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30 Things About My Life with a Complicated and Intractable Migraine

This is a reader-submitted story.

1. My diagnosis is:
Complicated Migraines, and an Intractable Migraine

2. My migraine attack frequency is:
Frequency and duration is it’s non-stop, one hundred percent of the time. The level varies by hour or day(s).

3. I was diagnosed in:
In 1997, I was diagnosed with Migraines and given my first rescue perscription. In 2001, I was diagnosed with Chronic Migraines and given both preventative and rescue perscriptions. In 2002, I was diagnosed with Complicated Migraines, an Intractable Migraine, and Severe Food and Environmental Allergies to everything I was tested for. In 2004 and 2005, I was diagnosed with multiple TIAs due to allergic reactions to triptans.

4. My comorbid conditions include:
Severe Cognitive Disfunction, four Severe TIAs, as well as seven other TIAs.

5. I take 3 rescue and 1 anti-nausea medications per day, along with using a Cephaly. I have an ongoing regimine of Botox injections, double rhizotomies, and nerve blocks per year. I have also tried steroids, a capsaicin trial, and have used an endless list of rescue and preventative compounded medications.

6. My first migraine attack was:
Unsure. I began having severe enough headaches at the age of 12 to where I would have to lay down. By the time I was in my early 20s, I was laying down frequently and taking a lot of OTC meds, often switching between Tylenol and Excedrin due to their ineffectiveness.

7. My most disabling migraine symptoms are:
Head pain, nausea, vomiting, weakness, fatigue, numbness, tingling, limbs going cold, light/scent/sound sensitivity, cognitive disfunction, loss of vocabulary, memory loss, forgetfulness, vertigo, loss of appetite.

8. My strangest migraine symptoms are:
Craving salt, craving sugar, inability to hold a thought or conversation, inability to comprehend, uncontrollable falling/jerking/diving, inability to speak, constant leg moving or kicking, limbs going cold, eye pressure and loss of vision.

9. My biggest migraine triggers are:
Food (65 identified foods/dirivitives), Propaphal, medication fillers, every single OTC med and vitamin, weather, scents (candles, perfumes, pestisides, fertilizer, cigarettes or cigars), light (sun, fluorescent, flashlights, eye doctor tests), sudden movement (jerking, sneezing or coughing), sudden temperature changes, exercise, moisturizers, cosmetics, hair care products, dyes.

10. I know a migraine attack is coming on when:
I always have a migraine, but I know when I trigger higher if I inexplanably jerk and lose my balance, become nauseated, my limbs go cold, or my face feels numb.

11. The most frustrating part about having a migraine attack is:
Having to cancel events that we’ve planned and very much looked forward to, having to eat the cost of tickets. Being helpless.

12. During a migraine attack, I worry most about:
How many continuous days will I be bed bound, my husband, will I have a stroke, will I have an anneurysm caused by my two identified “areas” rupturing, when is my next PM appointment, will I get too sick to make it to the ER?

13. When I think about migraine between attacks, I think:
Wow! I’m well enough to make a meal or do a load of laundry… How much time do I have?!!

14. When I tell someone I have migraine, the response is usually:
You should try xx; it really helps my “aunt”.

15. When someone tells me they have migraine, I think:
Oh Lord! I’m so sorry… How bad is theirs?

16. When I see commercials about migraine treatments, I think:
A) That’s money-making garbage… 🙁
B) Yuck! :O I’m so allergic to that!
C) I was one of the original guinea pigs for that before it was FDA approved.

17. My best coping tools are:
My understanding and accommodating husband, laying down, silence, the hope it may be better next week.

18. I find comfort in:
My husband, God’s promises, my PM isn’t going to abandon me.

19. I get angry when people say:
“You should try ‘this’.” Ugh… (Thoughts: Yes, yes… I’ve tried “that” numerous times, and the side-effects and level 10+ migraine is memorable).
“Excedrin Migraine…” (Thoughts: I’m a little beyond that. The fillers alone in that junk med would put me in the hospital).
“I know a great doctor.” (Thought: So do I, in fact, I’ve been treated by that great doctor and after time, he/she told me there was nothing more they could do for me).
What I’d really like to do is inhale and roll my eyes! 😉

20. I like it when people say:
I’m so sorry… I know how dibilitating that can be. I’ll be praying for you.

21. Something kind someone can do for me during a migraine attack is:
Sitting quietly with me, getting and handing me my meds, keeping track of when I can take my next dose, keeping track of my max amount of meds per day, offering me ice packs because I forget how much they’ve begun to help, preparing a simple single ingredient food for me, bringing me water, leaving me alone but checking up on me frequently, letting me sleep, not expecting me to engage in conversation, letting me ramble on when I get one of those weird migraines, being patient when you need to ask me something, understanding that I’m helpless.

22. The best thing(s) a doctor has ever said to me about migraine is:
Educating me about a severe, ongoing elimination diet.

23. The hardest thing to accept about having migraine is:
I don’t have a productive life, I may never have my career back.

24. Migraine has taught me:
How fleeting life is, just how quickly years pass, get as much done/accomplished in a good hour/afternoon as I can, and how lovely life is outside the house.

25. The quotation, motto, mantra, or scripture that gets me through an attack is:
Revelations’ all tears shall be wiped away.

26. If I could go back to the early days of my diagnosis, I would tell myself:
Take more weekend trips, make as many memories as you can!

27. The people who support me most are:
My husband, my daughter, my Pain Management Doctor and his PA.

28. The thing I most wish people understood about migraine is:
A migraine is NOT a bad headache. They’re not even in the same realm.

As a long-term migraineur, I LIE A LOT, partially for your benefit, and because I don’t want to be judged, abandoned, or offered advise by others.

Realize, on my very, very best hours/days, I still have a migraine. I’m always faking how well I’m feeling/doing because I realize I’m a burden and just want to have a level of normalcy. When I’m out with you and get quiet, I’m pushing and struggling hard so we can just do something fun.

During my worst weeks/months/seasons, just love me and help me. Realize, I’m just not myself, emotionally or physically.

29. Migraine and Headache Awareness Month is important to me because:
Unless you have experienced a migraine, you couldn’t possibly understand all of the complex neurological side effects that go along with it.

30. One more thing I’d like to say about life with migraine is:
When a planned event has to be canceled because I’m too sick, realize I am so disappointed that it’s happened AGAIN, that I am sorrowful that it’s impacting your life, as well. I can get depressed, am saddened and know your quality of life is driven by mine. I beat myself up over that.

Besides going to doctor appointments, if the only time we get out each month, please let it be to go to church. I need it to continue what has become my unfulfilled and painful life.

When I talk about life after migraines, let me ramble on with all my hopes, goals and dreams. When I am able to think while bedridden, in pain and sick, these are the things I think about doing with you, family and loved ones.

Much love and eternal gratefulness to my yummy hubby. <3

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.

3 Responses to 30 Things About My Life with a Complicated and Intractable Migraine

  1. Mary says:

    Wow, I just read my story except for not the drug trials but still feel like the guinea pig of let’s try this. My biggest complaint I can not even go to a local ER. The ER will only try the give a shot of imitrex even when you tell them it doesn’t work or take your last clinic record with you.

    Praying for You!

    Fellow chronic migrainee, intractable, status migrainus

  2. Margie says:

    This is my life exactly. I actually cried when I read this and it was a comfort to realize that their is someone who has this and understands. God bless you for writing this and going to show my family as I also feel like they just don’t get it but they do realize something is wrong with me. I cannot tell you how many times I have to cancel or avoid certain situations and how bad I feel when it happens. I also have a noise in my head all the time. Sometimes louder if migrain is getting worse especially during a barometer change. Thank you for writing this. Margie

  3. Margie says:

    God bless you for writing this as this is my life everyday. I actually cried when I read this but also felt relief knowing there is someone out there who understands our daily struggle and it’s real. The daily regimen of weather changes and deciding if I can participate in any event is real and makes me sad that I cannot go. The realization that someone has this and it’s real is a comfort for me and that I’m not alone in the struggle. Thank you for writing this. Margie

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