When it comes to getting a diagnosis, a patient – physician relationship is critical. For many health concerns, tests and scans only go so far into providing insight into what’s wrong. Although bloodwork may show support that something is wrong, many of us wind up with conditions primarily diagnosed by symptom profiles.
Migraine is a great example of this.
I sit down and talk to my doctor and we run through my symptoms. Head pain – throbbing or stabbing in nature. Often accompanied by nausea, sensitivity to light and sound, cognitive impairments like difficulty concentrating, memory problems, and difficulty with speech and remembering words. Sometimes there’s dizziness. They ask about any numbness or tingling, this isn’t something I have. We talk about visual auras, also something I’ve never experienced.
Throughout this process we might get better words to describe some of these symptoms. The word issue is sometimes called aphasia, the dizziness fits well with vertigo.
Overall, we might decide to run a CT scan or have an MRI done. We might even consult with an ENT to make sure that the vertigo isn’t caused by anything ear related. These are mostly formalities to rule out other conditions – sometimes more life threatening.
We decide I have migraine. This comes about because the doctor listened to my explanation of what my body is doing, how it feels and trusts how I’m describing it. I in turn trust my doctor’s evaluation and we agree to begin treating migraine.
We have gotten this far based on matching a symptom profile to well known condition. Easy right?
So why then, does my doctor have enough trust to give me a diagnosis but not enough trust when we start trialing medications and I experience side effects?
I was trusted to know my body to get to where we knew we needed medication, but surely my ability to interpret my body ends the second medicine is introduced. And not only that, but once I start reporting side effects, the focus stops being on the condition we’re treating and if the medication is even helping that and becomes “this patient is more likely to experience side effects because they’ve researched them and have decided they will have them.” Interesting.
When I tried Topamax, I had side effects. This was the first time I’d experienced a negative reaction to a drug. It happened when I increased to my final high dose – this was a medication we tapered up on for about a month. At the highest dose I noticed numbness and tingling in my hands and lips. I lost my appetite and was incredibly nauseous. I was also experience extremely painful migraines that seemed to just get worse and worse.
We discontinued the medication unsure if I was having an allergic reaction to it with the stated reason of side effects. Topamax also did not improve my migraines as intended. The medication should be noted, or it should at least be included in the reasons for discontinuation, that it was ineffective in reducing the frequency, duration, and intensity of my migraine attacks.
I had never researched Topamax prior to starting it.
When I tried Aimovig, I had side effects. This was perhaps the most complicated medication because it was new to the market so all reports of side effects were anecdotal. I started Aimovig a month after being so incapacitated by my migraines that I had to leave school and work and move home, hoping to be approved for disability. That August my severe pain was occurring throughout 65% of the month. This can be defined as pain ranging from requiring medical intervention and rest, being limited in daily activities to being in severe pain confined to my bed, unable to eat or use the restroom. This marker of pain indicates being above a threshold of pain where I can function normally and doesn’t mean the other % of time I was in no pain.
When we jump to shortly after my second dose in October, my severe pain was occurring 84% of the time with over half being on the bedbound end of the severe spectrum. I was in more pain and my pain medications were working less than they had previously. This was accompanied by side effects including debilitating nausea, muscle spasms, bone pain, hair loss, and fatigue. At the time, these side effects did not match up with the medication, but studies have since documented that they are linked and occur in a small percent of patients.
I discontinued Aimovig because the drug was ineffective at reducing my frequency, duration, and intensity of migraine attacks. My doctor notated that we discontinued the medication due to side effects that I had read about that he didn’t believe were linked to the medication.
I had not researched Aimovig prior to starting, as there wasn’t anything to research beyond drug trials. I began researching once my symptoms were severe and I sought out patient groups focused on people sharing their experience with the new medications. This research happened after I was experiencing the side effects.
When I tried Botox a few months later, I was at the point as a patient that I wanted to fully investigate medications and potential risks involved. Prior to receiving the injections, my largest concern was neck pain being made worse. I already experienced a lot of muscle stiffness in my neck, so although this wasn’t a deal breaker, I wanted to know more. We decided that I would get Botox and a prescription for a muscle relaxer to have in case I did experience an increase in the neck pain.
Neck pain happened, muscle relaxer didn’t help. It would be two months before I could turn my head in both directions to the point where I could safely drive. The Botox also didn’t provide any relief.
We collectively decided not to continue with Botox treatments, but the notation in my chart says that I experienced the side effects I had read about. Because now, I had researched an invasive, long lasting therapy that I would be pursuing. This research was now a heavily notated part of my chart because it happened prior to getting the injections.
When we continued to talk about new treatments for migraine, I still had some options but they were in the same drug class as Aimovig. There was a new barrier simply because I had researched medication on my own. I remained hesitant regarding the side effects as I was encountering other people who experienced what I had and wasn’t willing to put my body through that again. My doctor however, believed that because I saw side effects I would inevitably experience them and until I got over that, I wouldn’t have success with the medications.
This is harmful. This discounts the other experiences with the drugs that demonstrated they had negative impacts on the disease we were treating. It was an implication that being an informed patient and knowing the risks before starting, meant that I would experience them in a sort of placebo manner. It should also be mentioned that knowing the risks wasn’t automatically a reason to not start a drug, it was to start a conversation and get more information from my doctor and hear what his experience was.
When the abortive version of the same drug class came to the market I had absolutely no hesitation to try it for one singular reason: half life. The half life was so small that if I did experience side effects they wouldn’t have such a huge impact on my system as the preventative versions of the drugs. I had success with the new abortive and experienced none of the listed side effects. Certainly this doesn’t make sense as I had heavily researched the drug, dug into the drug trials, and had existing experience with the targeted area of therapy. Surely, I should have had the side effects simply because I knew they might happen.
But the side effect story doesn’t end there and it doesn’t only exist with migraine medications.
Briefly when I was trying to understand the widespread pain, we tried Gabapentin. At the lower dose, it was very well tolerated. As we increased the dose I had incredible amounts of brain fog and fatigue. This is incredibly common and often something people accept as a trade off if their pain is also being reduced. We noticed no improvement of pain and discontinued the drug. This was perhaps the only time side effects were notated alongside ineffectiveness of treatment for reason of discontinuation.
Which brings me to my arthritis medication, because of course I had side effects.
My initial response to Leflunomide was a small reduction in the inflammation – noted by my doctor, I didn’t notice it but trusted her evaluation. After two months, I had an increase in arthritis pain that spread to new areas. When I would eventually stop the drug, it was due to side effects. It was clearly notated that hair loss and hypertension were reasons to discontinue, but there was no mention that the drug wasn’t actually doing anything to help the arthritis.
Why, once again was it totally brushed aside that the drug wasn’t working?
I’ve been through dozens of medications and I’ve had 10x more discontinuations of medications because they simply had no effect than I do medications that had side effects, so why does every single doctor focus in on the handful of times I have had a reaction?
Why am I still being faced with doctors who don’t believe the side effect I am mentioning is due to the medication that directly correlates to the onset of a new symptom?
I’ve had hair loss twice now. It isn’t hard to do research and find text that is digestible by regular non-medical professionals that explains the connection between hair loss and medicine changes. The Aimovig one is less concrete, but was consistent with the 2 month timetable of when hair loss due to medication (or a chemical change in your body) had occurred. For Leflunomide, the drug targets the same type of cells as hair cells and hair loss is common. It also followed the 2-3 months of introduction for hair loss to begin occurring.
Same goes for heart palpitations on Amitriptyline and hypertension on Leflunomide. They are documented side effects that can occur, and yet doctors refuse to say this side effect – one that can actually be confirmed by taking my vitals – is caused by medication.
We must read the handout that comes with all of our pills. But if we experience those side effects, suddenly we do not know our bodies anymore.
The line of thinking makes no sense.
And so I go back to the initial diagnosis. Doctor’s listen and have to take our word for how our body feels because there is no test to show pain, to show nausea, to show light and sound sensitivities, and so on. But when it comes to side effects surely we’ve decided instead of our conditions improving and responding positively, the lack of response or negative response is twisted up into a note in our chart about patients who read about side effects on the internet.
Surely we are just confused. Maybe it’s just in our head.
Perhaps in our day to day lives of doing absolutely nothing and not leaving our homes because of a pandemic and managing our own chronic conditions, in our non-changing, completely and utterly boring, maybe I’ll stare at this wall instead today, so tired of eating the same exact food every week because even cooking is a lot of work, but the only thing that has changed was the introduction of this medication, surely there must be something else I’m missing in my day to day life that has changed that is giving me heart palpitations. Certainly not the medication where I’m for the first time ever experiencing a combination of the side effects on the pamphlet where it tells me to call my doctor immediately if I experience them…
Certainly not that…
It just couldn’t be the medication.
And certainly, not the medication that isn’t helping to begin with. Because we should just keep taking drugs that aren’t helping us. That’s how the system is designed. If you just ignored those (life threatening) side effects you would be better, even though your pain is increasing too.
And did we mention every drug we’ve put you on for your head pain had headache as a potential side effect?
Good luck kid.