This is a reader-submitted story.
1. My diagnosis is: I have been diagnosed with migraine with aura, chronic migraine, and just recently cluster headaches.
2. My migraine attack frequency is: It use to be daily but is now about 2 times per week [depends] but without any treatment i use to get over 10+ migraines per month and at least 8 cluster headaches per month at the moment it seems cluster headaches are in remission
3. I was diagnosed in: My ‘formal’ diagnoses was in 1982 and the cluster headache in 2014
4. My comorbid conditions include: I have several comorbid conditions I have fibromyaliga, restless leg syndrome and depression I also suffer with chronic pain due to an accident in 2000 Light sensitivity that never seems to go away and I cant stand loud noises
5. I take a mixture of pain meds that help with the attacks I have 1 tablet I take each morning to stop the cluster headache [seems to work so far] I have an abortive system to take to try and stop the migraine from starting
6. My first migraine attack was: When I was 4 years old I can’t remember but i do remember them in early childhood i use to hold my head and scream i know now that would have only made them worse My mother was told i was only seeking attention Yet i do remember them so well even when so young all my mother could do was give me disprin as I got older they got worse and i missed so much school
7. My most disabling migraine symptoms are: Light sensitivity, and the Throbbing in my head I also cannot think and I lose sight in my right eye I try to keep going in the early stages but when the pain really sets in i go to my dark room and close out the world sometimes for days at a time
8. My strangest migraine symptoms are: Pins and needles in my face and my head feels so heavy i often need a neck brace as I feel i cannot hold it up I cant think nor speak simple instructions are impossible to understand
9. My biggest migraine triggers are: Lack of sleep, sweet sickly smells and loud constant noises
10. I know a migraine attack is coming on when: I get very moody and cry at the drop of a hat
11. The most frustrating part about having a migraine attack is: No body believes me and It’s hard to wait for the right time to take abortive medicine when I know what’s coming. Too soon and it won’t work at all Too late and it won’t work either. And is it a migraine or a cluster not knowing which makes it hard to now what meds to take
12. During a migraine attack, I worry most about: What needs to be done, being so useless to anyone including myself
13. When I think about migraine between attacks, I think: When is the next one going to start how much can i get done between attacks to try and get ahead [doesn’t work but i try]
14. When I tell someone I have migraine, the response is usually:“Yeah, I get those, too,” It’s makes me so angry because most of the time the person has no idea They say oh try this or that and it works for me but Ive been there tried that doesn’t work for me
15. When someone tells me they have migraine, I think: Really i asked a few simple questions and realize they don’t have a clue what a migraine really is But if they actually have migraine attacks i listen with interest to what they have to say
16. When I see commercials about migraine treatments, I think: You make it seem so simple to manage….. no wonder people think migraine is just another headache I switch channels its such dribble
17. My best coping tools are: Just giving up and going to bed with my heat packs ice packs and meds
18. I find comfort in: My bed My backup plan and my pre-pack bag of comfort items
19. I get angry when people say: its just another headache Your lazy you just enjoy staying in bed and scoffing off the government No I hate having to stay in bed I hate not being able to wake up refreshed each day Not wondering if ‘this’ is the day another will start I hate not being able to function like everyone seems to be able to do and I hate having to constantly having to cancel my plans
20. I like it when people say: It’s ok I’m there for you… [but they do live to far away to really be of help] but its a comfort to know someone really cares about you and doesn’t pity you and is willing to really listen and drive such a long way to be with you
21. Something kind someone can do for me during a migraine attack is: Leave me alone and let me recover but be there anyway {I realize that sounds confusing]
22. The best thing(s) a doctor has ever said to me about migraine is: They have not said anything to help me deal with this
23. The hardest thing to accept about having migraine is: How debilitating it is and the stigma that is attached to it There is no cure and Ill never know when another attack will start but i know it will sometime soon
24. Migraine has taught me: i am stronger than i think I must slow down I must take things easy and don’t fill my plate to full with to many things that need doing how I must pace myself
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This to will pass
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t just accept one doc’s diagnosis keep trying till you get the correct diagnosis and treatment which is hard in a rural town and the city is a long way away
27. The people who support me most are: Myself only……. I lost all my friends when migraine became chronic My friends now live in my computer
28. The thing I most wish people understood about migraine is: it is a real disease It has no cure Its lifelong I’m not someone who is on the pension cause I want to be i want to be normal without pain day in day out without the side effects and yes it can take me a couple of days to get over an attack then usually another starts its a cycle i cant get off
29. Migraine and Headache Awareness Month is important to me because: Finally people can see its real As some one else said For most of my life I’ve felt the stigma of migraine. I felt alone and misunderstood, as though somehow I brought this misery on myself. I don’t want one more person to ever feel that way again. I cant say it any better than that
30. One more thing I’d like to say about life with migraine is: Find the right treatment After 50 years of having migraine and not finding any treatment for almost 40 of those years I say get the right treatment find the right doctor who really believes in you and wants to help you Its hard in a rural town I dread having to travel for treatment but if it needs to be so be it
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.