Search Results for “guilt” – The Daily Headache

Life with migraine in patients’ own words

Kerrie Smyres — Fri, 20 Aug 2021 15:44:00 +0000

Online, it’s easy to find people sharing what it’s like to life with migraine and the impact it has on their lives. Take a look at medical literature and patients’ experiences are scarce. In part, that’s by design—medical research largely looks at the pathophysiology and treatment options for an illness rather than focusing on patients’ experiences—but it’s also incomplete. How can health care providers know how to best treat people with migraine if they don’t understand the experience of living with the condition?

There are excellent studies based on surveys of patients responding to questions about life with migraine. That’s how we know the level of disability people experience during migraine attacks, the impact of migraine on the family, and the degree of stigma patients experience, for example. They provide insight, but not in the patients’ own words.

Which is why I was thrilled to find Learning the Full Impact of Migraine Through Patients Voices: A Qualitative Study, published in the July/August 2021 issue of the journal Headache. It shares the experience of living with migraine as told through the stories of people with migraine.

This is significant research because it moves patients stories out of the realm of anecdote and turns them into data with a fairly large number of participants. The idea of stories becoming data may seem off-putting, but it’s incredibly useful for painting a broader picture of life with migraine. Health care providers are trained in science. While the best providers take anecdotes into account when treating patients, they still rely heavily on data. This study provides data in patients’ own words.

The themes that emerged resonate deeply with my experience of migraine and the experiences of others that I’ve heard over 16 years of advocacy work. The six themes and their subthemes are:

Overall negative impact on life:

Migraine controls life
Migraine makes life more difficult
Migraine attacks are disabling
Lack of control over migraine attacks
Pushing through migraine attacks

Migraine’s impact on emotional health:

Isolation
Anxiety
Frustration/anger
Guilt
Mood changes/irritability
Depression/hopelessness

Migraine’s impact on cognitive function:

Trouble concentrating
Difficulty communicating

Migraine’s impact on specific parts of life:

Work/career (which results in guilt, change of job status, presenteeism, financial impact, school impact)
Family life (which results in frustration, guilt, disrupted time)
Social life (which results in irritability, altered plans, communication issues)

Fear and avoidance:

Assuming the worst scenario for attacks
Fearing future attacks
Avoiding things to try to avoid a migraine attack

Stigma:

Externalized
Internalized

Patients stories were gathered as part of research on mindfulness-based stress reduction for migraine. The original intent wasn’t to tell the stories of patients, but to capture patients’ experiences during the research. So they weren’t asked generally about how migraine impacted their emotional wellbeing, but were asked if the intervention being tested in the research impacted their emotional wellbeing. That’s not a flaw, but an exciting opportunity for future research. From years of listening to people with migraine tell their stories, I expect that direct questions would show migraine’s impact on quality of life is even greater than these researchers found.

What do you think? Do these themes resonate with you? Are there other themes you think should be included?

^{Photo by Mikel Parera on Unsplash}

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

30 Things About My Life With Migraines

reader — Tue, 23 Aug 2016 13:38:36 +0000

This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme.

1. My diagnosis is: chronic migraines
2. My migraine attack frequency is: Pretty much everyday I have some form of migraine symptoms – the severity varies from day to day.
3. I was diagnosed in: 2002
4. My comorbid conditions include: Bipolar type II, panic disorder w/o agoraphobia, anxiety, PTSD, C-PTSD, and thyroid hormone imbalance due to thyroid cancer/lobectomy of right lobe.
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack: I have been on a few prophylactic meds including Topamax and am currently testing out the efficacy of Effexor. I currently have prescriptions for 9 different medications used to treat acute attacks.
6. My first migraine attack was: 4/24/99
7. My most disabling migraine symptoms are: Severe nausea, vertigo, dizziness, disabling pain and muscle weakness.
8. My strangest migraine symptoms are: Aphasia, hypomania, Alice In Wonderland syndrome, food cravings, and chronic tinnitus in my left ear.
9. My biggest migraine triggers are: Marijuana smoke, emotional stress/trauma/stress-letdown, tannins, physical stress/trauma, insomnia, altitude changes, changes in barometric pressure, and temperature changes.
10. I know a migraine attack is coming on when: The Left Eye Twitch of Doom, an increase in sensitivity to smell, taste, sound, light, touch and temperature changes.
11. The most frustrating part about having a migraine attack is: I’ve had a moderate/severe migraine headache most days in the last 3 years – most of the time when they become intense the meds I have either don’t work or make me feel worse. Also having to go to the ER in an acute attack with intense symptoms and they aren’t able to give me any relief aside from rehydration via IV fluids.
12. During a migraine attack, I worry most about: Throwing up because it makes the pain and other symptoms 10x worse.
13. When I think about migraine between attacks, I think: When is the next one coming and how can I get to the ER without anyone to give me a ride.
14. When I tell someone I have migraine, the response is usually: Sympathy, apathy or skepticism.
15. When someone tells me they have migraine, I think: I’m so sorry that someone else experiences this disabling disease.
16. When I see commercials about migraine treatments, I think: Yeah, right, that’ll work. Not.
17. My best coping tools are: Cold packs, noise canceling headphones, dark and cool room, and antinausea meds.
18. I find comfort in: My horse and music
19. I get angry when people say: “Sorry you’re having a bit of a headache” or “It’s just a headache” or “You just need to do more cardio/eliminate gluten/corn/wheat, etc.” And my all time favorite: “Again?? That’s four days in a row!”
20. I like it when people say: “Let me turn the lights off for you and bring you some cold packs.”
21. Something kind someone can do for me during a migraine attack is: Understand that it’s not just head pain – nausea and dizziness are often more disabling for me.
22. The best thing(s) a doctor has ever said to me about migraine is: “You’re doing everything right.”
23. The hardest thing to accept about having migraine is: that I can’t depend on myself; I can’t support myself because I can’t work and I almost invariably let people down.
24. Migraine has taught me: not all pain is visible and everyone’s experience is different.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I have yet to find one. *Edit* “It’s the guilt of what reality has given me. Making sense of all mistakes and my stupidity, and when you’re sick you seem to think you’ve failed eternally.” ~ Blue October “Overweight”
26. If I could go back to the early days of my diagnosis, I would tell myself: Fight and advocate for yourself!
27. The people who support me most are: A few close friends and my horse.
28. The thing I most wish people understood about migraine is: I have no control over when the symptoms will become disabling – I may have just enough energy to do a couple of things in a day but then just completely crash afterwards.
29. Migraine and Headache Awareness Month is important to me because: It gives louder volume to fighting the stigma of living with migraine and let’s other sufferers know they aren’t alone.
30. One more thing I’d like to say about life with migraine is: Search for and take joy in the small things. Creating a small but meaningful life is the best thing for me. I’d also like to say that it is fucking exhausting trying to convince doctors of how much pain I’m in.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Migraine Mood Changes: Depression-Like Symptoms

Kerrie Smyres — Mon, 08 Aug 2016 16:42:32 +0000

I was standing in the bedroom alone with my eyes closed, taking deep breaths. I didn’t know Hart had entered the room until he asked, “What’s up?” “I’m nervous about you leaving,” I said, and the tears I’d been keeping at bay burst forth.

Even though I don’t have an anxiety disorder, I have subclinical levels of anxiety in two situations: sleeping when I’m home alone all night and when Hart travels long distances. The Fourth of July brought both of those. During a migraine attack. It led to one of a handful of full-blown panic attacks I’ve ever experienced. It was horrible, but made a lot of sense in retrospect. For the few weeks prior to that night, migraine attacks were going straight for my mood.

I first noticed it during a migraine attack on Father’s Day. I had to stop looking at Facebook posts because they made me miss my dad too much. This isn’t abnormal in the realm of grief, but I also cried when I realized that the attack would keep Hart and me from enjoying our day’s plans. Even that’s an understandable reaction to the situation. Becoming racked with guilt when the precarious stack I’d built in the freezer caused Hart to drop a container is not normal. Instability in the freezer is a common occurrence in our household and it’s usually my fault. The container didn’t break and Hart wasn’t upset, but I felt like an utter failure. These are all indications of depression, but my mood returned to normal with that particularly intense migraine attack cleared.

Migraine attacks bring major mood changes for me maybe a dozen times a year. The experience is unpleasant and unpredictable, but never enduring. Until this summer. During many, but not all, of my migraine attacks over a three-week period, I cried at song lyrics that wouldn’t normally make me cry and was quick to anger in low-stakes situations, like not being able to find the pen I wanted to use. These are telltale symptoms of clinical depression for me. So much so that my doctor wanted me to start another antidepressant.

I held off on the meds for a week because it just didn’t feel right. It didn’t follow the pattern for depression. Then again, it didn’t follow the pattern for migraine mood changes, either. Still, I watched and waited. By the time that week was up, mood disturbances were no longer regularly part of my migraine attacks.

Migraine symptoms are so weird. (I swear I say that at least once a month.) They’re both predictable and unpredictable. I expect to have associated mood changes occasionally, but this is the first time I can recall three weeks during which many attacks were accompanied by depression-like symptoms. I’m wondering if the uptick was caused by a short-term change in my brain similar to what my doctor described when I suddenly became sensitive to Wellbutrin’s side effects:

The brain you have after a migraine attacks is not the same brain as you had before it. Any medication that acts on the central nervous system, like antidepressants, could interact with this new brain in a different way than before, causing an increase in side effects. My dose hadn’t changed, my brain had.

The changes to your brain after an attack are not permanent, so please don’t let this scare you. It’s more like a storm with high winds came through and there’s still dirt and debris in the street. The street sweeper will get to it eventually, but it may take some time.

This explanation makes intuitive sense. The Father’s Day migraine attack that kicked all this off was particularly intense and odd. My thinking was way off. Despite being drug-free, I was thinking as if I’d smoked marijuana. That’s never happened in quite this same way before. Perhaps the celery that triggered the attack was genetically modified to have a psychedelic effect.

Whatever the explanation, the problem seems to have subsided for now. My mood has been stable for about a month. I’m grateful for the increased empathy that came from my tiny glimpse of insight into what panic attacks can be like. And I will be grateful if I never have to experience one again.

(In case you’re curious, the grief I’ve been wrestling with this summer has been entirely independent of migraine attacks and migraine mood changes.)

My migraine journey

reader — Sun, 26 Jun 2016 18:52:48 +0000

This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme.

1. My diagnosis is: Chronic, Complex Migraine with TIA
2. My migraine attack frequency is: pretty much daily with at least 3-4 a week that keep me from normal activity
3. I was diagnosed in: 2005 officially. I have had headaches my entire life though
4. My comorbid conditions include: knife stabbing pains in base of head by neck, throbbing intense pain on top of head, Nausea , blind spots in vision, irritability, numbness on right side of body
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack: daily- blood pressure, anti anxiety , anti depressants and triptipans. To treat an attack- fioracette
6. My first migraine attack was: I believe in my teen years
7. My most disabling migraine symptoms are: unable to put words together and pain
8. My strangest migraine symptoms are: before major attacks hit I tend to yawn a rediculous amount and experience euphoria
9. My biggest migraine triggers are: barometric change and heat
10. I know a migraine attack is coming on when: Vision gets blurry, then blind spots, feel anxiety
11. The most frustrating part about having a migraine attack is: that I feel like a nuisance to my loved ones. Even though they are incredibly supportive to me, the guilt kills me! I think non migraine people do tend to not understand the severity of the pain and symptoms. Which in turn makes me feel the need to try to “push” through an attack to keep plans.
12. During a migraine attack, I worry most about: letting people down.
13. When I think about migraine between attacks, I think: I need to get as much as possible done between attacks to try to have some kind of life. I often push myself to hard which leads to another attack. Horrible cycle. My wonderful hubby gets to keep me from over doing it but it’s hard not to.
14. When I tell someone I have migraine, the response is usually: a look of “oh really, you mean headaches?”
15. When someone tells me they have migraine, I think: God bless them and their family
16. When I see commercials about migraine treatments, I think: they are a joke! They are part of the reason society doesn’t understand how TRUELY debilitating they are.
17. My best coping tools are:the love of my family and friends
18. I find comfort in: my dark, cold quiet room with lots of pillows and quilts!
19. I get angry when people say: ” just take some Advil and drink water, you’ll be fine”
20. I like it when people say: ” get some rest and we will take care of everything else”
21. Something kind someone can do for me during a migraine attack is: just to be understanding. To not get upset if I don’t answer calls or texts for a few days while I am dealing with it.
22. The best thing(s) a doctor has ever said to me about migraine is: I will stick with it until we get the right combo of MEDS and lifestyle to help you
23. The hardest thing to accept about having migraine is: the depression that goes with it and constant feeling of letting people down.
24. Migraine has taught me: I am not in complete control of my life.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: the serenity prayer… God grant me the serenity to accept the things I can not change, courage to change
The things I can and the strength to know the difference.
26. If I could go back to the early days of my diagnosis, I would tell myself: Relax, it’s gonna be a long journey.
27. The people who support me most are: my mom, husband, children and best friend
28. The thing I most wish people understood about migraine is: They are not predictable. They always seem to come at then worst time and no two migraines are ever the same.
29. Migraine and Headache Awareness Month is important to me because: I wish there was more research done to help people
30. One more thing I’d like to say about life with migraine is: As much as it appears to be exaggerated or convenient or a cry for attention: everyone suffers differently. Each person has their own ways of dealing with them and I can promise each person feels guilt with them. I wish society in general was better educated on them

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

My Chronic Migraine

reader — Tue, 21 Jun 2016 14:23:22 +0000

This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme.

1. My diagnosis is: Chronic Complex Migraine.
2. My migraine attack frequency is: daily headache, migraine 3-6 days weekly with current treatment.
3. I was diagnosed in: Initial migraine dx in 1997, Chronic Complex dx in 2014.
4. My comorbid conditions include: Fibromyalgia, gluten and lactose sensitivity, TMJ
5. I take 12 medications/supplements each day for prevention and 3+ medications/supplements to treat an acute attack in addition to self-administered IM shots. Also, I receive 30+ injections in my face, head, neck and shoulders every three months.
6. My first migraine attack was: when I was ten years old.
7. My most disabling migraine symptoms are: Intense pain, unrelenting nausea.
8. My strangest migraine symptoms are: Inability to find words or speak clearly, numb lips.
9. My biggest migraine triggers are: Sleep, Heat, Weather Changes, Stress, Menstrual Cycle
10. I know a migraine attack is coming on when: I begin stuttering and using incorrect wording, I begin seeing sparkles and rainbows, and my ears feel full.
11. The most frustrating part about having a migraine attack is: Missing out on so much life and letting loved ones down repeatedly.
12. During a migraine attack, I worry most about: Making sure my children are cared for.
13. When I think about migraine between attacks, I think: Better not travel too far from home, bring medications just in case, WHEN will the next one hit, please, God, let it be a good day.
14. When I tell someone I have migraine, the response is usually: Random people, “Oh, I get headaches, too.” Loved ones, “I’m so sorry, can I help?”
15. When someone tells me they have migraine, I think: “God, please remove their pain and symptoms and enable them to live a normal life.”
16. When I see commercials about migraine treatments, I think: “Yup, tried that.” And, “Yeah, if it were that easy!”
17. My best coping tools are: the support of my family and friends and prayer.
18. I find comfort in: Cool, dark, quiet rooms and praying.
19. I get angry when people say: “So, you’ll be better when?”
20. I like it when people say: “Can I help?”
21. Something kind someone can do for me during a migraine attack is: Pray for relief and Keep my area quiet and undisturbed.
22. The best thing(s) a doctor has ever said to me about migraine is: “You are my partner.”
23. The hardest thing to accept about having migraine is: Continuously letting people down and knowing it’s not going to cease.
24. Migraine has taught me: Live in the moment and Slow down. Also, I’ve met many others with varying illnesses and I feel like I have a more compassionate spirit with them due to living with migraine.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “This too shall pass.” “Be still and know that I am God.”
26. If I could go back to the early days of my diagnosis, I would tell myself: Make memories now.
27. The people who support me most are: my husband, children, parents, in-laws, friends. I’m very blessed with a large, understanding group of loved ones.
28. The thing I most wish people understood about migraine is: I’m not doing it to you. It’s happening to me. Also, it’s not just a “headache.”
29. Migraine and Headache Awareness Month is important to me because: I can outwardly share my experiences in hopes of helping another.
30. One more thing I’d like to say about life with migraine is: It’s challenging in ways you’d never think. The giggles of my children are my favorite sounds, except during an attack. You hold back tears no matter how bad it hurts because you know that it will only increase the pain. Cancelling my daughter’s fifth birthday party, missing our anniversary trip, not being able to attend family holidays and functions weigh heavily on my heart. The guilt stabs at inopportune times.
I’m trying very hard to not let migraine own me, but it is exhausting to keep fighting every.single.day.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

30 Things about My Migraine

reader — Sat, 11 Jun 2016 16:20:22 +0000

Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme.

1. My diagnosis is: Transformed Migraine, Chronic Migraine and a bunch of other Migraine Types
2. My migraine attack frequency is: Every single minute of every single day, although it varies in intensity
3. I was diagnosed in: 2005
4. My comorbid conditions include: depression
5. I take 1____ medications/supplements each day for prevention and __3__ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was a teenager, but I didn’t know I had migraines
7. My most disabling migraine symptoms are: the intense pain, the slowness of thought, and the nausea
8. My strangest migraine symptoms are: I can’t find the right words and often misspeak
9. My biggest migraine triggers are: Weather and odors
10. I know a migraine attack is coming on when: My eyes start to hurt and I have a problem finding words
11. The most frustrating part about having a migraine attack is: staying in bed and missing life
12. During a migraine attack, I worry most about: getting fired
13. When I think about migraine between attacks, I think: how long will this last
14. When I tell someone I have migraine, the response is usually: Oh, so do I or so does so and so.
15. When someone tells me they have migraine, I think: I’m sorry
16. When I see commercials about migraine treatments, I think: another thing to try, maybe this one is the key to a solution
17. My best coping tools are: just willing myself to get through whatever situation I am in when the pain gets intense
18. I find comfort in: finding activities and hobbies I can still do, I have taken up scrapbooking and genealogy since the migraines have been bad
19. I get angry when people say: Why don’t you go out on disability? (like it’s that easy)
20. I like it when people say: Are you feeling better?
21. Something kind someone can do for me during a migraine attack is: Not make me feel guilty if I have to cancel plans.
22. The best thing(s) a doctor has ever said to me about migraine is: Everything I know about treating migraines I learned by treating you. (BTW, he’s a general neurologist but he has helped me more than some of the best known headache specialists on the East Coast)
23. The hardest thing to accept about having migraine is: I can’t do the things I want to do.
24. Migraine has taught me: to be more sympathetic to others
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Cast your cares on the Lord and He will sustain you.
26. If I could go back to the early days of my diagnosis, I would tell myself: Find a new doctor, now.
27. The people who support me most are: my doctor and my family.
28. The thing I most wish people understood about migraine is: there is a difference between daily migraine and a migraine that happens a few times a year. I know. I used to have just a few a year–it’s still difficult, but more manageable than a daily migraine.
29. Migraine and Headache Awareness Month is important to me because: people who want to be informed can be.
30. One more thing I’d like to say about life with migraine is: I still have hope that a treatment will be found that will change my life back to what it once was.

This is a reader-submitted story. Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Brianna’s 30 things about chronic daily headache

reader — Tue, 30 Jun 2015 19:50:16 +0000

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for __16__ years.
2. The first headache I remember is: I was younger than age ten.
3. After the headache started, it took __11 years____ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates. Level fluctuates, but the pain is always there.
5. My typical pain level ranges from: 3-8
6. In addition to pain, my symptoms include: photosensitivity, phonosensitivity, nausea, racing heartbeat, dilated pupils, insomnia.
7. Treatments I have tried include: massage, chiropractic, homotherapy, many different medications both over the counter and prescription.
8. I take __4__ medications/supplements each day for prevention and __3__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: go to bed, dark room, take meds, try and sleep.
10. The most frustrating part about having CDH is: not knowing if it will be a good or bad day.
11. Because of CDH, I worry about: disappointing those I love.
12. When I tell someone I have CDH, the response is usually: how do you do it?
13. When I see how little research and information exists on CDH, I feel: frustrated and sad.
14. Having CDH has affected my work/school life by: I have had to cut back my work schedule severely.
15. Having CDH has affected by family life by: My husband has had to take over and help with the daily household chores.
16. The one word that best describes my experience with CDH is: altering
17. My best coping tools are: encouragement from family and friends.
18. I find comfort in: fuzzy blankets and soft pillows!
19. I get angry when people say: not really angry, but sad: “I had a headache yesterday, not as bad as yours…” As if they diminish their own pain by comparing it with mine, when pain is such a subjective and personal thing.
20. I like it when people say: I know this is difficult for you, but I’m really happy to see you here anyway.
21. Something kind someone has done for me in relation to CDH is: my best friend is in the process of helping me put together a migraine coping kit, for when I’m not at home and it gets bad.
22. The best thing a doctor has ever said to me about CDH is: you’re not a lost cause, and we can help you feel better.
23. The hardest thing to accept about having CDH is: there is no cure right now, no medications that consistently help.
24. Having CDH has taught me: patience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Isaiah 33:24 – “and no resident will say “i am sick.”
26. If I could go back to the early days of my diagnosis, I would tell myself: this isn’t your fault, and hang in there.
27. The people who support me most are: My husband, my parents, and a few close friends.
28. The thing I most wish people understood about CDH is: it is always there, if I look okay it is because I have my “everything’s fine” mask on.
29. Migraine and Headache Awareness Month is important to me because: if awareness is increased, perhaps we can get more effective management tools.
30. One more thing I’d like to say about living with CDH is: I’m working on dealing with the unreasonable guilt I feel when I have to say no. I want to make everyone happy, but I can’t do that, and take care of myself at the same time. Also, I’m trying to give myself permission to make my health a priority.

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 About My Life With Migraine

reader — Mon, 22 Jun 2015 16:24:17 +0000

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.

30 Things About My Life With Migraine

reader — Thu, 18 Jun 2015 19:55:36 +0000

This is a reader-submitted story.

1. My diagnosis is: migraines
2. My migraine attack frequency is: approximately once a month right now; has been as much as 2-3x/week
3. I was diagnosed in: 1992
4. My comorbid conditions include: GAD, Factor V Leiden, Ischemic Colitis
5. I take __0__ medications/supplements each day for prevention and _2-3___ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 12-years-old and sitting in my English class…threw up everywhere
7. My most disabling migraine symptoms are: severe pain, light sensitivity, exhaustion
8. My strangest migraine symptoms are: confusion, not being able to put words into sentences, misusing words
9. My biggest migraine triggers are: preservatives, sugar, hormones, weather changes
10. I know a migraine attack is coming on when: I get an aura in one of my eyes; kind of looks like the fuzziness on a TV without a signal
11. The most frustrating part about having a migraine attack is: unpredictability. I never know when they are going to happen. “Good morning! You’re about to call in sick to work….again.”
12. During a migraine attack, I worry most about: work, what others are thinking about me (i.e. slacker, faker, etc.), my son’s perception of my health
13. When I think about migraine between attacks, I think: I focus on showing/demonstrating that I can carry my weight and be successful.
14. When I tell someone I have migraine, the response is usually: sympathetic and understanding
15. When someone tells me they have migraine, I think: how sad; I wish no one else would have to go through it.
16. When I see commercials about migraine treatments, I think: Maybe that would work, but then I’m scared to try it.
17. My best coping tools are: sleep, my hubby and son, losing myself in TV, heat, sunglasses, window treatments, joking about what I’m experiencing
18. I find comfort in: that it could be, and has been, much worse
19. I get angry when people say: migraines aren’t that bad
20. I like it when people say: they get it
21. Something kind someone can do for me during a migraine attack is: Can I put pillows over the windows for you? (makes it that much darker)
22. The best thing(s) a doctor has ever said to me about migraine is: You’re one of the most motivated patients we’ve had (in response to the work I did identifying my triggers)
23. The hardest thing to accept about having migraine is: again, the unpredictability; along with guilt about not meeting expectations and shame for thinking something is wrong with me.
24. Migraine has taught me: to live in the moment
25. The quotation, motto, mantra, or scripture that gets me through an attack is: It will be better soon.
26. If I could go back to the early days of my diagnosis, I would tell myself: to be patient and practice self-compassion
27. The people who support me most are: my hubby b/c he bears the brunt of everything when I’m down and out
28. The thing I most wish people understood about migraine is: how difficult it is to function after a migraine. It can be just as debilitating as the actual migraine.
29. Migraine and Headache Awareness Month is important to me because: I needed to know I’m not alone
30. One more thing I’d like to say about life with migraine is: It sucks, but I like to think it has made me a more compassionate and understanding person. Good things, right?

30 Things About My Life With Chronic Daily Headache

reader — Fri, 12 Jun 2015 20:21:13 +0000

This is a reader-submitted story.

1. I have had Chronic Daily Headache (CDH) for: About 7 years. I believe my headaches became chronic about 20 years ago, but they did not occur on a daily basis until approximately the past 7 years.

2. The first headache I remember is: Maybe when I was around 7 or 8 years old while our family was undergoing a lot of stress. I was also seeing some kind of spots and lights that were moving around in my dark room while I was trying to sleep at night. I mentioned them for a long time to my family before I was taken to a doctor. They thought I was just trying to get out of going to school. When I was finally taken to a doctor, I remember him saying he had no idea what they were and that “there were no signs of a brain tumor”. After the brain tumor comment, I never mentioned the headaches again to my family. Either they eventually went away or I just got used to them.

3. After the headache(s) started becoming chronic: It took about 20 years to get a diagnosis. Because I had a lot of pain in the sinus areas of my face, it was thought that I had a lot of sinus infections. But the antibiotics never cleared up the symptoms. Finally my doctor would order a CT scan of my sinuses and they were always clear. This cycle repeated about 3 times over at least 15 years.

4. My pain level fluctuates: It is always there, but fluctuates depending on the types of triggers I’m dealing with at the moment.

5. My typical pain level ranges from: Anywhere from 5 – 8 based on a pain scale of 1 – 10.

6. In addition to pain, my symptoms include: Dizziness, nausea, appetite loss, cognitive dysfunction, talking too much and/or too fast, feeling cold or hot, light sensitivity, sound sensitivity, nasal congestion, difficulty concentrating, difficulty sleeping, and more.

7. Treatments I have tried include: I have tried medications from several different classes, separately and combined with each other. My current and last doctor have both emphasized preventive medications rather than abortive or rescue. I do have a triptan that I can take up to 2 days per week if I get a migraine attack but since I have daily pain it can be hard to know when to take it. I am now using the Cefaly, getting Botox injections, and trying different preventive medications. I also have access to a prescription for a type of ergot medication that I can take one week/month if I am stuck in a bad cycle. I have had acupuncture treatments, been to a chiropractor, tried massage, physical therapy have tried natural supplements, and more.

8. I take 5 medications each day for prevention and can take one or more of 3 different medications when the pain becomes unbearable. I also use the Cefaly device for to reduce the frequency and intensity of the headache pain.

9. When the pain gets bad, I: Normally stay in the house and usually just rest or do some light stretching or housework. Sometimes I have something planned and I do my best to get out and go wherever I need to. I usually wear a heat patch on my back or near my neck to loosen up tight muscles every day. Sometimes I find it necessary to retreat to a dark, quiet room where there is little to no stimulation in order to quiet my brain, which gets overstimulated.

10. The most frustrating part about having CDH is: Feeling like I have let down my family by not being able to participate in things with them. I especially feel guilty about my daughter seeing me in bad shape. I want her to know that I want to be there for her in every way possible, but I can’t always do that and it hurts me because I don’t want her to feel rejected by me. But she is a toddler and can get loud and very active.

11. Because of CDH, I worry about: Mainly the same as #10. I don’t want my 2 year old daughter to think I don’t love and care for her just because I can’t be with her as much as I would like.

12. When I tell someone I have CDH, the response is usually: I only tell people that I feel may need to know. I have a problem with running late to activities because of the pain and some of my medications slow me down. My muscles are also quite deconditioned because of all the resting I have done. I get sidetracked easily too. So I don’t tell everyone, just those that may be affected by my behavior.

13. When I see how little research and information exists on CDH, I feel: Frustrated. I have been around the online migraine community since I was diagnosed and I know some progress has been made, but it’s discouraging to see so little change.

14. Having CDH has affected my work/school life by: Well, my situation is not so clear cut. My husband and I adopted a baby girl in 2013 and I took a leave of absence from my job at that time but I haven’t been able to return since other than to work on part time projects when I have time. In addition, the nature of my former job requires travel, which is difficult while our child is so young. In addition, our child has been sick so often that I think it would be difficult to keep any job since I have had to keep her at home a lot during the fall and winter months. She was hospitalized twice last winter. Now I’m exhausted from dealing with my migraines and my daughter’s health and need to spend some time focusing on getting myself better. However, I would love a part time job.

15. Having CDH has affected my family life by: Making it difficult or impossible to participate in certain activities with my husband and daughter. For example, my husband enjoys eating out in the evenings but I’m just too tired at time of day.

16. The one word that best describes my experience with CDH is: Demoralizing. I have had so many local doctors insinuate that my case is hopeless and there are days when I feel so angry.

17. My best coping tools are: Reading about the experiences of others with similar conditions and continuing to educate myself about this disease. I’m currently working on just simply accepting where I am right now and letting go of trying to fix myself. I am also taking private lessons on the Pilates Reformer to help strengthen certain muscles.

18. I find comfort in: My sweet cat, who always seems to know when I need him. He often sits on my lap when I need comfort.

19. I get angry when people say: Would you have still adopted your daughter if you knew your migraines would become worse afterwards? There is just no way to answer that question. Sure it’s hard, but we manage. She is a very caring little girl now that I’m so proud of. She gives the best hugs. Sometimes when I’m resting she will come up to me and pat me gently on my shoulder or back. She may also want to sit on my lap if I’m sitting down.

20. I like it when people say: Any kind of validation that what I’m going through is real and not made up is good. I don’t want to be treated differently than anyone else.

21. Something kind some has done for me in relation to CDH is: My husband has allowed me to rest while caring for our daughter in the evenings when I’m worn out. He also supports me in doing things to improve my health.

22. The best thing a doctor has ever said to me about CDH is: Anything kind and validating.

23. The hardest thing to accept about having CDH is: This isn’t a disease that will just improve on its own. I must actively work on managing my pain on a daily basis possibly for the rest of my life.

24. Having CDH has taught me: That I can’t just push myself hard and expect my body to do what I want it to do anymore. I used to do that all the time when I worked full time, but may not ever be able to do that again.

25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: “For this reason we never become discouraged. Even though our physical being is gradually decaying, yet our spiritual being is renewed day after day. And this small and temporary trouble we suffer will bring us a tremendous and eternal glory, much greater than the trouble. For we fix our attention, not on things that are seen, but on things that are unseen.” 2 Corinthians 4:16-18

26. If I could go back to the early days of my diagnosis, I would tell myself: Because I’m not so fond of surprises, I would warn myself to be patient because it may take going to a lot of doctors and trying a lot of treatments before I make any forward progress.

27. The people who support me most are: My husband and daughter. I have a few friends in the migraine community that have been very kind too.

28. The thing I most wish people understood about CDH is: I didn’t bring it on myself and it is a real disease.

29. Migraine and Headache Awareness Month is important to me because: Yes, it’s important. However, there is a difference between people who are open to learning about migraine disease and those that are not open or interested. It’s important to know the difference because to continue trying to educate someone with this type of attitude would be a waste of time and energy. Some people think migraineurs are just drug seekers or people trying to get out of some responsibility. In my experience, the migraineurs I know feel very bad when they have to miss something important due to a migraine. They very much dislike the disabling effects of this disease.

30. One more thing I’d like to say about living with CDH is: There are not enough doctors trained in diagnosing and treating the various types of migraine disorders that exist. CDH is only one type. I have also been diagnosed with Vestibular Migraine and I haven’t found a doctor that knows how to treat this type of headache disorder.