Ever had a thought on the tip of your tongue but you can't figure it out? Imagine that, but with every single sentence you try to form. For migraine patients who have neurological complications with their migraines (like me), talking can be one of the most difficult tasks. Last week, I went to CVS to pick up a prescription and when asked for my birthday I gave the day and year as 96/1924. I didn’t even realize that I had said anything wrong until the pharmacist asked to verify my birthday for the second time. Simple questions like “are you okay?” and “how painful is it” can bring me to tears as I struggled to even form the words yes or no. The pressure that comes from having to quantify your pain when you can’t see, listen or speak without feeling like every cell in your body is on overdrive is stressful, adding to the pain of the migraine.

Now, I’m sure you’re thinking that there are pain scales to quantify your pain, a catch-all scale that provides “easy” ways to tell doctors your pain. Yet how easy is it to figure out whether your pain is a 9 or 10 when there seems to be almost no difference? To me, each migraine sufferer has a different pain scale. For example, what would be a 4 on the pain scale for me might be an 8 or 9 for someone else. Everyone tolerates pain differently.

Furthermore, when I am in a doctor’s office or ER and usually unable to communicate, eyes clamped shut to keep light out and trying to breathe and block out the loud beeping sounds and hustle of the office or ER, the last thing that I want to do is look at a chart and try to quantify my pain.

So how do we fix this? When I was a patient at Cedars-Sinai Pain Center, they had a numerical pain scale, but they also had words accompanying them. I could shake my head yes or no answering questions like “is the pain throbbing or shooting?” and “is it a dull pain or a sharp pain?” Through this way, it was much easier to convey how much pain that I was in, even though half the time I was getting ER treatments I was visibly in pain, crying and sometimes screaming.

When I was in the hospital in February for the blood clot, I made a joke to my ER doctor that that was the first time that I was in an ER and “actually had my brain.” She laughed, but didn’t totally get it, because she didn’t get how serious that my migraines were.  However, I was totally serious. In my own morbid sense of humor, I realized that this was the first time that I could truly advocate for myself. Countless times I had been refused treatment or given ibuprofen in ER’s because they would not understand how much pain I was in, or how to treat it no matter how much I said that I needed DHE or that my parents talked with the ER doctors and coordinated with all of my specialists. Over the years, I figured out a good way to try and line up the road to treatment by creating a series of notes on my phone or on a notecard in my wallet.

This notecard contains:

1) My full name

2) List of current medications and diagnoses including rescue meds;a way to denote your rescue meds is by putting PRN, which means “as the situation demands” is medical terms. Make sure to note when you take your meds; i.e. if you take them in the morning, put AM and the amount that you take. If you are unresponsive or cannot speak well, this gives the attending doctor information that can help them make medical decisions. 

3) Emergency protocol: what do you usually get if you go to the ER or, if you haven’t, ask your specialist what they would recommend for the ER doctors to follow in the case that you are not able to contact them while you’re at the ER

4) Phone numbers of your primary care physician and specialists

5) Emergency Contacts: have a list of friends, family and friends that the ER can call in case you have to go in alone. I cannot stress how important it is to have someone with you when you go to an ER. Having someone there with you can make a huge difference in your treatment, as they can help you advocate for yourself to get the treatment that you need, not just the bare minimum (or in some cases, being discharged before your needs are addressed).

Unfortunately, the U.S. medical system rests on the ability of the patient to advocate for themselves. Sometimes, this can lead to potentially dangerous situations, like how my blood clot almost went undetected twice because an ER refused to run tests on both separate occasions that I was there. It was only because I was stubborn and forced them to do something that they found the clot. Unfortunately, migraines are much trickier because they are not physical. You can measure blood pressure, sure. However, measuring the pain is another problem because there is no physical indicator and because it looks so different for every person. We need to change how hospitals and hospital systems evaluate pain, to create a more effective way to comprehend and explain pain. Patients need to be part of this process so we can create the best environment to assess and treat pain without placing more stress on those incapable of quantifying the pain.

I want to start a national revolution and conversation regard invisible illnesses and chronic pain. Do you want change this broken system? Join me as I raise awareness in June for Chronic Migraine and Daily Headache Awareness Month, on instagram + Facebook (chronicmigraineellie) and Twitter (hyphenated_dk).

As always, have an amazing, migraine free week!