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30 Things About Your Life With Migraine (even in Australia)

This is a reader-submitted story.

1. My diagnosis is now: Status Migraine. It has changed over the years: Chronic Migraine, cluster headaches, and recently vestibular migraines.
2. My migraine attack frequency is: approximately 13 – 20 day’s per month. The severity and symptoms often vary with each attack.
3. I was diagnosed in: 1992
4. My comorbid conditions include: hypothyroid, depression, chronic fatigue syndrome, chemical sensitivities, Wilsons temperature syndrome, Pyrrole disorder, I think that’s enough – don’t you!!!!
5. I take a ridiculous number of supplements each day for prevention and a Naramig (2.5 mgs) along with a ibuprofen (400 mgs) medication to treat an acute attack.
6. My first migraine attack was: in 1992 after eating a Kit Kat Chocolate Bar for morning coffee break. Man on man. I had to leave work and threw up on the ferry going home. I almost fell overboard – a nice old man caught me. Luckily I was about 32 years old with a short skirt on.
7. My most disabling migraine symptoms are: my eyes feel like they are crushing and I get blurry vision, extreme fatigue, the dizziness and nausea. The forgetfulness and just finding words make me feel really simple and the pain. Oh yes – the pain is number one complaint! 200 out of 10!
8. My strangest migraine symptoms are: all the cognitive impairment, trouble speaking and comprehending and then I think would be the olfactory hallucinations. I smell smoke even when there is none.
9. My biggest migraine triggers are: (it feels like everything some days) Perfume, smoke and incense. Smells set me off – on new things – that plastic smell, or the smell in new clothes (I have read that new clothes from China are sprayed with formaldehyde to keep the wrinkles out – but not sure that’s true). I have to wash everything at least 3 times to get the new smell out, and degas new things that are plastic. Chocolate – any kind baked or raw. Sugar. Too much salt.
10. I know a migraine attack is coming on when: my eyes feel like they are being crushed and the back of my neck gets stiff and sore. Sometimes I just get a funny taste in my mouth, this happens with perfume. For some strange reason women wear LOADS of perfume here in Australia.
11. The most frustrating part about having a migraine attack is: having an attack … I would answer that I can not accurately predict it or control it. And that over 20 years I have no yet found a solution to stop them or reduce their occurrence in anyway. If the question said having migraine attacks – I would answer that I have had to lose everything just to survive. Job, friends, moved house. Everything is so different now. If I think too much about it, it’s very sad. Hence the depression.
12. During a migraine attack, I worry most about: dying.
13. When I think about migraine between attacks, I think: I think I live in denial – I just keep thinking – it will get easier and they will go away.
14. When I tell someone I have migraine, the response is usually: “Piker” here in Australia they think you are just trying to get out of doing something you don’t want to do. And then comes “Oh! I had those … I just stopped (insert doing x) drinking coffee, divorced husband, eating chocolate and they stopped.” Or, “I had one once” … more often than not I just get glassy vague looks. Like I have said a foreign word.
15. When someone tells me they have migraine, I think: I want to hear the whole story, and then I won’t feel so alone. But that rarely happens. I rarely meet anyone with migraine. But then I don’t go out much.
16. When I see commercials about migraine treatments, I think: They’ve got NO idea!
17. My best coping tools are: ice packs and Naramig. And Counseling. I’ve become a counsellor myself.
18. I find comfort in: finally finding a medication that works effectively.
19. I get angry when people say: You have the luxury of being sick.
20. I like it when people say: (one nurse said to me a few years ago, who had just come through breast cancer) she’d rather have breast cancer and get over it in 18 months than have migraines forever.
21. Something kind someone can do for me during a migraine attack is: replenish ice packs and hot water bottles.
22. The best thing(s) a doctor has ever said to me about migraine is: there are loads of medications to try now, lets not give up til we find what works.
23. The hardest thing to accept about having migraine is: that this is a forever disease. Forever and with no cure.
24. Migraine has taught me: that people can be cruel, any not many understand this level of pain. They taught me to never give up, and to wait for it to pass no matter how many days it takes. Pain free days are coming. Patience. Perseverance. Resilience strategies.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: It’s time to rest, rest and this will pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: This is real, you need to prepare. You need a management strategy, you need a support system. You are not crazy. You can do this. I will be there for myself, in all the dark times, I will be there.
27. The people who support me most are: My husband and my psychologist.
28. The thing I most wish people understood about migraine is: they are not headaches. Different drugs, different bodily reactions. They are debilitating to us sufferers. They destroy lives.
29. Migraine and Headache Awareness Month is important to me because: it educates people on this disease. There is power in numbers.
30. One more thing I’d like to say about life with migraine is: difficult and is a life time challenge so make sure you set up life time strategies to cope and survive.

This was writteb by Holly from Migraine Savvy.

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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30 Things About Your Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic migraines with aura, Vestibular migraines, Menstrual migraines, Persistent migraine auras.
2. My migraine attack frequency is: Daily
3. I was diagnosed in: 1997
4. My comorbid conditions include: Fibromyalgia, Hypothyroidism, Asthma, Hypomobility syndrome, peripheral neuropathy
5. I take __5__ medications/supplements each day for prevention and __3__ medications/supplements to treat an acute attack
6. My first migraine attack was: When I was 20
7. My most disabling migraine symptoms are: Vertigo since it does not go away.
8. My strangest migraine symptoms are: Persistent migraine auras, since there are a lot of bizzare visual weirdness going on.
9. My biggest migraine triggers are: Lack of sleep, too much sleep, hormones, sunlight, weather
10. I know a migraine attack is coming on when: From the aura.
11. The most frustrating part about having a migraine attack is: The decrease in capacity to function.
12. During a migraine attack, I worry most about: Trying to function at work, driving
13. When I think about migraine between attacks, I think: There is only a small gap to live in and even between attacks migraines affect the brain. Photophobia is a good example of that. Vertigo is another.
14. When I tell someone I have migraine, the response is usually: Oooh sounds like a really bad headache.
15. When someone tells me they have migraine, I think: I feel for you. I really, really feel for you.
16. When I see commercials about migraine treatments, I think: I mock them and laugh
17. My best coping tools are: Meditation, ice, relaxation breathing, distraction
18. I find comfort in: hobbies like blogging, writing and reading.
19. I get angry when people say: Migraines are not a disability.
20. I like it when people say: They don’t understand how I could function with such pain, because they grasp the problem.
21. Something kind someone can do for me during a migraine attack is: Be quiet, get me my ice and migraine balm, keep it dark and give me some time to relax.
22. The best thing(s) a doctor has ever said to me about migraine is: Is that even the best preventative would never bring me down beneath chronic at this point, so we needed to add in lifestyle changes. At least he was honest.
23. The hardest thing to accept about having migraine is: The effect on my life, my career and my future.
24. Migraine has taught me: To compromise, to accept my limits, to live in moderation.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass. I repeat that when in severe pain… because That severe painful episode will pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: To get treatment early. That things can get very complex.
27. The people who support me most are: My mom and my spouse.
28. The thing I most wish people understood about migraine is: How complex treatment is. How difficult it is to handle this pain long term.
29. Migraine and Headache Awareness Month is important to me because: To help raise awareness about the affect this has on lives.
30. One more thing I’d like to say about life with migraine is: That it is difficult to have a life with chronic migraines. It is living in the pain gaps, when you have them. It is a life by inches.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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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37 years and counting

This is a reader-submitted story.

1. My diagnosis is: chronic migraine and vestibular migraines
2. My migraine attack frequency is: five out of seven days p/week
3. I was diagnosed in: 1979
4. My comorbid conditions include: depression, vestibular migraines
5. I take __3__ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 14 – at the Miami airport flying to St Thomas… so sick on the plane and for 3 days… my mom/dad didn’t know what was wrong… we had a business meeting to attend with my Dad… they thought I was being rude and made excuses for my behavior. They soon realized something was very wrong
7. My most disabling migraine symptoms are: PAIN…numbness on right side… aphasia… inability to write clearly or spell common words
8. My strangest migraine symptoms are: food cravings and hungry while nauseated
9. My biggest migraine triggers are: smells, light, certain foods, smell of cooking bacon or ham
10. I know a migraine attack is coming on when: I smell smoke (my aura) or feel it “knocking” above my eye… just there, not really setting in
11. The most frustrating part about having a migraine attack is: They happen so often… can’t commit to anything (work and social) because I can’t schedule it. Loosing my ability to work (career)… I changed careers so I could “skip” work if needed every couple of weeks – but it didn’t work – my migraines go on for days…
12. During a migraine attack, I worry most about: It won’t end
13. When I think about migraine between attacks, I think: Thank god, a pain free day (happy)… when will it start again (fearful)
14. When I tell someone I have migraine, the response is usually: Oh, my (fill in the blank) has that…. or my sister who wants to compare my disease with her MS – and she thinks MS is more debilitating.
15. When someone tells me they have migraine, I think: Wow – how often? If not chronic – I get jealous. Or, they’ve confused a migraine with a more typical headache.
16. When I see commercials about migraine treatments, I think: FOOLS
17. My best coping tools are: sense of humor, cold packs and eye masks, being kind to myself (i.e., spa day with facials, healing water baths)
18. I find comfort in: mac and cheese; chocolate (not my triggers). My cat who snuggles with me.
19. I get angry when people say: I wish I could do something for you, then lists all the ways they can’t help. Offer advice or provide me with research articles thinking I haven’t already done this in the past 37 years.
20. I like it when people say: let me go to the store for you – what do you need?
21. Something kind someone can do for me during a migraine attack is: allow me to feel the pain and isolate myself in a dark quiet room
22. The best thing(s) a doctor has ever said to me about migraine is: I don’t think you have typical migraines – let’s run some tests… discovered I have sleep apnea, a PFO in my heart (just had surgery), and SCD – a rare condition that contributes to vestibular migraines and explains my balance problems.
23. The hardest thing to accept about having migraine is: I will always have this disease and it has cost me friendships, relationships, and my career…. I had surgery for the PFO 12 days ago with three debilitating migraines since then….. and some smaller headaches too. One day a silent migraine.
24. Migraine has taught me: patience.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: this too shall pass…. don’t ask “why me, but why not me?” – meaning everyone else has something (cancer, heart disease, bad marriages, etc.)
26. If I could go back to the early days of my diagnosis, I would tell myself: give yourself a break – accept this condition and learn ways to live with it
27. The people who support me most are: members of my family (two siblings of five are outstanding) and my parents (when they were alive). My good friends are next.
28. The thing I most wish people understood about migraine is: This is an ongoing disease and not something I use to “get out of my commitments” and that I don’t have coping skills for stress – I do. My migraines are not stress induced (for the most part) and that I have great food restrictions.
29. Migraine and Headache Awareness Month is important to me because: it gave me the ability to post on facebook some facts
30. One more thing I’d like to say about life with migraine is: If one doctor says “there is nothing more I can do” don’t give up or get discouraged… research and find new docs who specialize in migraines

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.