To Treat and At What Expense

So, there’s a new treatment. There’s an old treatment. There’s something so many people swear by. Why haven’t you tried it yet? What’s the worst that can happen?

What’s the worst that can happen?

What if I told you no one is going to tell you about that.

What if you’re the person that doesn’t respond to anything?

My sister presented that idea to me a week or so back. I was reeling in pain from my latest trial, knowing it hadn’t been successful and not knowing how long the effects from it would last. But there it was. That small idea that has monumental implications.

And here’s the facts I know: I have responded positively to two medications, both of which I am on. My daily Keppra – which has the intended target group of epilepsy patients – works for me. I know that being off that medication results in constant level 8 – 10 pain that is of the ice pick stabbing me in the face variety. So, being on Keppra, I may have 7-8 regular pain, but it’s simply pulsing. I am not being stabbed. Second, my rescue medicine Fioricet also works for me. If I take it at the exact right stage of an attack, I can be in a drunken, slightly energetic, happy state for around 12 hours. But, I can only take it 9 times in a month, and it doesn’t always have any effect on my pain.

But they work.

Here’s the thing, every medication that exists has benefits and downsides. Each individual has to be able to decide which of those factors is most important and then they can move forward with treatment.

But, here’s the problem. Those factors can’t be analyzed until after you’ve decided to go through with a treatment. No doctor wants to scare you away from an option because 1% of users experience the negative downside to that medication.

So, here’s my breakdown, of all the meds (okay maybe not all), and the ups and downs and what I wish I’d known.

Amitriptyline – My first ever medication. It’s an antidepressant also used to treat various mental illnesses, fibromyalgia and migraine. This medicine had no impact on my migraines, and all I learned was that taking a medication for two years without any results is way too long of “trial” period for any medication.

Topamax – An anti-seizure medication that has a potential side effect of reducing migraine frequency. The adverse side effects than can occur in less than 10% of patients is the longest list of side effects I’ve ever come across. I happened to be very allergic to this medication, but many of the side effects mirror what migraine patients experience everyday with some additional common side effects like dramatic hair loss.

Propranolol – A blood pressure medication used for various heart related issues and in the prevention of migraines. My doctor didn’t even really tell me what this was, but the only thing I experienced was a dramatic change in my blood pressure and an elevated heart rate. Pair that with a sudden difficulty to walk up the stairs without being winded and the mental impact of experiencing depression I stopped this medication quickly. Feeling like I was two different people was enough of a downside to any help this medication could have had… but my migraines did get worse, so the help wasn’t there.

Cambia – A non-steroid based anti-inflammatory drug powder that works to decrease swelling, pain or fever. This stuff certainly works for the worst of pain attacks and it works relatively quickly. However, the side effect most noted is diarrhea. So, it’s a game of do I want the pain to stop now and spend all of tomorrow glued to the toilet or do I let the pain break naturally and suffer tremendously in the mean time? At the time I was taking this medication, losing the entire next day was out of the question.

DHE – a medication that narrows blood vessels in the head, used primarily to stop the throbbing associated with a migraine or headache. I’ve had this as both a nasal spray and an infusion. They both leave a terrible taste in your mouth, literally… you taste it for days. The nasal spray didn’t do anything, the infusions did some. However, the infusions you are receiving a larger dose and have to go in for multiple sessions. If inpatient care was an option, I’d opt for that. However, this drug makes you loopy, your balance is gone, nausea is at an all time high, and all you want to do is sleep and pee. Not a great option if you don’t have a caregiver to be there for you throughout the process. Once you’ve finished the infusions, you’re left feeling off for around a week, so if you go through with the recommended amount of infusions, you’re going to need at least 2 full weeks off of work.

CGRPs (Aimovig/Ajovy/Emgality) – The first drugs of their kind, designed specifically for treating and preventing migraines. These drugs are new to the market and the side effects and knowledge available to you by doctors leaves with the idea that you may have irritation at the injection site and constipation. I lost three months of my life to the fatigue, muscle spasms, appetite loss, nausea, hair loss, increased insomnia, changes in blood pressure, increased heart rate, and various other side effects from Aimovig. When I first started though, there wasn’t information out there from people who had taken it. I wish I had waited, and will wait before trying the other two options.

Botox – Injected into your forehead, temples, base of skull, and neck, this medication numbs the pain receptors in the muscles at targeted points known to impact migraine patients. However, this is not a viable treatment for all forms of migraine. If injected wrong, or if the medication moves entire muscles can be frozen. In my case, I now have a neck brace, lots of anti-inflammatory topical gel, and a neck massage tool working together to break down the medication left in my neck. I’m getting closer to the point where I may be safe to drive again, but the neck pain is heightened when migraines are present. The Botox also made my migraines worse.

This is just a small selection of the medications I’ve been on, but it is an important representation of something not too many people are familiar with.

Notice how many of them truly have nothing to do with migraines? Even Botox doesn’t have a documented correlation as to “why” it helps migraine patients.

But, after each one of these medications failed me and left me with uncomfortable side effects, I was able to research and find a huge community of people who also experienced these painful and sometimes life altering effects. I’m really big on research and before many of the medications I’ve started, I’ve done huge amounts of research.

But not the right research in the right frame of mind.

We’re told to be optimistic when it comes to our medications. We read that this or that only happens in less than 10% of patients. We see success rate in the 70 and 80 percentiles. But you see, there’s 38 million of us in the US. That means 3.8 million people are going to experience those adverse effects… That’s a huge amount of people and makes the 10% seem a whole lot bigger and whole lot more important.

We then go on to read the various studies that have been published. I was given the publication on Aimovig and the results with my medication and prior to taking it. All this positive information was at my fingertips, and I mean everything was there the control groups, how people responded to the placebo. Everything.

451. That is how many people completed the trails for Aimovig. That is a 0.000012% representation of migraine patients. But 60% of them responded really well and reduced their migraine days by an average of 6 days per month.

Do you see the contradictions in the way data is presented yet?

Do you see why doctors struggle to understand when we experience x and y as symptoms? I mean, my doctor may have 10 other patients he gave Aimovig to, and maybe 100 total patients in the whole Charleston area. So when I report my extremely adverse side effects, I become that 1 in a million patient and doctors don’t know how to respond to that.

So, do your research.

My gut screamed at me to never do Botox. My gut was right.

It’s okay to tell your doctor “no” and it’s even better to come in to appointments with questions pertaining to each side effect that concerns you and ask relevant questions regarding how many other patients your doctor has treated with that option and what symptoms they experienced. This gives you a reference for how broad his or her knowledge truly is in practice compared to medical journals.

You don’t have to be a test dummy, a lab rat, or a guinea pig.

For me, I’m left with no more options. But, I have a pretty good idea of where to go from here. I’ll focus on natural treatments, I’ll dig into every ounce of information available on medications used for migraine and find my own connections. I’ll pay attention to what’s coming out regarding new treatments, and I won’t jump in to them right off the bat.

The scientists don’t know what’s causing this, so in my opinion our guess is as good as theirs, because we’re the ones experiencing it all in the first place. Maybe our guess is better.


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