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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.

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

  1. Sally says:

    Look into the use of LSD at very low doses for treatment of migraines/cluster headaches. Worth a try if nothing else seems to be working and there are minimal if not no long lasting side effects at all

    • Sally, I know it’s (relatively) popular for cluster headache, but haven’t heard much about its use for migraine. Do you have any information you can share?

      Take care,
      Kerrie

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