It’s June, and that means it’s time for another Migraine & Headache Awareness Month -#MHAM. I completed this challenge, which comes from The Daily Headache – personal blog of headache advocate Kerri Smyres, and shared it on my personal facebook page last year for #MHAM 2015. When I looked back, I realized a lot has changed since then and my answers are quite a bit different now. This is the nature of migraine disease, it’s progression is unpredictable and variable. Also, I have a broader audience now and I think sharing these kind of details about life with migraine is important. All that said, here we go:
1. My migraine/headache related diagnoses are: Intractable Migraine w/ Persistent Aura w/o Infarction, Chronic Migraine w/Aura, Migraine Associated Vertigo (MAV), Occipital Neuralgia, Cervicogenic Headahce (CGH), Cervical Spondylosis, Cervical Radiculopathy
2. My migraine attack frequency is: Daily. I no longer have periods without migraine symptoms. For a while this meant constant pain, but now I am thankful to say I do have moments without pain. Still, the silent symptoms of migraine such as visual and perceptual changes are always with me.
3. I was diagnosed in: In 2006, at the age of 18. My original diagnosis was episodic Basilar Type Migraine. My attacks were always severe, but only occurred about once a month.
4. My comorbid conditions include: Figuring this out is an ongoing jouney, but right now the answer is: Hypermobile Ehlers-Danlos Syndrome, Asthma, Chronic Idiopathic Urticaria, Fibromyalgia, Functional Dyspepsia, Gastroesopholgial Reflux Disease (GERD), Generalized Anxiety Disorder, Irritable Bowel Syndrome (IBS-C), Obsessive Compulsive Disorder (OCD), Major Depressive Disorder, and TMJ (Temporomandibular Joint Dysfunction)
5. I take 36 medications/supplements each day for prevention and 12 medications/supplements to treat an acute attack (Never all at once!)
6. My first migraine attack was: This is difficult to answer because its suspected that I had Abdominal Migraine during childhood that went undiagnosed. These attacks started around age 5-6. My first migraine that involved my head occurred in 20o6, at age 18.
7. My most disabling migraine symptoms are: Vertigo, cognitive dysfunction (brain fog) and visual changes such as double vision.
8. My strangest migraine symptoms are: Tinnitus (ringing in the ears) and numbness and weakness on the right side of my body. The first time this happened, I had to have a battery of tests to rule out stroke and MS. Now its just a part of my daily life.
9. My biggest migraine triggers are: Food triggers (alcohol, caffeine, gluten, dairy, processed meats etc…) and weather/pressure changes.
10. I know a migraine attack is coming on when: This question is sort of irrelevant now because I always have an aura. When I was younger, aura symptoms (visual and other perceptual changes) preceded a full blown migraine. Weather and pressure changes are often still predictive of a spike in the severity of my symptoms.
11. The most frustrating part about having a migraine attack is: The lack of control. It’s incredibly frustrating not to be able to do the things that you need or want to do.
12. During a migraine attack, I worry most about: What I “should” be doing. I’m trying really really hard to let go of this, and letting go of my career has helped in this matter, but it’s still hard.
13. When I think about migraine between attacks, I think: There is no more between attacks for me. I used to have anxiety about what would cause the next one, and when it would strike. This is one advantage of living with intractable migraine, I don’t worry about this so much anymore.
14. When I tell someone I have migraine, the response is usually: Still/Again? (Yep – This is my reality. Every moment of every day). When I tell someone it’s usually because I need help or accommodation or because I need to modify my schedule or environment. Please try to be understanding.
15. When someone tells me they have migraine, I think: I am so so sorry. I usually try to explain that I truly understand (if they don’t already know), because having people that “get it” in your life is a powerful thing.
16. When I see commercials about migraine treatments, I think: I wish it was that simple. You can read my thoughts on Excedrin’s latest ad campaign here: Why I’m Simultaneously Thankful for, and Infuriated by “The Excedrin Migraine Experience”
17. My best coping tools are: physical therapy, meditation, and hope.
18. I find comfort in: Knowing that I am not alone. I hate that other people suffer, but it is empowering to find support from others who have been down a similar road as you.
19. I get angry when people say: “It’s just a headache” – It’s not,it’s a neurological condition that has a multitude of symptoms and presentations, and for some people, like me, can be progressive in nature. Another thing that upsets me is when people claim to have a “cure” for migraine. There is no cure for migraine. There is not even a single available medication that was designed specifically to prevent it, although this is currently being researched.
20. I like it when people say: “It’s okay. I understand.” Heck, even if they don’t really understand, but are trying to – I am appreciative.
21. Something kind someone can do for me during a migraine attack is: Ask what they can do to help. Most the time the answer will be nothing, but it is always sincerely appreciated, and occasionally there is something someone can do to make it easier.
22. The best thing(s) a doctor has ever said to me about migraine is: There are promising treatments on the horizon. This gives me hope for my future.
23. The hardest thing to accept about having migraine is: The unpredictability of it all. My ability to function and level of disability change on a daily basis.
24. Migraine has taught me: To appreciate the small victories, and to revel the fleeting moments that are relatively pain/symptom free. I never thought that at 28 I would be proud to say that I am able to hold a part time job right now. Also, I’ve learned that what you do for a living should not be what defines you. If there comes a time when I can no longer hold that part-time job, that will be okay too. I have a myriad of other reasons to love myself.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: There are two that I’m big on at the moment – “Just keep swimming” (So excited for Finding Dory!) and H.O.P.E. (Hold On Pain Ends). That last one, its true, even if the pain lasts for months or years, it will eventually leave or subside, even if just for a few moments. It’s glorious when it does. Hang in there.
26. If I could go back to the early days of my diagnosis, I would tell myself: Find a headache specialist (not just a neurologist) who believes in you, and your potential to improve. Fire doctors who don’t believe what you tell them, or who are rude to you. You don’t have to put up with that.
27. The people who support me most are: My husband, and my parents. I have complete proof that their love is unconditional (not that I needed it).
28. The thing I most wish people understood about migraine is: It’s real, and It’s one of the most commonly occuring medical conditions that causes disability. The stigma surrounding it needs to end. It is not an excuse. It is recognized by the World Health Organization as one of the most disabling medical conditions. It’s impact is considered similar to that of dementia, quadriplegia, and active psychosis.
29. Migraine and Headache Awareness Month is important to me because: The only way to break the stigma about migraine is to speak out about what life with this condition is really like.
30. One more thing I’d like to say about life with migraine is: Although I now know that my migraine is related to my primary diagnosis of EDS, there are millions of Americans who live with migraine as a primary condition. It is no less disabling for this group of people. It is every bit as real. Migraine itself is a serious illness, and it deserves to be treated as such.
If you want to learn more about migraine in general here are some great resources: