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30 Things About My Life with Migraine and Chemical Sensitivity

This is a reader-submitted story.

1. My diagnosis is: migraine and osmophobia
2. My migraine attack frequency is: 25-28 days per month
3. I was diagnosed in: 2004
4. My comorbid conditions include: obsesity, depression, anxiety, agoraphobia, chemical sensitivity.
5. I take 6 medications/supplements each day for prevention and 3 medications/supplements to treat an acute attack
6. My first migraine attack was: too early to remember
7. My most disabling migraine symptoms are: pain, vertigo, dysphasia, visual changes, severe sensitivity to chemical (synthetic) fragrances and to VOC.
8. My strangest migraine symptoms are: reading thoughts and emotions in others
9. My biggest migraine triggers are: synthetic, chemically based fragrance found in many many personal care (think- other people) and cleaning products (think- anywhere but my own home), as well as laundry products (think dryer vents).
10. I know a migraine attack is coming on when: my vision is double, blurry or I see spots or glow-worms at the side of my peripheral vision, or I mix up words/can’t find word, or I get immediate piercing pain upon exposure to fragrance.
11. The most frustrating part about having a migraine attack is: trying to decide what to do, how to handle, when I am unable to think straight.
12. During a migraine attack, I worry most about: whether it is causing permanent brain damage.
13. When I think about migraine between attacks, I think: What does “between attacks” mean?
14. When I tell someone I have migraine, the response is usually: “Oh I get those too, did you try…..(fill in any medication, remedy, etc.)”
15. When someone tells me they have migraine, I think: I hope it’s only episodic and they are doing what they can to prevent it becoming chronic.
16. When I see commercials about migraine treatments, I think: Someone’s making a buck.
17. My best coping tools are: social media, family, spiritual practice, yoga.
18. I find comfort in: my garden, cats, grandson.
19. I get angry when people say: “It’s only a little (perfume)”, or “It’s all natural (fragrance)”. To me it doesn’t matter, I’m sensitive to very small amounts of chemicals.
20. I like it when people say: How can I become fragrance free so I can be your friend.
21. Something kind someone can do for me during a migraine attack is: bring me some soup, and/or clean the cat box.
22. The best thing(s) a doctor has ever said to me about migraine is: Haha, my neurologist once said that when I do yoga inversions it makes my brains “slosh around” in there (he was joking to try and cheer me up. I was upset because I’d just been triggered during my Iyengar yoga class for the first time in 11 years of practice.
23. The hardest thing to accept about having migraine is: I had to give up my career and I’m unable to date.
24. Migraine has taught me: That really all we have is our inner lives, and that inner life can strengthened through pain.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “The more difficult the conditions, the more productive the Work, as long as one remembers the Work.” This quote is an aphorism of G.I. Gurdjieff and is about the Sacred Work (on One’s Self) that he taught.
26. If I could go back to the early days of my diagnosis, I would tell myself: Take this very seriously and do everything you can to manage it to prevent it becoming chronic.
27. The people who support me most are: my Sister and my Daughter.
28. The thing I most wish people understood about migraine is: I have symptoms all the time (sensitive) even though I might look okay and I don’t always tell people how dizzy, pained, etc. I am.
29. Migraine and Headache Awareness Month is important to me because: there is always new information from the blogs, social media, and the conference.
30. One more thing I’d like to say about life with migraine is: Everyone who has migraine should take great care to eliminate synthetic chemical fragrance from their environment. The ingredient “fragrance” (read the label) is a potpourri of petrochemicals that are not disclosed to the consumer. many of them have been found to be NEUROTOXIC as well as carcinogenic and causes of ashthma attacks, COPD, dermatitis, etc.

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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Too Many Headaches

This is a reader-submitted story.

1. My diagnosis is:migraine
2. My migraine attack frequency is: right now 2- 3 migraines a week
3. I was diagnosed in:2001
4. My comorbid conditions include:depression
5. I take __2__ medications/supplements each day for prevention as well as Botox injections every 12 weeks and _1___ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 16 years old, I thought I had the flu because I was so sick
7. My most disabling migraine symptoms are: nausea and pain
8. My strangest migraine symptoms are:
9. My biggest migraine triggers are: STRESS, not eating, not sleeping
10. I know a migraine attack is coming on when: I get nauseated
11. The most frustrating part about having a migraine attack is: it is uncontrollable
12. During a migraine attack, I worry most about: how long will it last
13. When I think about migraine between attacks, I think: when is the next one coming I hope it doesn’t come on an important day
14. When I tell someone I have migraine, the response is usually: have you tried taking Excedrin that works for me.
15. When someone tells me they have migraine, I think: is it really a migraine or do they just have a bad headache and assume its a migraine.
16. When I see commercials about migraine treatments, I think: I have already tried that one, come up with something else.
17. My best coping tools are: try to maintain a consistent schedule, make sure I take my medications daily at the same time.
18. I find comfort in: my house
19. I get angry when people say: you have a headache again.
20. I like it when people say: migraines are terrible.
21. Something kind someone can do for me during a migraine attack is: make sure I have sprite or water to drink. Offer to drive me to the doctor if necessary.
22. The best thing(s) a doctor has ever said to me about migraine is: ???
23. The hardest thing to accept about having migraine is: that it could be disabling one day and the medication that works now may not always work.
24. Migraine has taught me: to enjoy the good days.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
26. If I could go back to the early days of my diagnosis, I would tell myself: ask more questions and demand better answers from doctors.
27. The people who support me most are: family
28. The thing I most wish people understood about migraine is: it is NOT just a headache and just because I may not actively have a head right now does not mean that I feel great. Also, sometimes choosing to do something that is a trigger means I am choosing to have a migraine.
29. Migraine and Headache Awareness Month is important to me because: people don’t understand that migraine is an invisible disease not just a headache.
30. One more thing I’d like to say about life with migraine is: I don’t want your pity just your understanding.

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 My Life with Chronic Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine (without aura)
2. My migraine attack frequency is: 30 per month
3. I was diagnosed in: About 35 years ago but not chronic until the last 20 years.
4. My comorbid conditions include: Gord. Otherwise very healthy.
5. I take __0__ medications/supplements each day for prevention and __1__ medications/supplements to treat an acute attack. Been there – done that – no preventative medication works for me – so I got off the merry-go-round and gave it all up as a bad joke!
6. My first migraine attack was: At around 18 years of age
7. My most disabling migraine symptoms are: Pain, extreme fatigue
8. My strangest migraine symptoms are: Frequent urination, I smell smoke, I see a flash of bright blue light in my peripheral vision (right side only).
9. My biggest migraine triggers are: Breathing, sleeping, laughing, crying, talking, working, resting, exercising, alcohol, stress – anything basically.
10. I know a migraine attack is coming on when: When I start to urinate frequently, when I feel extreme sleepiness (I can fall asleep sitting up) or when I feel irritated for no reason and sometimes simply when I feel pain.
11. The most frustrating part about having a migraine attack is: As most of my migraines develop in my sleep, by the time I wake they are full blown and more difficult to treat.
12. During a migraine attack, I worry most about: That my medication will work just one more time. I am so lucky that the triptans are an effective treatment for me in aborting an attack, except when I wake with a full blown attack.
13. When I think about migraine between attacks, I think: If only I could feel like this all the time – what a wonderful thing that would be. Being without pain gives me a high! Woohoo – no pain!
14. When I tell someone I have migraine, the response is usually: Kindness and empathy from strangers – compassion fatigue from family and friends.
15. When someone tells me they have migraine, I think: Oh, I hear you and I get it!
16. When I see commercials about migraine treatments, I think: I am hopeful there may be something new on the market that could help me.
17. My best coping tools are: Learning acceptance that my brain is broken and that the condition is permanent. Also I have cast aside feelings of anger and frustration as they are unhelpful and counter-productive and make me sound like a cranky cow sometimes.
18. I find comfort in: My own home and my own bed.
19. I get angry when people say: “What did you do to cause that attack?” or “Oh, do you still get those headaches. I thought you were better”. Really?
20. I like it when people say: “How on earth do you manage to work full time with that many migraines?” Sometimes I have no idea myself.
21. Something kind someone can do for me during a migraine attack is: Maybe if someone said, “It’s ok – I’ve got that. You just sit and rest a while.”
22. The best thing(s) a doctor has ever said to me about migraine is: I hear you.
23. The hardest thing to accept about having migraine is: I am stuck with this hideous condition. It has affected my work, my marriage, my friendships and my life. I fear it has changed the person I could have been, not necessarily for the better.
24. Migraine has taught me: I am stronger than 10 men.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Even though it hurts like hell – it can’t hurt me.
26. If I could go back to the early days of my diagnosis, I would tell myself: Nothing – If I knew what I was headed for – I would have been absolutely terrified.
27. The people who support me most are: That’s a hard one. My husband of course but a pain clinic told me to request family and friends to stop asking me about the pain so I am not constantly reminded about it, so no one asks and I don’t share the condition with many people. I am not sure about this advice as it is very isolating.
28. The thing I most wish people understood about migraine is: It is not just a headache but a neurological condition that affects your whole body, work, life and those connected to you.
29. Migraine and Headache Awareness Month is important to me because: It keeps the issue in the minds of those who can make a difference with treatments.
30. One more thing I’d like to say about life with migraine is: I won’t sugarcoat it – I hate this condition as it has caused me to live a life with less joy, happiness, travel, social interactions and fun that I had hoped I would be experiencing. However, I understand that I am broken but I am tougher than I ever imagined I could be.

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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Life with Migraine

This is a reader-submitted story.

1. My diagnosis is: classic migraine
2. My migraine attack frequency is: 2-15 a month
3. I was diagnosed in: 1987 by a Neurogist
4. My comorbid conditions include:
5. I take ___6_ medications/supplements each day for prevention and ___1_ medications/supplements to treat an acute attack
6. My first migraine attack was: I was 5 years old.
7. My most disabling migraine symptoms are: weakness, nausea, fatigue, sensitivity to light, sound and odors.
8. My strangest migraine symptoms are: yawning
9. My biggest migraine triggers are: barometric pressure changes, the full moon
10. I know a migraine attack is coming on when: I feel crabby and sleepy and thirsty
11. The most frustrating part about having a migraine attack is: having to deal with it
12. During a migraine attack, I worry most about: falling down
13. When I think about migraine between attacks, I think: god, these migraines are awful! I wouldn’t wish them on anyone.
14. When I tell someone I have migraine, the response is usually: I’m sorry.
15. When someone tells me they have migraine, I think: how can I help?
16. When I see commercials about migraine treatments, I think: how much does that cost?
17. My best coping tools are: deep breathing, drinking water and keeping my feet warm and my dad cool.
18. I find comfort in: silence and stillness and darkness.
19. I get angry when people say: take a Tylenol.
20. I like it when people say: how can I help?
21. Something kind someone can do for me during a migraine attack is: be quiet.
22. The best thing(s) a doctor has ever said to me about migraine is: I know it is hard.
23. The hardest thing to accept about having migraine is: there is no cure.
24. Migraine has taught me: to be flexible and adaptable. to listen to my body.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: breathe
26. If I could go back to the early days of my diagnosis, I would tell myself: wear socks when you’re sick .
27. The people who support me most are: my family and close friends.
28. The thing I most wish people understood about migraine is: how debilitating migraine is.
29. Migraine and Headache Awareness Month is important to me because: it is a disease not ” just a headache”.
30. One more thing I’d like to say about life with migraine is: Be strong and keep searching for the answers that help you!

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 Meme

This is a reader-submitted story.

1. My diagnosis is: Chronic headaches

2. My migraine attack frequency is: Variable. It can be constant for weeks on end and then I can be free of headaches for a few days. I can also wake up with a headaches and abort it with a triptan within a few hours.

3. I was diagnosed in: 30 years ago at age 9. 1985

4. My comorbid conditions include: Depression and fatigue. I am a nurse and have had rotator cuff surgery and three back injections for herniated discs but not sure if that is considered ‘comorbid’. I’ve also had endometrial cancer.

5. I take topromax 75 mg twice daily for as long as I can remember and 1 Gram of Magnesium daily as well as a B-Complex vitamin. I try to eat mostly natural foods without preservatives. I have Botox injections every 8 weeks that I’m not sure if they really do help but can’t hurt. I take Imitrex injections and Relpax pills for ‘attacks’. If my migraines are acute and last more than 2 weeks, I usually end up taking a double pack of methylprednisone which usually helps.

6. My first migraine attack was: I was in third grade but I can’t remember that.

7. My most disabling migraine symptoms are: Extreme pain. Inability to process my thinking. Unable to speak or open my eyes. Unable to touch my head or face.

8. My strangest migraine symptoms are: On some occasions I have become confused, thinking that my children were kidnapped or that I had died and was unable to ‘cross over’.

9. My biggest migraine triggers are: Definitely weather changes. Irregular eating patterns, lack of sleep. alcohol.
10. I know a migraine attack is coming on when: visual changes. head is sore on top, Feeling of doom

11. The most frustrating part about having a migraine attack is: Not being able to make future plans. Letting people down.

12. During a migraine attack, I worry most about: Letting my family down

13. When I think about migraine between attacks, I think: When am I going to get hit again? I need to remember my medicine.

14. When I tell someone I have migraine, the response is usually: “Oh I get headaches to!!”

15. When someone tells me they have migraine, I think: “Yeah, really. I’ve heard that before.”

16. When I see commercials about migraine treatments, I think: “Why can’t there be a cure for migraines?” I feel frustrated and pestimistic unfortunately at this point in my life because I have tried so many different things and nothing seems to help.

17. My best coping tools are: my best friend who seems intuitive to me.

18. I find comfort in: I have learned that having migraines is simply a part of my life and something that I need to just live with. I can’t change it. I have people in my life that accept me for who I am and know that I do the best I can and cope as best I can and they understand when I can’t do certain things.

19. I get angry when people say: “Oh, I get headaches too!” “Why don’t you try…..” Maybe you should see a doctor for those.” And I don’t get angry, simply frustrated. They just don’t understand because they can’t relate.

20. I like it when people say: “That must be hard for you.” And they let it go without acting all sympathtic.

21. Something kind someone can do for me during a migraine attack is: Ask if I need anything. Get me an ice pack. Sometimes I would like to have my back gently rubbed.

22. The best thing(s) a doctor has ever said to me about migraine is: “We are going to work together to get this under control for you.”

23. The hardest thing to accept about having migraine is: There is no cure. I have to live with this and so does my family.

24. Migraine has taught me: That I can’t plan ahead and that the days that I feel good, I feel great!! I stay calm and try not to have any mood swings. I let things roll off me easier.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: “I can’t control this. God. I am in your hands now.” Daily I know that I have to push through many times. I have realized that a ‘can do’ attitude works better for me than a ‘can’t do’ attitude. It drives some of my friends and family nutty because they don’t understand why I ‘overdo’ but if I always waited for a completely good day, I wouldn’t get anything done and would feel more depressed about myself.

26. If I could go back to the early days of my diagnosis, I would tell myself: To enjoy my good days more. My days with migraines are becoming worse and worse as I grow older.

27. The people who support me most are: my best friend, my mother and my gentleman friend. My children do the best they can but as teenagers, they have to be places and need help with homework as all teenagers do. But they are wonderful in making meals, cleaning and caregiving.

28. The thing I most wish people understood about migraine is: how absolutely debilitating it really is. I can live with any other pain but migraine pain makes me unfunctional.

29. Migraine and Headache Awareness Month is important to me because: It helps people with migraines come together in support of each other so we don’t feel so alone and help each other understand that there is more out there to help ourselves.

30. One more thing I’d like to say about life with migraine is: The biggest trick to having success in life with migraines is having a strong support system and good attitude. People that love you and care about you and support you will help you survive this horrible disease—and it is a disease, no matter how you see it.

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.