30 Things meme

This is a reader-submitted story.

1.My diagnosis is: Intractable chronic migraines.
2.My migraine frequency: 3-4 days every week.
3. Was diagnosed in: Officially sometime in 1997.
4. My co-morbid conditions include: Hydrocephalus, with multiple shunt revisions, the last surgery was in 2004, when shunt was removed.
5.I take 5 medications/supplements each day for prevention and 9 medications/supplements to treat an acute attack.
6.My first migraine attack was: Can’t remember the exact date, but it was several years before the official diagnosis. Maybe 1993, 1994.
7.My most disabling migraine symptoms are: pain, nausea, light sensitivity, sensitive to smells and noise.
I feel like if I move I could vomit. Nurses don’t understand the light “sensitivity”. I Hate that terminology. It’s more like photophobia.
8.My strangest migraine symptoms are: I feel like every nerve in my body is exposed. I try to explain that it’s more than just a headache. But nobody believes me.
9.My biggest migraine triggers are: My migraines started after my first shunt revision in 1993, before that no headaches. Other triggers, weather changes is the big one. A strange one that I just recently noticed is onions cooking on the stove. The smell is too strong.
10. I know a migraine attack is coming on when: I don’t get aura’s. I usually always have some sort of mild headache pain, but when the nausea kicks in I know I better start with my anti nausea meds or its all over. I can go from a pain of 2-3, to 9-10, in 30 minutes at times . Other times I can have a mild headache for days that I’m treating at home before I have to go in for injectons, or for my infusion protocol.
11.The most frustrating part about having a migraine attack is: Wondering if this one will last 2-3 days, or if it’s going to last 2-3 weeks. Wondering what comments the nurses are going to make when I get to the infusion center.
12.During a migraine attack, I worry most about: Just praying that the meds work, so that the pain will at least be bearable, and I won’t vomit, and maybe I can at least get something on my stomache to stop the spiraling.
13 When I think about migraine between attacks, I think: Thankful that I don’t have one today. Each day is a gift, it’s up to you how you use it. I don’t dwell on my migraines when I don’t have them. Yes, they are a part of my life, but they don’t control my life
14.When I tell someone I have a migraine, the response is usually: Oh I’m so sorry, make sure you drink plenty of water. Call if you need something.( and then I usually don’t hear from them until my headache is over.) It’s like I have the plague or something.
15.When someone tells me they have a migraine, I think: Oh, I am so sorry! What can I do for you? My heart truly aches for them.
16.When I see commercials about migraine treatments, I think: I wish that would work for me.
17.My best coping tools are: Strong support system, faith, I like to go in a dark room, I do use a headset with piano music when I go in for infusions to drown out the noise of the IV, Nurses etc. Believe it or not, when I don’t have a headache, I don’t talk about them, and even when I have mild headaches I choose to not too about it. To not give it power, the more you talk about it, the more you become focused on the pain. I’m not saying to never talk about it. I m just selective.
18.I find comfort in: dark rooms, quiet rooms, warm blankets, soothing music ,(depending on pain level).
19.I get angry when people say: it’s just a headache.
You were in yesterday? Didn’t the meds help? Do you plan on coming in tomorrow too?
Why are you crying? Why do you need the lights off , you sat out in the waiting room for 45 minutes and the lights were on out there?
You have 30 seconds left before I can give you your med. I have every right to give you your med late if I want to.
20.I like it when people say: I can’t imagine living in the amount of pain you do every day.
Every time I see you you always have a smile on your face , and you never complain.
21.Something kind someone can do for me during an attack is: A friend once drove 2 hours just to sit with me during an attack that lasted 2 weeks. She brought soup, took me to an appt. Etc. Was nice to just have someone there.
22.The best thing a doctor has ever said to me about migraines: I believe you!!
23.The hardest thing to accept about having migraines: I had to go on disability, worked as a nurse for 10+ years. Loved my job. Miss my job.
24.Migraine has taught me: Perseverance.
25.The quotation,motto, mantra, or scripture that gets me through an attack: This too shall pass.
26.If I could go back to the early days of my diagnosis, I would tell myself: Hang in there. You are strong enough. You can do this. God has a plan for your life.
27.The people who support me most are: My best friends, Karen, LeAnn, Sheila, friends from church, my primary physician, family.
28.The thing I wish most people understood about migraine: Its so much more than just a headache, and what works for your headaches doesn’t necessarily work on mine.
29.Migraine and Headache Awareness Month is important because: So many people don’t understand and have misconceptions about migraines.
30.One more thing I would like to say about life with migraine is: As bad as some days get, the saying ” That which does not kill you makes you stronger” is true. Hoping for a cue, but have accepted them as a part of my life.

MHAMgiveawayReader-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.

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