This is a reader-submitted story.
1. My diagnosis is: Complicated Migraine with Aura … A) Intractable/Constant Migraine – this one for 2 years now; B) Thunderclap Episodes – typically about 2-3 a day; C) Ocular Migraines, both eyes; left worse than right.
2. My migraine attack frequency is: 24/7 for 2 years now for this one particular migraine.
3. I was diagnosed in: At this level started with the first hospitalization with a stroke-like Complicated Migraine Neurological Event on 10/2010.
4. My comorbid conditions include: The one that keeps me from medication help = Erythema Multiforme type of allergic reaction to just about anything (even vitamins and supplements), including migraine interruptive and preventative medicines (and Botox for Migraine).
5. I take zero medications/supplements each day for prevention and zero medications/supplements to treat an acute attack = See Answer #4.
6. My first migraine attack was: As a child.
7. My most disabling migraine symptoms are: My whole body system is affected after all this time. The most discouraging is that I can’t go into any place that echoes or where there is a lot of lights, noise, or people activity — to the point that I even have a short window where I can be in a grocery store/Walmart (on a functional day) before I start getting disoriented/shutting down. This keeps me from anything from group social activities to even being in a staircase area.
8. My strangest migraine symptoms are: It just gets me now how little of the lights, noise, people activity, echoing effect, smells, flashing lights, etc., it takes for me to start to get disoriented/shutting down at this point.
9. My biggest migraine triggers are: Lights, noise, people activity, echoing effect, smells, flashing lights, some food items, along with other environmental items.
10. I know a migraine attack is coming on when: [N/A since it never stops.]
11. The most frustrating part about having a migraine attack is: Such a constrictive lifestyle along with the pain, the 24/7 aura, and the darkened and blurry vision with the ocular migraines; also the instant sledge-hammer pain and super nausea and weakness caused by the Thunderclap Episodes which happen day or night without warning.
12. During a migraine attack, I worry most about: Vomiting or crying – which doesn’t help at all and, at least for me, certainly makes things worse because once I start, I can’t stop. Also that I’ll go into one of the Complicated Migraine neurological events.
13. When I think about migraine between attacks, I think: [N/A – there is no such thing as an in-between attacks for me.]
14. When I tell someone I have migraine, the response is usually: “I know my aunt’s brother’s sister’s co-worker’s neighbor who was cured by __________. I know if you did it, you would be cured instantly as well.”
15. When someone tells me they have migraine, I think: Oh, that poor thing; Lord help them.
16. When I see commercials about migraine treatments, I think: I wish.
17. My best coping tools are: My faith in a good and sovereign God, and my trust that Jesus is in charge of me –not the pain and migraine disorders, not all the risk factors they like to tell us.
18. I find comfort in: See #17. Also my family and friends. When I can see well enough, my enjoyable activities for distracting and occupying myself.
19. I get angry when people say: See #14. And then when they won’t drop it, even when I say that after 5 years at this level, I have tried everything that I could afford or insurance would cover, then when I don’t jump on their suggestion, and they look and me and say, “Don’t you want the pain to go away?” Really??!!!
20. I like it when people say: “I’m praying for you.” Or, “I just wish you didn’t have that awful stuff” (lovely concern and thoughtfulness). Or my sister saying, “Let me come and get you and we’ll get out and about some today (knowing that our outing will completely wrap around migraine issues).
21. Something kind someone can do for me during a migraine attack is: Just look at my eyes to make sure I’m functioning at a level I should be, or if not, talk with me on what to do, or take me by the hand and unobtrusively get me to a safe and quiet place and just wait with me until I’m back. My family pays for me to have Netflix so that I don’t have all those flashing commercials; and a friend bought me ChromeCast so that I can watch it on my TV.
22. The best thing(s) a doctor has ever said to me about migraine is: After trying everything that insurance will cover, my neurologist researched natural supplements, and went himself to the health food store and purchased for me a bottle of supplements to try… Now that’s a concerned and involved healthcare professional!
23. The hardest thing to accept about having migraine is: AURA — 24/7 aura, Alice in Wonderland aura, multiple aura sizes, shapes, moving, undulating, flashing, electrical effects constantly going on all at the same time, trying to sleep through aura, and trying to see through aura.
Besides the aura, the pain, lack of functionality, and loss of decent eyesight.
At this level I don’t have much of a life, and even when I try to, I am so limited in what I can try/do; and there are only a couple of people who can take being with someone who may or may not start getting disoriented and/or shutting down when out and about, or willing to exit at a moment’s notice if I find myself strongly reacting to something.
24. Migraine has taught me: Everyone has something; or if it’s not them, it’s someone they love – people are struggling everywhere. Mine happens to be excessive migraine-related issues.
Today I’ll just do what I can and flow with what is, and try to add whatever bit of life to my life that I can.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: The Lord’s mercies are new every morning; great is HIS faithfulness.
Jesus is my Good Shepherd — and He calls His own sheep by name… I’m not in this alone in this.
“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says, ‘I’ll try again
26. If I could go back to the early days of my diagnosis, I would tell myself: Stress makes things worse – be much more gentle and accepting of myself as I am, not as I “should be.”
27. The people who support me most are:
28. The thing I most wish people understood about migraine is: It’s as similar to a headache as a destroyer is to a fishing boat. It is a neurological disorder and its affects are systemic; calling me “one of those loony tunes” is so not helpful. It is good for me to laugh or do something fun even with head pain and not seeing well – my heart needs it!!
29. Migraine and Headache Awareness Month is important to me because: Like any other disorder or disease, trying to obtain awareness/understanding and research for helpful medical discoveries is so very important.
30. One more thing I’d like to say about life with migraine is: Yes, of course, I do realize that it is scary looking when I get a bit disoriented or start to shut down, I am certainly not insensitive to that; but within a few minutes of being out of that particular trigger environment, I’m functional enough to decide the next move. It is do-able and I would be so grateful not to be so isolated.
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.