Hello and happy turkey day to those of you just south of the 49th parallel.
In drugs, drugs, drugs part 1, I wrote about my frustrations with trying to devise an effective treatment plan. In the land of chronic pain, we have to hunt for puzzle pieces without being allowed to look at the picture on the box. With radically different advice from radically different kinds of health care providers, I’ve been left feeling mighty confused more than once. But while naturopaths, osteopaths, massage therapists, chiropractors, and acupuncturists have not always been helpful, they have not, for the most part, done me harm. The same cannot be said for my forays into western medicine.
In conjunction with the American Recall Centre‘s current awareness campaign for medication safety, today I feel compelled to write more about my experiences with western medicine: the good, the bad, and the ugly.
With the exception of one neurologist (who, after offering no information or strategies said “Please pay today… I don’t do this out of the kindness of my heart you know”), my docs have been great. My GP, dentist, and headache specialist are some of the most hardworking, efficient, knowledgeable, and compassionate professionals I have ever met. Lucky me.
While many doctors are dismissive of chronic pain patients (we’re undeniably complicated and needy), I genuinely believe that my docs understand the gravity of my condition, and have gone out of their way to give me the best possible care with the tools they have.
No doubt, like me, they are frustrated by the limitations of western medicine and wish that they had simpler, more concrete answers. But despite any failings, I believe every single drug and procedure they have offered has been coated with the sincere hope that it will lessen my pain.
By taking the time to listen to my concerns and answer them to the best of their abilities, they have, at the very least, made me feel believed and supported. This is a demonstration of their outstanding character and professionalism, and for that I will be forever grateful.
For over a year I’ve been taking a low daily dose of amitriptyline, an “SSRI re-uptake inhibitor” (i.e. a serotonin-regulating anti-depressant) as an off-label daily preventative for chronic migraine. It has been helpful in the sleep department, but waking up with dry mouth and adjusting to some modest weight gain has not been super fun.
While this treatment option makes sense to me (pain and depression often go hand in hand) and has helped somewhat with the pain, finding the right dosage, remembering to take it every night at the same time, and dealing with the side effects has been a mild pain in the behind.
Some of the drugs and procedures prescribed to me have cause more pain and exacerbated symptoms of depression.
Initially, when I went to my GP with episodic migraine, he suggested triptans to ease the pain. He did not warn me about the dangers of medication overuse headache except according to the warning label on the medication. This warning was insufficient. I have since learned from my headache specialist that medication overuse headache can happen with certain drugs with as few as two doses per week. I was taking triptans several times per week.
When the efficacy of the triptans waned and I was routinely disabled by pain I returned to the doctor desperate to take whatever pain medication he would give me. I came home that day with a big fat bottle of T3s. These were incredibly effective at first. Then not so much. Then not at all, and I was constipated (!) on top of being in excruciating pain.
Then I went from having pain attacks a few times a week to having severe attacks every. single. day.
Medication overuse! It’s a bad scene. I probably should’ve been offered a daily preventative at the get-go, but that is not currently the first line of defence for general practitioners dealing with episodic migraine, and perhaps that needs to change.
More recently, I was encouraged to try topomax (topiramate), an off-label epilepsy medication, as a daily preventative on top of my daily dose of amitriptyline. I took a low dose daily for one month. For the entire time that I was on this drug I felt uncharacteristically depressed. Not only was I lethargic and unmotivated, but I started to wallow in the type of self-loathing I haven’t felt since I was 15. I wasn’t enjoying my job, my home, or my friends. The urge to isolate myself and withdraw from any glimmer of society was strong. Too strong. During week three, I promised myself that if I continued to feel this way in a week’s time that I would stop the medication, go see a therapist, or both. I stopped the medication, and despite a spike in head pain, I immediately felt like myself again. In more pain, but with the will to live.
Oh yeah, and then there were those shots of anaesthetic to the jaw at the dentist causing that hours-of-crying, life-draining, “pit of despair” kind of pain, followed by….let’s see…not a single benefit.
So, drugs have not always been my friend, but I haven’t given up on them entirely, so…
Over the course of these last two years feeling like a professional guinea pi- I mean patient, I have learned a few strategies for future visits to the doctor’s:
- Ask ALL the questions, like, at what point should I stop taking this medication? Is it safe for me to do so abruptly? What side effects should I have my loved ones look out for in case I can’t perceive them? What dangers could there be that are not on the label?
- Approach my pharmacist with a list of all medications before adding a new one. In my experience, pharmacists provide a much more detailed run-down than doctors when it comes to drug interactions.
- Visit Patients Like Me and search each newly recommended procedure and medication to see feedback from others with similar symptoms. While this might not be the most reliable source on the planet, it’s at least a good starting point.
- Most of all, I will continue to cultivate a reasonable mistrust of Big Pharma, a money guzzling industry that has been proven again and again to be just a little bit evil, instead opting for do-no-harm “alternative” and “natural” treatment options whenever possible.
Which meds have caused you more grief than good?