Earlier tonight, I shared The Excedrin Migraine Experience on my personal Facebook page. If you haven’t watched it yet, go ahead, I’ll wait here! Back? OK. So glad you made it!
My feelings about the video, and the medication it’s tied to are extremely conflicted.
First, the good (always). I am so thankful to Excedrin for shedding light on the fact that migraine is not “just a headache.” Migraine is a neurological disease. Head pain is just one of the many symptoms, and it can range from non-existent to severe in nature. There is a long list of other possible symptoms* including but not limited to: nausea, vomiting, vertigo, lightheadedness, aphasia (forgetting your words), and allodynia (when everything down to your hair hurts when touched).
For me, migraine comes secondary to Ehlers-Danlos Syndrome, but for many it comes alone, a product of their genes. My current migraine diagnosis is Intractable Migraine with Persistent Aura without Infarction. Let me translate for you. Intractable means all of the time. Every minute of every day, I experience symptoms of migraine. Persistent aura means that in addition to the pain, and the unrelenting nausea, I live with the constant presence of sparkling lights in my field of vision. When new doctors read this they usually ask “even right now?” I politely say yes and smile. They are my constant companion, even as I write this post, I fight to see through them.That last part (without infarction) means that I haven’t had a stroke yet. They have to note this because migraine, and especially migraine with persistent aura comes with risks. Here lies the reality that many people do not realize about migraine. Migraine is not remotely just a headache, it can be a life threatening condition. It causes strokes. It can also cause seizures. People die from these complications.
So THIS is why Excedrin’s advertisements rub me. Yes, I’m so happy that they are spreading awareness about the fact that this condition is more than a headache, but they also imply that migraine can be fixed by taking a couple of the over-the-counter pills. For a lot of people, my self included, Excedrin will never be enough. Furthermore, If you take Excedrin too much, it can actually cause rebound headaches** that are difficult to treat. This is why Excedrin is not even a part of my migraine tool kit. The things that are helpful for me do not come over-the-counter. They include more than 30 pills a day, injections of Botox (a deadly toxin), injections of pain and nausea medications, nerve block (steroid and analgesic) injections, stints of IV treatment when the injections aren’t enough, physical therapy, and hospitalization when all of that doesn’t cut it. Soon, I will have a radiofrequency ablation (RFA). That means that I am going to let a doctor burn away my nerve endings. I hope that it helps, but the reality is that for many of us, nothing we try is enough to beat this monster. There is NO CURE for this disease. There is not even an approved medication that is designed specifically to prevent the changes in the brain that result in migraine (although this is coming). All of my migraine medications are prescribed off-label. Borrowed from another disease or cause that gets more attention.
I am grateful to Excedrin for bringing some of that attention towards us, but now that its here I need everyone who is willing to listen to understand that for a great many of us, Excedrin will never be enough. We need more. More awareness, more understanding, more research, more potential solutions to this problem that affects so many, but carries so much stigma. Migraine is not our fault.
*You can learn more about the symptoms of migraine here: Migraine.com
** Here you can read about the dangers of rebound headaches, and what causes them.
I'm Sara,
bibliophile,
professional napper,
and disability advocate extraordinaire (kind of) aspiring to find happiness with chronic illness and pain. 
Oh Sara … I’m truly amazed at how eloquently you managed to describe not only your own crazy, unbelievable experiences with EDS and migraines but mine as well! Although I haven’t had the good fortune (or is it misfortune?) of having that lovely and lengthy official diagnostic label slapped on me, nor have I reached the point of RFA, I can relate to pretty much everything else you’ve been through. Ive just never talked about some things, like the ever-present sparkly lights in my peripheral vision, to my new raft of specialists … I think it’s been my fear of coming across as a hypochondriac that leads me to leave so much out during doctor visits. Maybe I will say more during my next appointment … or not.
Thank you for such a brilliant post … I will be sharing this with people that I know will appreciate learning more about what “the likes of us” go through! Stay strong!
Thanks so much. I’m honestly still shocked there are actually people reading lol. I completely understand the not articulating what you’re truly feeling to your doctors. I leave things out all the time, only giving each one what I think they are willing to listen to, what they need to do their job. I hope you find something that helps <3 Thanks for reading and sharing!
Excellently written article! I too suffer from Intractable Migraine with Persistent Aura and feel exactly the same way about the Excedrin VR and “Excedrin Migraine” OTC medication. I have had migraines for over 40 years as well as the “snowy vision.” When I’ve told my doctors before about my vision, they look at me like I am crazy. My ophthalmologist said, “That’s not your eyes, that’s some inside your head that can’t be fixed.” If you are interested here is an excellent link on research currently being performed on Visual snow.
Sorry I forgot the visual snow link……http://neuronresearch.net/vision/clinical/snowyvision.htm#aa
Interesting, Thank you for sharing. I have always been told that it is a migraine aura, that occurs in my brain rather than my eyes, because it appears even when I close my eyes. I do have an appointment with a new neuro-opthamologist coming up!
So happy to have found your blog. My sister-in-law (SIL) of 35 years has EDS. I know she lives with chronic pain but I’ve done a poor job of understanding and having compassion at times. I have a lot a questions about how you would suggest I be more productive in my communication with her. I often feel I’m just not getting it. Hopefully following your blog will give me insight.
I am only one person with EDS and my experiences cannot represent everyone’s, but I’m happy to help in any way I can! I’m not sure how open she is about her circumstances (I wasn’t always) but even then I’d have liked it if people were just open and asked any questions they might have! It’s never too late to learn! Sending love!
The only time an OTC helps me is when I have a mixed headache, for example migraine and tension. If it’s “just” a migraine, they don’t help at all that I can tell.
I am so very thrilled to tears to know I am not the only person suffering from the 24/7 pain and hands full of meds just to take the pain levels down from 100 to a 70 on good days. It effects EVERY aspect of what so called life I live. I am in my early 60’s now and have headaches since I was 5 years old. I am so very sick of trying to explain and convince the doctors that I am not telling them lies. You go into the office and slur your words and they think it is because I am taking too much pain killers. I have timed it out that I will make sure I take the maximum pills to control the pain and then walk into their office, speaking clearly, have my eyes open, and have no trouble with conversation. They smile and say, see, you’d do much better when you don’t take all those meds. After I tell them what I all took the just sit back in their chairs and don’t know what to say. I have gone through so many different meds and have sevier side effects. I am on a high dose of narcotics plus migraine pills to allow a will to live. My biggest fear is what will I do when my body gets used to this level of narcotics? They say there is nothing higher after this. I try not to think too much on that but I can tell already that it isn’t working quite as well as at first. With being 60 chances are I might still be around 10 years from now. But to know that there are others makes me feel that I am not a freek, I am just unlucky. Phyllis
Hi there! You are not alone 💜 Med Choice is a very personal thing and I am in no way judging you, but personally I’ve found that I do better without narcotics and instead on medications like Lyrica and Naltrexone. Still though I live with pain 24/7 and support whatever each unique person needs!
I don’t have the aura, but I have a migraine nearly everyday….or my head doesn’t feel “clear” to me. I call it clear when I can’t feel any symptoms coming on at all. I’ve gone to doctors for years. I’ve finally given up. I only go to get my prescriptions refilled. They tell me they’ve tried everything. They’ve given up too. It’s so frustrating.
I’ve also gone years with people not believing that I have the pain I do. Now my son has them. He started in 2nd grade. Mine started in 3rd grade. I feel terrible for him. He is 17 now, and his have eased quite a bit, thankfully.
My reaction to the Excedrin video was: That is even close to what happens to me! Excedrin wouldn’t even touch my pain either. I do have friends it works for though.
Hi Kari. I’m sorry you and your son have to deal with this beast too. Please though, don’t give up. I’m doing better now than I was when I wrote this, although I wouldn’t say I have any “clear” days. If your doctor says they’ve tried everything – they aren’t the right Doctor. If you don’t already, make sure you are seeing a headache specialist, not just a neurologist. Also, it took me more than a few tries to find the right group of headache specialists (locally and out of state) to help me! You can use this site to find a headache specialist near you:
http://www.achenet.org/resources/healthcare_professional_search/