Tag: chronic migraine

30 Things Meme

30 Things about John’s Life with Chronic Migraine

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This is a reader-submitted story.

1. My diagnosis is: chronic migraine
2. My migraine attack frequency is: daily, sometimes twice a day. Typically, if I take a triptan, what has started out as a 5 will decrease to a 3 or so (although the pain never disappears). I have to hoard my triptans sometimes, though, since I don’t have enough for bad months (like in the spring and fall), so at those times, I’m left with no fallback plan.
3. I was diagnosed in: 1990
4. My comorbid conditions include: bipolar disorder
5. I take 3 medications/supplements each day for prevention and 7 (not all at the same time; I cycle) medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 18.
7. My most disabling migraine symptoms are: head pain. If I’m at work, my photophobia makes the fluorescent lights difficult. In severe cases, vomiting makes it hard to deal with life.
8. My strangest migraine symptoms are: memory issues. I’m also very atypical in that I usually get bilateral head pain.
9. My biggest migraine triggers are: dehydration, weather changes, irregular sleep, and smells (perfume and cigarette smoke are at the top of that list)
10. I know a migraine attack is coming on when: the pain starts. I don’t get auras, so I sometimes have no warning. I can tell if the migraine is going to be bad or not (usually), but only because I’ve been getting them for more than 30 years. Sometimes my cognitive symptoms start first, and that makes treatment harder, because I have difficulty identifying the symptoms as migraine-related.
11. The most frustrating part about having a migraine attack is: my lack of ability to function normally, both at home (with my kids and socially) and at work (I’m a college teacher, so I really can’t take days off during the semester.)
12. During a migraine attack, I worry most about: getting through my classes for the day and then driving home. I have a 90-mile commute.
13. When I think about migraine between attacks, I think: I don’t think, I worry, all the time, about getting my next attack, how bad it will be, and how it will affect my life.
14. When I tell someone I have migraine, the response is usually: sympathetic. This has changed over the years. I used to get yelled at by my bosses for needing to take time off (this was before I became a teacher). Now, people have heard a lot about chronic pain, and even if they can’t truly understand it, they realize that it can be disabling.
15. When someone tells me they have migraine, I think: total empathy.
16. When I see commercials about migraine treatments, I think: It’s good to raise awareness. However, I’ve probably tried it, so it doesn’t give me any new hope for treatment of my own migraine.
17. My best coping tools are: medications and dark rooms.
18. I find comfort in: close friends and the hope for future treatments
19. I get angry when people say: “Oh, I understand, I had a headache once!”
20. I like it when people say: “What can I do for you?”
21. Something kind someone can do for me during a migraine attack is: help me find a dark room (and sometimes an icepack).
22. The best thing(s) a doctor has ever said to me about migraine is: “If this doesn’t work, we’ll try something else. There’s a lot still out there.”
23. The hardest thing to accept about having migraine is: that I need to keep my hope for effective treatment alive.
24. Migraine has taught me: I’m stronger than I think I am. I guess the way I worded it that way kind of signifies that I haven’t fully internalized it yet, but I’m getting there.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: No mud, no lotus.
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t give up hope.
27. The people who support me most are: My closest friends and (surprisingly, given my history) my boss.
28. The thing I most wish people understood about migraine is: that it is way more than just a headache.
29. Migraine and Headache Awareness Month is important to me because: it helps raise awareness about the true nature of migraine.
30. One more thing I’d like to say about life with migraine is: that I started meditating two weeks ago, not just for migraine, but for bipolar, and general relaxation and self-esteem. It’s too early to tell if it is going to do any good for the first three of those goals, but my self-esteem has improved just from having maintained a daily practice. I’d tried quite a few times before, but never managed more than two or three days in a row. I’m trying to enjoy meditating just for its own sake, but I can’t help thinking that it might eventually help my migraine.

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.

30 Things Meme

30 Things About My Life with Migraines

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This is a reader-submitted story.

1. My diagnosis is: Chronic Intractable Migraine, Chronic Headache, Chiari Malformation
2. My migraine attack frequency is: at least 2-3 times a week
3. I was diagnosed in: 2000, but have been suffering with them for nearly 30 years
4. My comorbid conditions include: spondylosis, cervical & lumbar radiculopathy, brachial neuritis, restless leg syndrome
5. I take 5 medications/supplements each day for prevention and 4-5 medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 5 or 6 years old.
7. My most disabling migraine symptoms are: photo and auditory sensitivity, dizziness, pain, nausea
8. My strangest migraine symptoms are: smelling smoke when there is no smoke around me
9. My biggest migraine triggers are: turning my head to quickly, sneezing
10. I know a migraine attack is coming on when: i start to see floaters and/or smell smoke
11. The most frustrating part about having a migraine attack is: how it keeps me from doing things – and knowing that I’m being judged by those who say/think “another headache”
12. During a migraine attack, I worry most about: how long it will keep me down… I’ve had some last for 3 weeks
13. When I think about migraine between attacks, I think: Wow, I’ve gone two days?
14. When I tell someone I have migraine, the response is usually: “I get headaches too”
15. When someone tells me they have migraine, I think: maybe someone will finally understand
16. When I see commercials about migraine treatments, I think: been there, done that
17. My best coping tools are: retreating to my dark, cool migraine cave
18. I find comfort in: my husband, because he never judges and is my rock
19. I get angry when people say: another headache?
20. I like it when people say: it’s okay – I understand (and mean it)
21. Something kind someone can do for me during a migraine attack is: understand that I have to go in hiding
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 I’ve tried everything and been told there’s not much any doctor can do
24. Migraine has taught me: you can’t look at a person and judge them and think you know what they go through in life, people can put on a mask and be in a world of pain
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I’ve survived this far, I can’t let it beat me now
26. If I could go back to the early days of my diagnosis, I would tell myself: not to get my hopes up for finding a cure
27. The people who support me most are: my husband and mom
28. The thing I most wish people understood about migraine is: it isn’t “just a headache”
29. Migraine and Headache Awareness Month is important to me because: pain is my life, and if I can do one small thing to help someone else, I will
30. One more thing I’d like to say about life with migraine is: take it one day at a time

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.

30 Things Meme

30 Things About My Life with Chronic Migraine

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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.

30 Things Meme

30 Things About My Life With Migraine

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This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine with Cluster Headaches, Nummular Headache
2. My migraine attack frequency is: More than 15 days a month lasting days, weeks or months
3. I was diagnosed in: 2009
4. My comorbid conditions include: lupus and/or Sjorgrens, Chronic Kidney Disease Stage 3, Hypoglycemia, elevated pancreatic lipase and amylase enzymes, cataracts and others
5. I take __2__ medications/supplements each day for prevention and __6__ medications/supplements to treat an acute attack
6. My first migraine attack was: in my 20’s
7. My most disabling migraine symptoms are: throbbing pain, chronic nausea
8. My strangest migraine symptoms are: decline in verbal skills, word recall, memory lapses
9. My biggest migraine triggers are: Exercise, Strenuous Activity, Skipping Meals, Eratic Glucose Levels, Anxiety, some muscle relaxers like Flexeral
10. I know a migraine attack is coming on when: I become sensitive to noise and light. A spot on the right side of my head begins to hurt.
11. The most frustrating part about having a migraine attack is: Not participating in my own life, not being able to do anything except lay down in the dark in pain, boredom, not being able to eat due to nausea. I miss being able to enjoy food, being fit and feeling healthy.
12. During a migraine attack, I worry most about: important things like paying bills, messy house, communicating less with my daughter, leaving my husband alone to cope with everything and the stress he experiences as a result
13. When I think about migraine between attacks, I think: Maybe I can have a “normal” day today. How much can I get done before the next attack?
14. When I tell someone I have migraine, the response is usually: Advice that I’ve already researched or tried, “you can’t be sick as often as you say you are”, or “I hope you feel better soon”, “I understand”.
15. When someone tells me they have migraine, I think: I hope it doesn’t last long, and that the pain isn’t unbearable. I wonder if there’s anything I can do, and how much does he or she know about their condition.
16. When I see commercials about migraine treatments, I think: I’d like to try that. If it’s an over the counter treatment, I get angry because I got my first medication overuse headache from Excedrine for migraine.
17. My best coping tools are: meditation, taking abortives when migraine symptoms begin
18. I find comfort in: my husband’s unwavering support
19. I get angry when people say: migraines are some type of mental health condition.
20. I like it when people say: It must be difficult for you. I understand that it can be a debilitating illness. Is there anything I can do to help? I will say “no”, but I will feel appreciative of the offer.
21. Something kind someone can do for me during a migraine attack is: Ease my guilt by showing empathy and understanding.
22. The best thing(s) a doctor has ever said to me about migraine is: We’re going to try Botox because you meet insurance requirements.
23. The hardest thing to accept about having migraine is: Feeling generally unhealthy and losing the ability to workout enough to stay physically fit. I miss traveling as much as before chronic migraine hit. Taking so many meds when I have Chronic Kidney Disease.
24. Migraine has taught me: To appreciate my pain free days, my migraines do not define me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Let go of what I can’t control.
26. If I could go back to the early days of my diagnosis, I would tell myself: Enjoy the days without migraine, treat them quickly, follow OTC labels regarding number of days to use medication, and get medical advice immediately following the last dose if I’m still experiencing pain.
27. The people who support me most are: My husband, my mother-in-law and my sister-in-law.
28. The thing I most wish people understood about migraine is: It is a neurological disease.
29. Migraine and Headache Awareness Month is important to me because: I hope it will stimulate research and better treatments. Also, I hope that my family will be willing to learn more about migraine which could lead to understanding.
30. One more thing I’d like to say about life with migraine is: my migraines became chronic in 2009, and completely changed my life. I’ve had to give up all physical activities that I enjoyed so much. My medications, doctor appointments , Emergency Room visits alternative treatments and hospital stay have eaten up our savings. It is an expensive disability for the patient and healthcare industry. An effective treatment specifically for migraine is critical and beneficial for the country as well as the Migraineur, the families and friends touched by migraine disease.

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 a Complicated and Intractable Migraine

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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.