This is a reader-submitted story.
1. My diagnosis is: Chronic Severe Migraine with Aura and Episodic Hemiplegic Migraine
2. My migraine attack frequency is: I have migraine almost daily, either via a new episode or an extended one that stretches over a 48-72 hour period
3. I was diagnosed in: 1996 I was diagnosed by my primary physician; however, it wasn’t until summer 2003 that I had my first hemiplegic episode and the following year, 2004, one of the top neurologists in the US diagnosed me as “Chronic Severe” and told me that the bad headaches I experienced off and on as a child for a few years in the early 1970’s (I used to sometimes get headaches so bad that I could barely function; and the Dr kept saying maybe I needed glasses! after a 2nd visit, the eye dr said “he has 20/20 vision; stop bringing him here wasting your money!) were actually migraines; but in those days, he said Drs rarely ever diagnosed children with migraines.
4. My comorbid conditions include: Depression. It gets really bad!
5. I take _3___ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack. Over the course of the past 11 years of my migraine journey, I’ve tried 7 different prevention meds and 6 different treatment meds. Some worked for a while then stopped; and some never worked at all.
6. My first migraine attack was: as I explained above, it was actually around age 6, in 1970
7. My most disabling migraine symptoms are: Head pain and throbbing; neck stiffness; tingling/numbness; extreme fatigue; nausea; very sensitive to lights and smells; and over the past year, I’ve begun experiencing Vertigo, I also find my concentration and focus is severely diminished
8. My strangest migraine symptoms are: Cravings and more cravings; constantly thirsty!
9. My biggest migraine triggers are: certain lighting; ANY trace of cigarette smoke; smells certain cooked foods (esp. eggs and hot coffee); that’s just for starters; not to mention stress and aggravation
10. I know a migraine attack is coming on when: the back of my neck begins to stiffen, and the back of my neck at the base just below/in the indentation of my head begins to pulsate; at that point, I know its ON! often times this will occur before an aura.
11. The most frustrating part about having a migraine attack is: having to completely alter a day; either thru decreased productivity or total shutdown
12. During a migraine attack, I worry most about: how much further I’m falling behind; and how I have to cancel something planned with my children and/or family
13. When I think about migraine between attacks, I think: I’m grateful for a pain-free moment or day; lets play catch up!
14. When I tell someone I have migraine, the response is usually: I’m sorry to hear that.
15. When someone tells me they have migraine, I think: I only hear this from a few people who call a “bad headache” a migraine; so I try to be empathetic, but knowing almost for certain that they have NEVER had a migraine. They have no clue.
16. When I see commercials about migraine treatments, I think: Been there, done that; next?!
17. My best coping tools are: rest, quiet, more rest and just disconnecting from people and things as much as possible
18. I find comfort in: some of my family members and a few close friends that get it! also, knowing that I’ve always found a way to bounce back, even from the worst episodes, ER visits, hospitalizations, etc.
19. I get angry when people say: Oh, I get bad headaches sometimes too. Or when they want to suggest every “Grandmas remedy” or other “cure”, (oils, foods, sleep techniques, clothing!…………..) most all of which I’ve already tried at some point.
20. I like it when people say: “I can’t imagine what you’re going through; if there’s anything I can do, let me know.” I always appreciate that.
21. Something kind someone can do for me during a migraine attack is: Allow me space to just “be”, and not take it personal if I seem aloof or detached.
22. The best thing(s) a doctor has ever said to me about migraine is:We’ll keep trying til we find some relief for you.
23. The hardest thing to accept about having migraine is: its the ONLY health challenge I have, yet, its disrupted much of my adult life and has impacted me financially.
24. Migraine has taught me: the value of being appreciative and accepting what I can’t control; and most importantly, the value of time!! Be as productive as you can be, on the good days, as they are not promised.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: It hasn’t killed me yet, so truly I am stronger. I don’t “suffer” from migraines; I am a “migraine warrior”,
26. If I could go back to the early days of my diagnosis, I would tell myself: prepare for this to get worse before it gets any better
27. The people who support me most are: my family members, including my best friend and confidant who is not a “blood relative”
28. The thing I most wish people understood about migraine is: It’s not “just a bad headache”, and I truly have no control of it, and migraine disease has no rhyme or reason. The brain is beyond complex!
29. Migraine and Headache Awareness Month is important to me because: It raises awareness and moves us closer towards a public conversation and acceptance of migraine disease as a “thing” within the mainstream society.
30. One more thing I’d like to say about life with migraine is: Be grateful to the Creator for each pain-free day you have, each family member and friend who gets it, and certainly for each employer,director/ manager/supervisor, teacher, business associate, etc., who also gets it. Sad reality is, they are few and far between
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.