This is a reader-submitted story.
1. My diagnosis is: Chronic Migraine, Extended Aura with Intractable Migraine
2. My migraine attack frequency is: Right now it is constant with symptoms and pain changing daily as I’m in an intractable migraine attack that started October 2013.
3. I was diagnosed in: 1994, but I’ve had them since 1964/65.
4. My comorbid conditions include: Depression, Anxiety, Panic Attacks, extremity neuropathy among other.
5. I take _many_ medications/supplements each day for prevention and _several___ medications/supplements to treat an acute attack
6. My first migraine attack was:1964 or 65, a warm spring day in the outskirts of Atlanta. I remember it well, my Dad and Uncle were changing out an engine in my Uncle’s 64/65 Baby Blue Ford Galaxy. We lived out on a dairy farm which had large oak trees they could put the chains around to life the engines in/out.
7. My most disabling migraine symptoms are: Paralysis, I have no sight, no hearing, no feeling, no control of everything on the left side of my body (my attacks are behind the right eye socket, just right to where the bridge of the nose joins the forehead. If not the paralysis it is the extreme degradation of cognitive functions.
8. My strangest migraine symptoms are: Time slows down. It is like I’m moving 3 times faster than everyone else or the whole world has slowed down to more than half its normal speed.
9. My biggest migraine triggers are: Not in any order by radical weather changes, bright or flashing lights, loud sounds especially the base, strong smells like gasoline, diesel, perfumes, colognes, and strenuous physical and/or mental exertion lasting over a couple of hours.
10. I know a migraine attack is coming on when: I have a wild mood swing. Normally I’m in a calm mood then all of a sudden I lash out about something totally trivial.
11. The most frustrating part about having a migraine attack is: Is this attack bad enough to take my rescue/abortive medication or should I just lie down a while and save the meds for a more severe attack, due to insurance companies rationing people with migraine disease to only 9 pills a month, and when you have 15 or more attack days in a month, rationing of meds becomes a necessity.
12. During a migraine attack, I worry most about: My wife, my children, my family, friends co-workers and how many important life changing events in their lives I’ve been forced to miss and lastly my job. When I do try to work during an attack I’m only about 20% effective.
13. When I think about migraine between attacks, I think: I hope this attacks goes away quickly so I can go to work tomorrow or so I can get some work done today.
14. When I tell someone I have migraine, the response is usually: Take a couple of aspirins, Tylenol, Aleve or something to that extent and it’ll be gone in an hour -or- there is no way a person can have that many headaches and I try to correct them stating it is not a headache, migraine is a neurological disease and I’m currently having an attack.
15. When someone tells me they have migraine, I think: Oh I know how that feels, I just hope they don’t have them as severe or as often as I do.
16. When I see commercials about migraine treatments, I think: What a joke, it is all about the bottom line for the stockholders and executives.
17. My best coping tools are: Try to ignore them and continue, but when you are a computer programmer by trade and cognitive functions are severely impaired it is very difficult to logically think through how the code needs to be written or function within the software or application.
18. I find comfort in: A dark, very cool (cold about 60-65) room with soft pillows, mattress and light cover to try to fall asleep, hoping it will be gone when I wake up.
19. I get angry when people say: It is just a headache or you are just trying to get out of working, traveling or attending an event, both from co-workers and family.
20. I like it when people say: I understand your pain and suffering.
21. Something kind someone can do for me during a migraine attack is: Just leave me alone, no touching, no noise, no light, no sound and no strong smells.
22. The best thing(s) a doctor has ever said to me about migraine is: I understand, I suffer from migraines also.
23. The hardest thing to accept about having migraine is: The important special events of life that I miss involving my wife, children, family, friends and co-workers. Life only comes around once and those events will never happen again.
24. Migraine has taught me: How to ration medications and to be patient. Getting angry and/or mad just makes the attack worse.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Maybe not today, but someday things will be better.
26. If I could go back to the early days of my diagnosis, I would tell myself: I’m not sure as I was 4 or 5 years old, and I didn’t know why my head and stomach would hurt so bad. I not sure my Mom understood but knew I was in pain and my Dad, I don’t think he understood it was not just a headache, but neither did a lot of physicians in those days.
27. The people who support me most are: Wife, Children, Headache Specialist. My wife and children understand, my wife tries to comfort me and my doctor tries to figure out how we can treat the disease next, as the treatments last at most six months before they become ineffective and we must try something else.
28. The thing I most wish people understood about migraine is: It is not just a headache, it is a neurological disease.
29. Migraine and Headache Awareness Month is important to me because: I know migraine disease is only important to those who suffer from the disease along with their families. To all the pharmaceutical companies, migraine disease is not something they want to spend the time and money to research as it is a difficult disease to treat and we are not having large sums of people dying from the disease.
30. One more thing I’d like to say about life with migraine is: I would not wish this disease on my worse enemy, if I had one. I would not want anyone to suffer from these attacks.
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.