awareness Archives - Page 5 of 8

30 Things About Migraines

June 3, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: Chronic migraine
2. My migraine attack frequency is: Lately, almost daily. Varies with the weather, stress, sleep deprivation
3. I was diagnosed in: 2004
4. My comorbid conditions include: REM Behavior Disorder, Type II Diabetes, high blood pressure
5. I take various medications/supplements each day for prevention and various medications/supplements to treat an acute attack. Addiction runs heavily in my gene pool, so I avoid opioids as much as possible. When I have aura preceding the pain, I’ll take four 200 mg ibuprofen and two acetaminophen at the beginning of the aura. Then ice packs — or heat — and my bed are the best treatments.
6. My first migraine attack was: When I was a teenager.
7. My most disabling migraine symptoms are: Brain fog. It is so frustrating to lose IQ points!!!
8. My strangest migraine symptoms are: Aphasia.
9. My biggest migraine triggers are: Fluorescent lights, strobe lights (as in ambulance, police car flashing lights), missing meals and sleep deprivation.
10. I know a migraine attack is coming on when: I see the aura. However, I often will wake up in the morning with a migraine, no aura.
11. The most frustrating part about having a migraine attack is: It disrupts my life in a major way. I have missed weddings, funerals and many, many other social occasions because of migraine. I have also missed activities and commitments that would help me stay emotionally and spiritually strong, better able to cope with this chronic illness.
12. During a migraine attack, I worry most about: If I don’t work, how to we pay the bills?
13. When I think about migraine between attacks, I think: Have to get as much done as possible before another one bowls me over.
14. When I tell someone I have migraine, the response is usually: Oh, my friend had that and they did this, and now they’re cured.
15. When someone tells me they have migraine, I think: I don’t have to explain myself.
16. When I see commercials about migraine treatments, I think: Been there, tried that, bought the t-shirt, burned it.
17. My best coping tools are: Prayer and knowing that my husband understands.
18. I find comfort in: A cool, quiet room, with a TV turned down low. An ice pack wrapped around my head and/or neck. Sometimes, instead of an ice pack, a home-made “rice bag” that I heat in the microwave. My pajamas.
19. I get angry when people say: I try not to get too angry, because I think most people are well-meaning. It does get under my skin when people imply that I’m just simply not trying hard enough.
20. I like it when people say: We miss you and know you want to be with us.
21. Something kind someone can do for me during a migraine attack is: Express their belief that I’m doing the best I can.
22. The best thing(s) a doctor has ever said to me about migraine is: Honestly, I can’t really think of any honest answer to this one. One neuro — early, early on — told me that most patients discover answers on their own, without a doctor’s help. All righty, then.
23. The hardest thing to accept about having migraine is: It blindsides me, throws me down and kicks me and I am almost powerless against it.
24. Migraine has taught me: Who my real friends are.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: It’s temporary.
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t get so excited about the next new “cure” or treatment. This is a process, and it may well be a very long one.
27. The people who support me most are: Beloved by me more than they’ll ever know.
28. The thing I most wish people understood about migraine is: It’s not just a headache. I was watching TV with my husband about a week ago, and some idiot on a show was hung over. I’ve only been hung over one time, but I told my husband, “That’s it! That’s it! It’s not just the pain, it’s like the worst hangover ever!!” Even though he has always been supportive and kind, it wasn’t until this analogy that he GOT it!
29. Migraine and Headache Awareness Month is important to me because: Knowledge is power.
30. One more thing I’d like to say about life with migraine is: I’ve had several major surgeries over the years — I’m 55 years old — and I would gladly go through all of them again to get rid of a year of migraines.

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.

30 Things Meme

30 Things about migraine and me

June 3, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: Migraine w/aura
2. My migraine attack frequency is: 10-12 per month
3. I was diagnosed in: 1988 (age 16)
4. My comorbid conditions include: anxiety, depression
5. I take _2_ medications/supplements each day for prevention and _3_ medications/supplements to treat an acute attack
6. My first migraine attack was: two weeks long!
7. My most disabling migraine symptoms are: light sensitivity, nausea, dizziness, aphasia, throbbing headache
8. My strangest migraine symptoms are: sense of disassociation with self/reality, perception that left arm is growing longer than normal (AiWS)
9. My biggest migraine triggers are: lack of sleep, weather, bright light, bright colors – particularly hot pink
10. I know a migraine attack is coming on when: I have aphasia, am dizzy, or have a “premonition” that an attack is emminent
11. The most frustrating part about having a migraine attack is: inability to communicate effectively – affects my job duties
12. During a migraine attack, I worry most about: how long it will inhibit my abilities
13. When I think about migraine between attacks, I think: I need to research and educate myself as much as possible to be prepared for the next attack
14. When I tell someone I have migraine, the response is usually: concern, and sometimes interest in symptoms, diagnosis, etc.
15. When someone tells me they have migraine, I think: I want to share my knowledge and resources to help them as much as I can
16. When I see commercials about migraine treatments, I think: I don’t typically see commercials about migraine treatment
17. My best coping tools are: rest and scaling back/or eliminating activities & triggers
18. I find comfort in: having my thoughts, feelings and symptoms validated
19. I get angry when people say: You have another headache again?? Did you take something?
20. I like it when people say: I’m sorry for your pain. Is there anything I can do for you?
21. Something kind someone can do for me during a migraine attack is:
22. The best thing(s) a doctor has ever said to me about migraine is: 1. We still have a lot of options to try for preventatives. 2. There’s two clinical trial openings that you might qualify for.
23. The hardest thing to accept about having migraine is: it’s a life-long diagnosis
24. Migraine has taught me: to be more aware of my body’s clues that something is wrong
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too, shall pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: Find a good neurologist to manage this condition
27. The people who support me most are: husband, parents, friends who are also migraneurs
28. The thing I most wish people understood about migraine is: It’s NOT just a headache!!!
29. Migraine and Headache Awareness Month is important to me because: It’s a great opportunity to spread the word about what migraine truly is.
30. One more thing I’d like to say about life with migraine is: Learn all you can about this disorder, but don’t let it control your life!

30 Things Meme

June 3, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine with Chronic Daily Headache
2. My migraine attack frequency is: 20-25 days per month
3. I was diagnosed in: 1993
4. My comorbid conditions include: Hypothyroidism, Reactive Hypoglycemia, Tachycardia
5. I take Magnesium & Propranolol each day for prevention and Zomig & Motrin to treat an acute attack.
6. My first migraine attack was: when I was 11
7. My most disabling migraine symptoms are: Inability to think clearly, severe head, neck, and facial pain, excessive anxiety.
8. My strangest migraine symptoms are: left eye burning, shaking
9. My biggest migraine triggers are: hormonal, barometric pressure changes, strong smells, altered sleep patterns, MSG, and dieting.
10. I know a migraine attack is coming on when: I get that “off” feeling and can’t think straight.
11. The most frustrating part about having a migraine attack is: the inability to concentrate 12. During a migraine attack, I worry most about: how long it will last and if I’ll be able to continue doing what needs to be done
13. When I think about migraine between attacks, I think: don’t get too relaxed – another is on its way soon.
14. When I tell someone I have migraine, the response is usually: again????
15. When someone tells me they have migraine, I think: I understand
16. When I see commercials about migraine treatments, I think: I sure wish that worked for me
17. My best coping tools are: my meds
18. I find comfort in: snuggling in my cozy chair with my dog
19. I get angry when people say: “Why doesn’t she just stay home.” 20. I like it when people say: don’t worry – we understand
21. Something kind someone can do for me during a migraine attack is: be patient
22. The best thing(s) a doctor has ever said to me about migraine is: maybe I can help
23. The hardest thing to accept about having migraine is: the poor quality of life and choice limitations
24. Migraine has taught me: that we don’t always see another’s pain
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Just keep swimming, swimming, swimming………..
26. If I could go back to the early days of my diagnosis, I would tell myself: Enjoy life now, because bad things are about to happen. You don’t think it could get worse, but it gets much worse.
27. The people who support me most are: my husband and my son
28. The thing I most wish people understood about migraine is: It is not a choice
29. Migraine and Headache Awareness Month is important to me because: I’m not alone
30. One more thing I’d like to say about life with migraine is: I don’t get migraines to inconvenience you.

30 Things Meme

My life with Migraine

June 1, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is:
Migraine

2. My migraine attack frequency is:
approximately 2-10 days per month

3. I was diagnosed in:
I can’t remember. I’ve had migraines since my mid teens and have been officially diagnosed for at least ten years.

4. My comorbid conditions include:
depression, anxiety, fatigue

5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack
I am not currently taking any preventative medication or supplements for prevention although I have tried many in the past. All the preventative medication’s side effects were too debilitating for the current frequency of my migraines. I have not had much success with supplements but I still give new things a try occasionally when I read about them.

6. My first migraine attack was:
The first one I remember was at 16 but I suspect there were earlier instances since I was considered a “sickly” kid and was in bed fairly frequently with sort of mysterious symptoms.

7. My most disabling migraine symptoms are:
pain in the eye socket and back of the neck, nausea, dizziness, mild aphasia, trouble thinking clearly, extreme sensitivity to light, noise and smells

8. My strangest migraine symptoms are:
extremely pale with dark circles under my eyes with one eye drooping half closed. Trouble thinking of and selected the right words. shaking, dizziness, frequent urination, desire to eat salty foods – boiled egg whites, Lay’s potato chips and a coke are my go to post migraine meal.

9. My biggest migraine triggers are:
menstrual cycle, weather changes, sleep disruptions, stress, bright or flashing lights, exertion, smoke or fragrances, foods – caffeine, alcohol, artificial sweeteners, yogurt, oranges, legumes, processed meats or foods like top ramen

10. I know a migraine attack is coming on when:
lights seem too bright, trouble finding the right word, stuffy nose, stiff neck, a buzzy “migrainey” feeling that is hard to describe, inexplicable grouchy/snappiness or exceptionally emotional feeling for no reason

11. The most frustrating part about having a migraine attack is:
not knowing how long it will last, worrying about whether the drugs will work, worry about missing work, guilt for not being able to whatever was planned that day, guilt that I’m not being a good wife, friend, etc., shame that I somehow didn’t manage things well and caused the attach to happen.

12. During a migraine attack, I worry most about:
Being fired from my job, extreme worry that my increasing number of migraines, and their increasing duration, means I may develop chronic daily headache.

13. When I think about migraine between attacks, I think:
I try to think very positive between attacks so I think about my migraine management techniques working. For the past few years I’ve been thinking about the hope that menopause will decrease my migraines and my day to day life won’t be so impacted. I think about being a better wife during the pain free days to make up for the days when I am in pain and not as tuned in or physically or emotionally available.

14. When I tell someone I have migraine, the response is usually:
“I’m sorry to hear that.” “I have a _____ who has migraines.” “Have you tried______?”

15. When someone tells me they have migraine, I think:
I hope that they really have headaches and have never had to deal with a real migraine. For most of my life I have tried to keep my migraines a secret because I was embarrassed, felt weak, was worried about people’s reactions so now, I think that the more we’re out of the closet about migraines and the more we take the opportunity to talk to people and educate when asked, the better for all of us.

16. When I see commercials about migraine treatments, I think:
I wish that product had worked for me. This gives people the mistaken impression that if I’d just take that pill, everything would be fine. I’m glad there is increased awareness about migraines and am happy that pharmaceutical companies have realized there is money to be made in treating migraines and so are doing R&D.

17. My best coping tools are:
a warm bed in a dark, quiet room, an ice pack for my eyes, breathing and meditation techniques to manage the emotions, my dogs lying quietly in the room with me until I feel better

18. I find comfort in:
My husband’s understanding of how bad it is, his support and willingness to lay down quietly next to me at times when I can tolerate the closeness, massage when I can tolerate it (my husband is a massage therapist), my dogs, knowing that many years of migraine have given me the experience to weather the storm and the coping techniques that help me

19. I get angry when people say:
You should just “power through it.” If you just _____, you’ll quit having these headaches.”

20. I like it when people say:
I’m so sorry you have to deal with that. What/where can you eat that will work for you? I’m really impressed with how well you handle this.

21. Something kind someone can do for me during a migraine attack is:
Be quiet or lower the lights without acting irritated. When I’m ready to eat, bring me the food I ask for even if it’s quirky or they have to go to the store. If I have a low-level migraine that’s lingering, be will to sit and talk quietly with me about pleasant things.

22. The best thing(s) a doctor has ever said to me about migraine is:
Migraine is very interesting. I have a lot of patients with migraine so I keep up to date with the research. You don’t need to put on a brave face/be tough. Do you need something for the pain right now? Everyone’s migraine symptoms and triggers are different.

23. The hardest thing to accept about having migraine is:
That it never goes away and even perfect trigger management won’t make me migraine free. The worry of escalation or chronic daily headache. The worry that menopause won’t help and I’ll be feeling this bad forever – I’ve had a substantial increase in migraines as I’ve gotten older. The fact that there is no answer, no comprehensive list of things to do/not do. The worst is the limitations in every part of my life, even though all that constant vigilance doesn’t end migraines.

24. Migraine has taught me:
To take charge of my own health and my own healthcare. To appreciate what I have while I have it. To do the best I can and try to not worry about the rest. To rely on the people who love me and to try to be reliable in return when I can.

25. The quotation, motto, mantra, or scripture that gets me through an attack is:
Migraine is fascinating. Thinking of my triggers, symptoms, coping strategies as endlessly fascinating and complex has helped me manage the fear, shame and depression I used to feel so strongly.

26. If I could go back to the early days of my diagnosis, I would tell myself:
To start managing my lifestyle and triggers earlier. To learn everything I could. To not be ashamed. To keep looking until I found a doctor who was educated on the subject AND who I clicked with .

27. The people who support me most are:
My husband and my sister.

28. The thing I most wish people understood about migraine is:
That is not just a headache. That it is a chronic, neurological condition that I have to manage every day. That I’m not being “difficult” when I say I can’t eat something or go somewhere. That just because I ate something or when somewhere one day doesn’t mean I can do it all the time. That just because I look ok doesn’t mean I feel ok.

29. Migraine and Headache Awareness Month is important to me because:
Because it reminds me I’m not alone. Because it reminds me that there is so much more awareness and research than there was 30 years ago when I was alone in the dark not know what to do.

30. One more thing I’d like to say about life with migraine is:
It’s my life and I try to live it every day.

30 Things Meme

Laura’s Life with Chronic Migraine

May 30, 2015May 10, 2016 reader

The is a reader-submitted post.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: 15 + days a month
3. I was diagnosed in: 2013
4. My comorbid conditions include: anxiety and depression. Who wouldn’t be depressed with 15 + migraine days a month?
5. I take __4__ medications/supplements each day for prevention and __3__ medications/supplements to treat an acute attack
6. My first migraine attack was: November 2012. I had migraines before but this was the beginning of the debilitating attacks I now experience regularly.
7. My most disabling migraine symptoms are: blinding, searing pain, inability to tolerate any light or sound, nausea and vomiting.
8. My strangest migraine symptoms are: intense awareness of smells and strong taste buds.
9. My biggest migraine triggers are: weather and stress.
10. I know a migraine attack is coming on when: I feel tired for no reason, when the weather is changing I am guaranteed a migraine.
11. The most frustrating part about having a migraine attack is: having to cancel plans, letting other people down, not knowing how many days I will be out of commission.
12. During a migraine attack, I worry most about: my daughter and letting her down, whether I will end up in the ER, controlling the nausea and pain.
13. When I think about migraine between attacks, I think: it’s only a matter of time. I try to cherish every second of non-migraine days.
14. When I tell someone I have migraine, the response is usually: complete lack of understanding or ‘Have you tried this?’ and of course I already have.
15. When someone tells me they have migraine, I think: Poor soul! I don’t wish migraines on anyone so I automatically feel terrible for someone who experiences them. On the other hand, I feel like I might have found someone who understands my life.
16. When I see commercials about migraine treatments, I think: Why don’t any of those treatments work for me? How is it possible that of all the migraine drugs available I don’t benefit from any of them?
17. My best coping tools are: prayer and sleep.
18. I find comfort in: my faith.
19. I get angry when people say: it can’t be that bad. Or when people get angry with me when I have to cancel plans at the last minute. I’ve lost friends and a husband due to chronic migraine. People don’t understand the guilt the migraineur feels letting friends and family down when she is sick.
20. I like it when people say: they know my migraines aren’t my fault and they are praying for me.
21. Something kind someone can do for me during a migraine attack is: acknowledge what I am experiencing. Treat me like any other person with a disabling condition. Ask what you can do to help. This never happens with people who suffer from migraines. Most people just assume they are having a bad headache. They don’t understand the disease.
22. The best thing(s) a doctor has ever said to me about migraine is: I guess that it is a real condition and that I have tried everything available to combat my migraines so I shouldn’t feel guilty about something I cannot control.
23. The hardest thing to accept about having migraine is: it’s incurable. No matter what I do it is part of my life – a huge part.
24. Migraine has taught me: I can’t control everything in my life. I have turned my migraines over to God.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Romans 8:28, Jeremiah 29:11
26. If I could go back to the early days of my diagnosis, I would tell myself: This will be the hardest thing you ever experience with the most heartache, but you will survive the darkest days. Don’t ever give up.
27. The people who support me most are: my boyfriend, my best friend (both of whom came into my life after my migraines had taken hold of my life), my parents, one of my sisters, most of my oldest friends and my husband deserted me.
28. The thing I most wish people understood about migraine is: it’s a real disease and far more than a bad headache.
29. Migraine and Headache Awareness Month is important to me because: anything that brings awareness to my suffering is a positive thing. People need to understand the truth about migraine.
30. One more thing I’d like to say about life with migraine is: it’s almost impossible at times but it is still worth living and still rewarding despite the pain and losses I’ve suffered. There are people who make an effort to understand this disease and love me anyway.