drugs, drugs, drugs part 2

ARC_Talk_About_Meds_Banner_Anna

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.

The Good

the good

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.

The Bad

the bad

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.

The Ugly

ugly

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…

What Next?

what next?

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:

  1. 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?
  2. 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.
  3. 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.
  4. 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?

-Anna

7 comments

  1. Really good information, thank you. I wish I would have read this when I was prescribed topomax, it would have given me a great personal insight into the possible side effects. I chose not to take it after reading the basic label warnings/possible side effects, of course second guessing if my gut feeling was right. And hearing your account, those were the things I feared would happen to me. I have since found other avenues of migraine relief. Thank you for sharing your experiences.

    1. I’m glad you have found other avenues for relief! That can take so long…

      I know despite the possible side effects of Topomax, it does make a huge difference in pain for people. There’s just no one-size-fits-all as far as I can see.

      Cheers,

      Anna

  2. lynnesherman · · Reply

    Oh my, we have walked the same tortuous path…and with no relief. Topomax and any tricyclic anti-depressants were horrible for me and I would rather suffer the migraines than deal with the emotional and mental side effects of those drugs. I don’t know who these drugs work for, as I have yet to meet a migraine sufferer who they helped. As for pain medication, anyone who has suffered the dreaded “rebound” headache caused by overuse knows too well the overwhelming pain caused by pain medication. Crazy stuff…
    I still use my tried and true 4 things to try before I take a pill: food, caffeine, fresh air, and exercise.
    Oh yes, turns out cute things really lift my spirits, like that adorable kitten you used in this post! The one for “What Next” is almost too much cuteness to bear….thanks for the smiles and the post!

    1. I have actually been finding lately that if I go for a walk as soon as I feel an attack coming on, it lessens the symptoms! Funny you should mention exercise. Sometimes it’s trigger though… such a fine line.

      “Overwhelming pain caused by pain medication” … There’s a side effect they don’t include in the warning label. Crooks.

      Hope you have a great weekend.

  3. Beth Waugh · · Reply

    I have three different triggers: lactose, pressure changes (weather) and hormonal fluctuations. I so far haven’t been able to get rid of them entirely, so I have been taking elitriptan as needed (any migraine over a 6/10) since 2011. It’s slowly starting to be less effective, and I dread the day it doesn’t work anymore. Thankfully, I have found natural supplements which are helping with one symptom for my weather and lactose migraines so I don’t have to take the elitriptan as often.

    I take a daily dose of feverfew (one that’s specially made for me, NOT cut with lactose monohydrate – I found that out the hard way), a dose of vitamin B2 (riboflavin), a dose of magnesium (half the daily recommendation) and also something natural for cortisol/adrenal function (I figure it can’t hurt to help manage stress). With these, the pounding pain in my head on the trigger days is actually around a 2-3/10 vs. the 8-9/10 I would usually have. I can only tell this is working because I still have the other issues (scent sensitive, light sensitive, feel like I’ve been hit by a truck, can’t stand up straight, slurring my words, mixing up words, can’t find my words, etc) … but at least I can get out the door in the morning. It makes for an interesting day at work though, as anyone else with those symptoms looks/sounds kind of drunk ;). If I could figure out how to lessen the menstrual cycles migraines, I’d end a 20+ year run of this ‘game’.

    I’ll be honest though, perhaps because they started for me so early in life (I’m 33 now, and can remember having issues back in elementary school)… I’ve never considered myself as a sufferer of chronic pain. I’m not sure if that’s a blessing or perhaps just something I’m too stubborn to admit.

    Although I’m sure you’ve tried many many things, I couldn’t find a list anywhere on your great site/journal so I thought I’d throw them out there, just in case

    (yup, the “Waugh” is of Glenn Waugh… my DH)

    1. Hi Beth Waugh! (And hi to Glenn!)

      I use some of the same strategies. I guess I’ve resisted posting a list of my own because it feels so transient… it’s hard to know what supplement or routine is going to have any sort of lasting power.

      The hormones played a major part in my attacks too until I opted to take birth control (with one steady does of estrogen rather than one that mimics a regular cycle) on a schedule so that I don’t get my period. That might sound crazy… it did to me at first and kind of still does, but it’s also been a life saver. Period migraines were the WORST.

      I’ve been steadily on the Magnesium (600mg), petadolex (butterbur), and B2. I’ve also taken feverfew, CoQ10, herbal gaba, and ashwagandha. I had to scale back because it was so costly and I had no idea what was working!

      My specialist is all about the first three. Good science to back those up she says.

      All the best to you. Thanks for reading and hope to stay in touch about our migraine woes and triumphs 🙂 🙂

  4. The dreaded topamax.. I lie to my doctor about taking it. Or at least the amount he wants me to take. They STARTED me on such a high does that it felt like my hands were on the wrong arms. (I had a TIA) I couldn’t drive my car, I would start dinner and forget that I had.. My days of mutli-tasking were over. I almost burned down the house. Almost wrecked the car more than once. But “you’re doctor has deemed that the side effects are less risky than the effect of not taking this medication”. Are you kidding me???

    Fast forward to six-ish years later when my teenage son develops a migraine variant and also doesn’t respond to migraine medications. I learned MORE than I could ever imagine about migraines. Went back to my doctor and said.. try again.

    Now, I couldn’t be happier. I do the botox injections. Which yes are scary. But worked wonders, for me. But I still have pretty bad lingering side effects from the topamax.

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