it. I am really, really angry right this minute. And you know what else? I don't think that it's just the withdrawal making me that way.
PS: I'm as mad at myself as anybody else. NEVER take a drug until you've researched it. I just read a website set up for physicians offering advice to each other about how to handle withdrawal in their patients. One doctor commented "I feel as if I owe a personal apology to every patient I ever prescribed this to."