What do you do when you run out of migraine pills? Share your experience in the Comments!
People have often told me I’m the healthiest sick person they know (or maybe it’s the sickest healthy person) because on migraine-free days I am hiking or singing or working or powering through the day with enthusiasm.
On my good days, I look fine-strong and healthy and maybe even happy.
They like to tell me I don’t look sick, but they don’t see me when I’m crumpled up in pain. My friends and family will often comment (sometimes snidely- although I don’t think they mean to be snide), that wow, I must be feeling better since they saw pictures on Facebook of my ten-mile hike. I tell them, that is what we migraine sufferers do, we appreciate our sacred good days and make the most of them. On good days we actually can feel like a healthy person.
We can be highly functioning and take part in normal activities. On the bad days, which for me can be up to three or four times a week, I can’t even think about exercise or work or socializing, and the people sharing living quarters with me can tell the rest of you that yes, I am indeed sick (I have spoken before about migraines being an invisible disability that no one except a migraine sufferer can understand).
No matter how hard my loved ones try to sympathize, they will still have expectations of me that I can’t meet. I don’t blame them, and I get their frustration because when I am able to rally I can be the life of the party. On good days, even I will forget that I have this disability, and I’ll make commitments I can’t keep. I say yes to the party, yes to the gig, yes to the hike, yes to the lunch or dinner, yes to the family reunion. Then I wake up with a migraine and have to say no.
Sadly, I could have many more good days if I didn’t have to worry about access to much-needed medication. Not just preventative meds, but the medications that stop the pain.
This morning I called my pharmacist to refill said medication. I am unfortunately on a first name basis at the pharmacy, being that I am there several times a month picking up various migraine treatments. The pharmacy manager had told me I’d be able to fill my prescription today, but when the technician tried to run it through, it was denied. Immediately I felt a panic surge through my veins and tears stinging my eyes. I almost snapped at the technician, but it’s not her fault.
It seems the insurance companies can dictate how many migraines I will have every month (they must not get it either – WE ARE SICK AND IT’S BEYOND OUR CONTROL!). I am allowed nine “triptans”, which are vaso-constrictors that help with the pain and inflammation, in a thirty day period.
Years ago this was plenty, and could even last me three or four months. Unfortunately, I now suffer from at least nine to twelve migraines a month, which is why I am on the hunt for a preventative treatment versus just pain relief.
I have been told part of the reason I have so many is that the very medication I take for the headaches causes rebound headaches, ugh, quite the Catch-22. I am always afraid I’m going to run out before I can get the prescription filled again, so I am careful as to how often I take them. I’m not sure why the limit is nine, especially when it says right on the label I can take them one to two times per day as needed.
You may think I’m sounding like a pain pill addict, but let me make this clear: Triptans are not a controlled substance, nor are they addictive. (And I find it ironic that addictive opiates are prescribed like candy). They provide immense relief for the chronic pain migraines bring on, and the constant feeling like my head is going to explode. Maybe it’s the cost or possible long-term side effects, but whatever it may be, I know I need to ration them and every single month it’s a huge source of stress.
Usually, if I take a triptan at the first sign of symptoms, my migraine will subside pretty quickly, but if I wait too long they aren’t as effective. Therein lies the problem. I’m afraid to take one if it’s not necessary, so I have to play the portioning game. Here is the conversation that goes through my mind: “Oh God, no, I feel like I’m getting a migraine, but maybe it’s just a tension headache, or allergies, or my sinuses. Should I take a pill? Maybe I’ll just start with Advil” (My mom’s remedy for just about all that ails us: aches and pains, sore throat, common cold, even the blues).
While I’m waiting for the Advil to kick in, I’ll lie on a heating pad, or dab some peppermint oil on a tissue and hold it under my nose. I’ll put a hot washcloth on my face. I’ll go for a walk, do some deep breathing, maybe take a nap (You see how even I am in denial, treating myself like a healthy person who maybe just has a “normal” a headache).
Guess what? None of these things work. One hundred percent of the time the “aura” (it differs for many people, for me, it’s just an overall feeling of malaise) turns into a full blown migraine. If you are a migraine sufferer, you will understand my dilemma, if not, you will never grasp the kind of agony we go through.
I wonder sometimes if anyone in the insurance companies has actually ever had a migraine (probably not). Taking a triptan is the only thing that gives most of us minor relief. If I run out and can’t refill them for a few days, I usually am desperate enough to pay out of pocket, which is twenty dollars a pill.
That may not sound like a lot of money, but remember, I am on Medicaid because I can’t work full time (something else people don’t get-“Well you seem healthy enough to work…”). Twenty dollars a few times a month add up.
The thing is, it’s not like I want to take this medicine. It may help a headache, but it makes me tired and nauseous, and who knows what it’s doing to my liver. I’ve tried everything to prevent the migraines (see my previous stories-Botox, anti-seizure meds, diet changes, etc), and so far nothing has worked.
If I could get all the time back I’ve spent in doctor’s offices chasing remedies I could probably add ten years to my life. I am hopeful that a new treatment, will be helpful, but we all know the insurance companies will take forever to approve it, and the out of pocket price is something like five hundred dollars a month! I imagine Medicaid won’t even cover it. Apparently only the rich get relief.
So, back to the pharmacy story: I was finally able to get three pills, much to the discouragement of the pharmacist. “If you can hold off two more weeks you’ll get all nine pills.” What, pray? Tell me what do I do for the next two weeks? Lay in bed suffering, waiting for my brain to burst out of my skull?
The pills may not be a cure-all, but they do enable me to get on with my life at a mediocre level. (The pharmacist is another one who treats me like I am a healthy person: he or she only sees me when I am feeling fine). I told her to just give me my three triptans, and I’ll take my chances. Meanwhile, tonight I am fighting a migraine, afraid to take one of only three precious pills, and I am lying here wondering, was it something I ate or drank? Should I stop my estrogen? Is it stress? Have I been on the computer too long? In other words, is it my fault? Is it something I’m doing what I can stop doing? But I know, deep down, that it’s just genetics, bad luck, and that if it was something I was doing I would’ve figured it out by now.
I wish sometimes that these doctors would see me when I’m sick and get that I am not a healthy person who suffers from an occasional headache. It’s ironic that when I have a scheduled appointment, I feel perfectly fine. When I go for MRIs I feel fine. When I am lying in bed miserable the last thing I want to do is leave the house, but it might be worth it for the medical professionals to see the wrecked state I’m in.
For now, all I can do is forgive myself, forgive the doctors that can’t help me, forgive the insurance companies that have no heart or soul, forgive the bossy pharmacy lady, close my eyes and pray for a cure. I mean really, how long can I play this game? Surely it won’t be forty years, like my poor aunt (who I always thought was a “healthy” person because I never saw her when she was suffering). As tired as I am of searching for answers, I will not give up. Right now, I’m going to take this pill so the throbbing behind my eyes goes away, take a deep breath, go to sleep, and hope tomorrow I feel good enough to impersonate that healthy person everyone sees on Facebook.
Peace, Love, and Namaste,
Sunnie
What do you do when you run out of migraine pills? Share your experience in the Comments!
Source: CureUp
