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.

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.

Curious about other readers’ stories? Here are all the 30 Things posts (in reverse chronological order) from this year and last.

30 Things posts have been coming in even though I haven’t promoted the project this year. Since readers are obviously eager to share their stories, I’m publishing this as a new call for submissions. I’ve updated the questions some from last year. All responses are welcome—whether you’ve never answered the 30 Things or did in 2015 and would like to take stock again this year. Here are my 2016 responses (and my 2015 ones):

Kerrie’s 30 Things About Life With Migraine

1. My diagnosis is: chronic migraine

2. My migraine attack or headache frequency is: daily (every time I eat unless I eat snacks that are 90% fat, no more than 270 calories, at least two hours apart, and contain a specific set of 10 foods)

3. The first migraine attack or headache I remember was: in class in the fifth grade. The teacher’s workroom off my classroom smelled of rose potpourri. I probably had attacks before that, but that’s the first one I know was a migraine attack. That smell still makes me panic nearly 30 years later.

4. My pain levels range from: Currently they range from a 2-4, with the very occasional 5. This is with a cocktail of preventive medications and supplements, continuous hormonal birth control, severe diet restrictions, and digestive enzymes. Before I found this regimen, the pain was regularly a 7-9 with some level 10 attacks (though I’m reluctant to label any of them a 10 for fear of tempting fate)

5. I was diagnosed in: 2002

6. My comorbid conditions include: depression, otherwise I’m remarkably healthy.

7. I take 21 pills (three different supplements/drugs) each day for prevention and 3 or 4 pills (two or three different drugs) to treat an acute attack

8. In addition to pain, other symptoms I experience include: fatigue and cognitive dysfunction are the worst; the list of other annoying, but not disabling symptoms is too long to tackle—it includes tooth pain, ear aches, cold feet, and frequent urination.

9. Treatments I have tried include: four dozen preventive meds and supplements, dietary changes, Botox, acupuncture, occipital nerve stimulator, Cefaly, Spring TMS, nasal surgery, TMJ surgery, a mouthguard, essential oils, organic food, acupressure, massage, Reiki, Chinese herbs (including scorpion tea), yoga, digestive enzymes… if you’ve heard of it, I’ve almost certainly tried it.

10. During a migraine attack or headache, I: have no energy and can’t think clearly.

11. My migraine attacks or headaches are triggered or get worse when: I eat or am exposed to odors. Currently, I get one almost every time I’m in a public place.

12. The most frustrating part about having migraine or a headache disorder is: not being able to function at the level I know I’m capable of.

13. Having migraine or a headache disorder causes me to worry about: every single thing I eat or drink (sometimes I even worry that water in a different city will be a trigger).

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m sorry, me too” or “My friend/cousin/partner has migraine—it’s way worse than just a headache.”

15. When I see ads or articles about migraine or headache disorders, I think: the misinformation seems to be increasing exponentially.

16. My best coping tools are: mindfulness.

17. I find comfort in: reading, writing, my loved ones.

18. I get angry when people say: “It’s just a mindset” or “Think positive.”

19. I like it when people say: “You don’t have to talk about it if you don’t want to.”

20. Something kind a person can do for me during a migraine attack or headache is: ask me if I want company or to be left alone, and not ask a thousand times how I’m feeling.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “I will never give up on you.”

22. Having migraine or a headache disorder has affected my work/school life by: changing it entirely. I can only work sporadically, which is frustrating. But I’ve been pleased to discover that writing, which was a peripheral skill in my pre-disability world, brings me great joy.

23. The hardest thing to accept about having migraine or a headache disorder is: not having control.

24. Having migraine or a headache disorder has taught me: experiencing an emotion is a lot easier than running from it.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: I’ve done the impossible before, I can do it again.

26. If I could go back to the early days of my diagnosis, I would tell myself: try a wide range of treatments before even considering surgery.

27. The people who support me most are: my awesome husband, family, friends, and readers

28. The thing I most wish people understood about migraine or headache disorders is: it’s nothing like getting an occasional headache.

29. Migraine and Headache Awareness Month is important to me because: the social stigma (from friends, family, coworkers, supervisors, teachers, and even health care providers) magnifies the physical symptoms.

30. One more thing I’d like to say about my migraine or headache disorder is: finding a therapist I click with has been invaluable. I have learned to get through a migraine attack without hating the fact that I’m having one, or stressing about everything I’m unable to do, or obsessing about what I could have done to trigger it.

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.

I’m sorry to report that I didn’t learn much from the gastroenterologist (I know many of you were eager to hear something that might help you). He doesn’t think it’s a functional GI problem, but is a neurological problem. He said he’d be willing to do the tests if I wanted them. I went in thinking I’d do them no matter what he said; now don’t think I will. After four years of exploring other avenues, I am inclined to agree with him that the issue is neurological. I asked about using preventive migraine meds that would target the neurotransmitters and hormones that are released at the start of digestion. He shook his head and said he was sorry that he couldn’t help with that. I asked my headache specialist the same day and got more information, but still the same outcome—it is impossible. He said that the body is flooded with neurotransmitters during digestion. It would be impossible to pinpoint which one or ones are problematic. Even if we could, it’s unlikely there are drugs that work on those neurotransmitters.

My headache specialist did confirm that there’s a small set of people who have migraine attacks triggered by eating anything. I told him that it almost seemed reasonable to stop eating for a couple weeks. He told me about another patient whose migraine attacks are triggered by eating—she wound up in inpatient treatment for eating disorders because she was so afraid to eat. He also said that she’d been in the week before me and was doing great. He couldn’t remember what drug she was on, but was going to look into it for me. I’m about to call the office now and will report if I get any information.

My chart notes from the headache specialist say, “I told her that it is important that she obviously continue to eat, and that if we find the right preventive regimen she will be able to eat without triggering an attack.” It summarizes much of the appointment. He also made it clear that he understands that my case requires straying way off the path of typical preventives. We’ve been off that path for a long time, now we’re on the verge of proceeding as if there were no path at all. He prescribed Celebrex and Adderall for preventives (more on that in a minute). And, if those don’t work, we’ll try monoamine oxidase inhibitors. MAOIs used to be used a lot for migraine preventive, but require strict adherence to a restricted diet to avoid a life-threatening reaction. Good thing that my ability to adhere to such a diet is so well-established. That drips with sarcasm, as it should, but I’m game if MAOIs are effective for me.

Adderall

What those of you with fatigue want to hear about is the Adderall. My headache specialist has several patients who have had a reduction in migraine attack frequency on stimulants. I tried Ritalin a few years ago. It wasn’t an effective preventive for me, but it gave me energy… for a week. Then it did nothing. I’ve been on the Adderall for just over three weeks now. Whether it’s working as a migraine preventive is still up for debate. What it is doing is giving me enough energy that I’m not glued to a horizontal surface all day every day. It’s not giving me crazy amounts of energy, more like returning me to my energy levels on non-migraine days in 2014. I’ve been terrified that it wouldn’t last, so I’ve been cramming in as much activity as possible.

Three weeks in, it feels a little more like the energy is here to stay, but three months is the critical point for me. I’ve had some drug side effects last that long, then disappear. I don’t think my energy is a drug side effect, but I still can’t believe that it will last. I have had slightly less energy in the last week than in the two previous weeks, but I’m holding out hope that’s diet-related.

I expect Adderall is probably only providing me with symptomatic relief. I’m OK with that, but am hopeful it will also work as a migraine preventive.

Why I’m Not Writing

For more than a year after I started taking DAO, all I wanted to do was write. I had a million other things I wanted/needed to attend to, but writing was my priority. Now it’s like pulling teeth. It doesn’t feel like I have cognitive dysfunction in day-to-day life, but trying to write tells me otherwise. It’s not enough to interfere with decisions or driving, or even show up in most conversations. But it’s enough that I can’t do my highest levels of mental activity—like reading medical journal articles and writing.

I’m using my physical energy to do the other thing I’ve daydreamed about: work on my house. I’m in the middle of painting the kitchen cabinets and have enlisted Hart’s help in moving furniture. I’m planning which cork flooring I want to replace the bedroom carpet with and choosing color schemes. I’m thinking about which plants will fill our yards. I don’t know how much we’ll be able to do right now (either ourselves or hiring someone), but at least there will be a plan in place that I can execute even if I’m laid up.

Migraine Status

I still have a migraine attack every time I eat, but I only have to take Amerge to stop it (not Midrin, too). The migraine doesn’t knock me out within five minutes of eating; sometimes I can wait an hour after eating before taking the triptan. And the triptan keeps me from feeling anything more than minor migraine symptoms before it does the trick. It seems ridiculous that this feels like progress, but I’ll take what I can get.

I’m still on the same diet—eating anything else results in a migraine that drugs don’t eliminate. Those migraine attacks aren’t too bad, but do sap my energy for the next day or two (even with the Adderall). Since I don’t believe the Adderall will last, I’m not willing to waste a single day. I’m also still eating only once a day. That’s so I only have one migraine a day and can keep an Amerge in reserve in case another trigger, like odors, set another attack in motion. Tolerex (the feeding tube formula) became a trigger this spring; I’m planning to try it again in the hope that a two-week reset will help reduce my food sensitivity.

The Adderall or Celebrex could be responsible for my reduced sensitivity, but stopping the probiotic might be, as well. I have no doubt that my GI symptoms were caused by the probiotic and there’s a good chance my renewed sensitivity to all food was, too. I stopped taking it in late August and my GI symptoms have been slowly resolving since then (they are almost completely gone). It would make sense that I have a gradual reduction in migraine frequency as well. It took three months of a ridiculously high dose of probiotics for the GI symptoms to start and six for the food sensitivity to return in full force. So I tell myself it took six months to get into this mess, it will take at least as long to get out of it.

I’m Not Gone for Good

I’m not sure how much posting I’ll be doing for a while, but will be back soon(ish). I hope to at least respond to comments in the next few weeks. I miss interacting with you all and I miss writing. I am, however, pretty happy with how my kitchen cabinets are coming along.

(I don’t have the brainpower to edit this post. I appreciate you muddling through the typos and hope it makes sense.)

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.

My diagnosis is: chronic migraine with and without aura.
My migraine attack frequency is: I have some level of head pain daily.
I was diagnosed in: 2002 with migraine, becoming chronic in 2008.
My comorbid conditions include: depression, anxiety, fibromyalgia.
I take one medications/supplements each day for prevention and four medications/supplements to treat an acute attack.
My first migraine attack was: I’m not sure. The more I learn about migraines, the more I believe that I’ve dealt with them since childhood.
My most disabling migraine symptoms are: pain, fatigue, cognitive difficulties, aphasia, sensory sensitivities (to light, sound, smell, taste, touch).
My strangest migraine symptoms are: olfactory hallucinations.
My biggest migraine triggers are: weather changes, lights (especially bright and/or flashing), odors / fragrance / smoke, foods / food additives (bananas, artificial sweeteners, nitrates / nitrites, MSG).
I know a migraine attack is coming on when: I have difficulty controlling body temperature and moods, my ears feel hot and achy, increasing visual disturbance, certain cravings, aphasia, inability to focus.
The most frustrating part about having a migraine attack is: being suddenly unable to function well, and not knowing when one will hit or how long it will last.
During a migraine attack, I worry most about: how well my migraine treatment will work, and how long I’m going to be out of commission.
When I think about migraine between attacks, I think: please don’t worsen today.
When I tell someone I have migraine, the response is usually: kind, but often indicative of the lack of public awareness of what migraine truly is.
When someone tells me they have migraine, I think: that migraine is so much more common than most people think. I also think about how I might be able to help them cope with migraine.
When I see commercials about migraine treatments, I think: how far we have to go (and how important it really is that we do so, every chance we get) to inform and raise awareness of migraine and the potentially debilitating affects this disease.
My best coping tools are: my faith, distraction (often involving Netflix).
I find comfort in: my husband, my dog, my house, my support system (family and friends, both in person and online).
I get angry when people say: “It’s just a headache,” which is sometimes followed by,”Just take a pill and keep going / move on” and/or “It can’t be that bad.”
I like it when people say: a sincere, “You’re in my thoughts and prayers.”
Something kind someone can do for me during a migraine attack is: allow me to escape to a dark, quiet place. Ask if I need anything (water, food, blanket, pillow, to be alone, etc) to help make me more comfortable. Be patient with me, as it can be difficult for me to think, speak, and move.
The best thing(s) a doctor has ever said to me about migraine is: “I won’t give up on you.”
The hardest thing to accept about having migraine is: that it is unpredictable.
Migraine has taught me: to recognize the strength that I DO have. It is teaching me to have more patience, and to trust God more.
The quotation, motto, mantra, or scripture that gets me through an attack is: “Be still, and know that I am God” (Psalm 46:10).
If I could go back to the early days of my diagnosis, I would tell myself: to prepare for things to be beyond difficult, but to never give up hope.
The people who support me most are: my husband, my support system (family and friends, both in person and online).
The thing I most wish people understood about migraine is: it’s a genetic neurological disease for which, there is currently NO cure.
Migraine and Headache Awareness Month is important to me because: I feel that we need to speak up/out to raise awareness, increase research, and help correct misinformation.
One more thing I’d like to say about life with migraine is: that it’s hard, but find yourself a support system and be your own best advocate to getting the care and treatment you need to live the best life possible.

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.

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.

My diagnosis is: Chronic Migraine

My migraine attack frequency is: 18 per month on average.

I was diagnosed with migraines in 1986 and chronic migraines in 2006

My comorbid conditions include: fibromyalgia

I take 2 medications/supplements each day for prevention and 2 medications/supplements to treat an acute attack. Currently.

My first migraine attack was: as an 8 year old girl.

My most disabling migraine symptoms are: the pain, the nausea, the fatigue and aphasia.

My strangest migraine symptoms are: my teeth will hurt and I can’t seem to focus my eyes on anything.

My biggest migraine triggers are: strong odors or tobacco smoke, bright lights, lack of sleep and loud noise.

I know a migraine attack is coming on when: I get super cranky.

The most frustrating part about having a migraine attack is: how it takes over my entire body, forcing me to put everything else on hold and there is very little I can do about it.

During a migraine attack, I worry most about: the pain. I know it will eventually let up but I don’t know if that will be a few hours, a few days, or a couple weeks. Still, part of me still worries that one day it will start and never end.

When I think about migraines between attacks, I think: I sure hope it doesn’t happen today.

When I tell someone I have migraines, the response is usually: sympathetic.

When someone tells me they have migraines, I think: Yes, so then you know. Then I start wondering about the details: how frequent, triggers, do they have a good doc, how do they treat, etc.

When I see commercials about migraine treatments, I think: they make it sound much easier and more dependable than it actually is.

My best coping tools are: distractions and laughter.

I find comfort in: my hubby, my pets, my home, my loved ones, my fellow migraineurs.

I get angry when people say: you just need to (fill in the blank with crazy random suggestions).

I like it when people say: just let me know if you need anything.

Something kind someone can do for me during a migraine attack is: be patient as I struggle to speak and bring me food.

The best thing(s) a doctor has said to me about migraine is: well it was what was done, or not done – I’ve never had a doctor tell me there is nothing more they could do for me.

The hardest thing to accept about having migraines is: how much it has limited what I can do.

Migraines have taught me: to be more aware of what my body is telling me.

The quotation, motto, mantra or scripture that gets me through an attack is: breathe, breathe, breathe.

If I could get back to the early days of my diagnosis, I would tell myself: to find a migraine specialist NOW.

The people who support me most are: my hubby and my mom.

The thing I wish most people understood about migraine is: that they are extremely complex AND chronic migraine is different than episodic migraine.

Migraine and Headache Awareness Month is important to me because: many people assume they know about migraines because it is so common. But there is a lot of misinformation out there along with a general lack of understanding of the complexity and severity of the disease. Knowledge is power.

One thing I’d like to say about life with migraine is: that it’s doable. It’s horrible but it’s doable.

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.

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.

1. My diagnosis is: migraine.
2. My migraine attack frequency is:1-5 times a week. They have been every day, and have had months without one.
3. I was diagnosed in: around 2004
4. My comorbid conditions include: nothing diagnosed. Have joint problems, suspected hernia, tender trigger points, muscle cramps, crushed nerve damage on left shin from a fall, acid reflux.
5. I take __0__ medications/supplements each day for prevention and __2 otc__ medications/supplements to treat an acute attack
6. My first migraine attack was: I was around 21
7. My most disabling migraine symptoms are: pain, nausea, light sensitivity, brain fog.
8. My strangest migraine symptoms are: burning muscles during an acid reflux migraine.
9. My biggest migraine triggers are: stress, smells, sounds, lights
10. I know a migraine attack is coming on when: I can’t concentrate or get anything done.
11. The most frustrating part about having a migraine attack is: loss of productivity. It’s like my life is leaking away and I can’t stop it.
12. During a migraine attack, I worry most about: my job and future
13. When I think about migraine between attacks, I think: if I eat good enough and do everything right maybe I won’t have another one.
14. When I tell someone I have migraine, the response is usually: Too much sympathy. I hate people feeling sorry for me. I just don’t want them to feel like they are being ignored.
15. When someone tells me they have migraine, I think: bummer! Hate those!
16. When I see commercials about migraine treatments, I think: I don’t watch tv, but can imagine I would be skeptical and hear the disclaimers louder than the promise.
17. My best coping tools are: ice/heat, sunglasses, ear plugs (can’t always use them), sleeping when can, isolation.
18. I find comfort in: my bed with all lights shut out.
19. I get angry when people say: n/a: I can’t afford anger.
20. I like it when people say: n/a
21. Something kind someone can do for me during a migraine attack is: leave me alone, and please no strong odors or loud noises.
22. The best thing(s) a doctor has ever said to me about migraine is: n/a. Don’t go to doctors much.
23. The hardest thing to accept about having migraine is: loss of my time
24. Migraine has taught me: anger has no positive contribution.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:I will get better. I will beat this.
26. If I could go back to the early days of my diagnosis, I would tell myself: look closely at the food manufacturing process.
27. The people who support me most are: my sup and my friend.
28. The thing I most wish people understood about migraine is: they can vary a lot between people and even time to time for the same person.
29. Migraine and Headache Awareness Month is important to me because: some people are becoming aware and more considerate about scents.
30. One more thing I’d like to say about life with migraine is: somehow, some way I will beat this!

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.

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.

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

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.

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.

1. My diagnosis is Migraine and Chronic Migraine.
2. My migraine attack frequency is 10-20 per month, depending on the season.
3. I was diagnosed in 1986.
4. My comorbid conditions include depression, anxiety, and fibromyalgia.
5. I take 0 medications/supplements each day for prevention and 4 medications/supplements to treat an acute attack. I will be trying Botox again for prevention.
6. My first migraine attack was in 1986 when I was eight years old.
7. My most disabling migraine symptoms are head pain, photophobia, phonophobia, neck pain, and occasionally nausea.
8. My strangest migraine symptoms are tinnitus and droopy eyelid.
9. My biggest migraine triggers are weather/environmental factors, alcohol, MSG, nitrites/nitrates, loud noises, bright lights, strong odors/heavy scents to name a few.
10. I know a migraine attack is coming on when I get tinnitus, neck pain, strange food cravings.
11. The most frustrating part about having a migraine attack is not having adequate pain relief.
12. During a migraine attack, I worry most about whether I should go to urgent care or the ER knowing that the relief would be very temporary and a rebound headache would be the result of it.
13. When I think about migraine between attacks, I imagine how nice it would be to never have another migraine again.
14. When I tell someone I have migraine, the response is usually to offer up suggestions, cures, and treatments which drives me insane.
15. When someone tells me they have migraine, I show compassion and understanding, listen to his or her story, and only offer advice if it is asked of me.
16. When I see commercials about migraine treatments, I think “Been there, done that”.
17. My best coping tools are rest, relaxation, ice packs, and mindfulness.
18. I find comfort in my family.
19. I get angry when people say to drink more water or exercise or to try whatever it is that “cured” their friend, cousin or co-worker who had migraines.
20. I like it when people say that they didn’t know how serious and debilitating migraine is and are grateful for educating them about it.
21. Something kind someone can do for me during a migraine attack is provide dinner for my kids so that I don’t have to worry about cooking or trying to order in and can just relax and sleep.
22. The best thing(s) a doctor has ever said to me about migraine is…. I’m still waiting on that.
23. The hardest thing to accept about having migraine is that it’s not going to go away.
24. Migraine has taught me patience, understanding, forgiveness, and compassion.
25. The quotation, motto, mantra, or scripture that gets me through an attack is, “I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much.” – Mother Teresa
26. If I could go back to the early days of my diagnosis, I would tell myself to not to be so angry. It’s not something you prefer to live with but you can find happiness within this life.
27. The people who support me most are my family, close friends and the migraine/chronic pain community.
28. The thing I most wish people understood about migraine is that is not a headache and is an extremely difficult disease to manage.
29. Migraine and Headache Awareness Month is important to me because it allows myself and others to educate others, shine a light on how little migraine research is funded, and chip away at the stigma around migraine and other headache disorders.
30. One more thing I’d like to say about life with migraine is although it is a life filled with pain, I have learned that the little things in life are what is important and to cherish and hold on to 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. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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.

June is National Migraine and Headache Awareness month. I am not very candid about my struggle with migraine outside the realm of my close friends and family, but because this illness is so raw and affecting to me, I am choosing to join in on the “30 Things” challenge. Thank you to The Daily Headache Blog and Kerrie to being a constant support to me, even if I am usually a quiet, anonymous reader. You are such a strong, inspiring person. I constantly relate to you in terms of migraines, so thank you for your words and for launching this project.

1. My diagnosis is Chronic and Menstrual/Hormonal Migraine.
2. My migraine attack frequency is very sporadic, 100% of the time occurring around the time of my ovulation, menstruation, or any time I have any change in hormonal balance. So several times per month, and otherwise, it’s unpredictable outside of my known triggers.
3. I was diagnosed in 2005, at the age of 12.
4. My comorbid conditions include Generalized Anxiety Disorder, Menorrhagia, and a general unknown hormone imbalance
5. I take 4 medications/supplements each day for prevention and up to 6 medications/supplements to treat an acute attack.
6. My first migraine attack was around age 10 or 11.
7. My most disabling migraine symptoms are first, the excruciating, throbbing pain in my skull focused at my temples; second, the nausea and vomiting to the point of passing out; and third, the fact that I become incoherent and cannot make sense of my surroundings. I become tongue-twisted, lethargic, and eventually sleeping for 12+ hours is the only remedy I can resort to.
8. My strangest migraine symptoms are my pain patterns. For example, the pain predictably switches from one side of my head to the other. Also, I used to experience migraine with aura when I was younger, but my visual auras no longer occur, making it much more difficult to predict an oncoming attack.
9. My biggest migraine triggers are hormone imbalances (whatever the cause may be), odors (cigarette smoke, some candles, vehicle exhaust, gas fumes, strong perfumes, the list goes on…), extreme stress/anxiety (most notably being in a situation where I am “stuck” with a crowd of people, also known as agoraphobia), overheated body temperature (such as a long workout or being outside on a hot day), and very loud noises. There are others, but surprisingly I have never seemed to pinpoint any food triggers.
10. I know a migraine attack is coming on when I experience excessive yawning, accompanied by smelling a faint scent of something burnt, like matchsticks. I consider this to be my “new aura,” and my neurologist refers to this sensation as parosmia, or basically the medical term for olfactory hallucinations.
11. The most frustrating part about having a migraine attack is generally just missing out on life, cancelling plans, calling out of work, or spending anywhere from hours to a few days in bed. Oh, and I can’t forget about the “pill limit” placed by insurance companies. That’s a real bugger.
12. During a migraine attack, I worry most about: “Do I have enough medicine to take?” “I wonder how long this is going to last?” “Do I have enough sick time to use if I need to miss work for this?”
13. When I think about migraine between attacks, I think: “Is today a migraine day?” “When can I fill my next prescription?”
14. When I tell someone I have migraine, the response is usually: “Oh, my –insert relative here– gets those.”
15. When someone tells me they have migraine, I think: SOUL. MATE. Haha, but really, it’s really nice to have someone to relate to. I enjoy the “migraine talk.”
16. When I see commercials about migraine treatments, I think: “Please tell me more about those life threatening side effects.”
17. My best coping tool is a metal clothing hanger. I’m actually not joking about that. Anyone with migraine can probably tell you that they have tried the most far-out, crazy home-remedies to get rid of pain…and this is mine. Other than my hanger trick, a cold compress, lavender-menthol rub, and a comfortable bed are nice too.
18. I find comfort in someone believing me and empathizing with me. I’m not asking for a miracle, but realize that migraine is more than “just a headache.” Realize that I am truly disabled, and I am not able to be 100% there during an attack. To those who understand these facts, I am comforted by your presence in my life and I thank you to the moon and back.
19. I get angry when people say: “It’s just a headache. Why don’t you take some aspirin?” Or the ever popular, “I wish I could stay home all day and do nothing like you do.” Oh and I couldn’t forget the old adage, “You’re too young to be feeling like that!”
20. I like it when people say: “Just take it easy, I hope you feel better soon.” “It’s okay that you missed –insert event here–”
21. Something kind someone can do for me during a migraine attack is honestly, just leave me alone until I’m feeling better. I can’t handle someone constantly checking in, even if they mean well. Those close to me understand that if I have been cooped up in bed for 10 hours, I’m still fine, I’m just getting the rest that my body requires. Peep your head in to make sure I’m still breathing, quietly bring me a glass of water, and leave. That’s the best protocol.
22. The best thing a doctor has ever said to me about migraine is: “We will find a medication that works for you, and I am always just a phone call away.” And we did find a great medication! However, it’s still important to realize that I still struggle with migraines many days out of the month—this medication helps me attack a migraine when it begins (referred to as an abortive drug).
23. The hardest thing to accept about having migraine is that so much of my life has been taken from me. Living with this illness has wasted a huge part of my time, energy, and patience. It has destroyed friendships and opportunities. It has depressed me, guilt-tripped me, and hurt me emotionally. Migraine lives on after the recovery, because around every corner, it’s continues to lurk; you don’t know when it may jump out.
24. Migraine has taught me: 1. that no one understands you more than yourself. 2. Through pain there is growth, you will learn about yourself more and more through each attack. 3. Migraine is NOT who you are, it does not define you, you are more than your pain. 4. Never let a migraine make you feel guilty, nor blame yourself for your illness—it is not your fault, regardless of what anyone says. 5. Hold close those few individuals who really “get” what migraine is; don’t let those people go, because those are the people you will need when the going gets tough and it seems there is NO ONE on this planet who knows what a migraine is.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it.” This is a Buddhist proverb that I have always identified with, because I feel that, even though migraine is such a terrible, disabling illness, it might just be a blessing in disguise. There is a balance to everything in life; we must find the good in the bad. I have profoundly become more tolerant because of my battle withmigraine migraine—and I feel that this is good. I can endure, I am steadfast, I have a thirst for life. I will never give up.
26. If I could go back to the early days of my diagnosis, I would tell myself: “Hang on, kid, it’s going to be a bumpy ride. But you’re going to get through it.”
27. The people who support me most are my mom and boyfriend, absolutely. Mom suffered migraines at my age, and never really overcame the disease until after pregnancy. My family and friends as a whole are mostly supportive and try their best to understand. It is difficult to understand what you have never experienced. My boyfriend has slowly, over the years, seen my illness in its gruesome details, I am thankful that he is there in my darkest hours.
28. The thing I most wish people understood about migraine is that migraine is truly debilitating. It’s not just a headache, and I am not “faking” my illness or my pain to get out of work, or an event, or a family gathering. Migraine has ruined many aspects of my life. Truthfully, I avoid the topic of migraine as much as I can. There is a stigma that surrounds migraine, which is why I’m joining the movement this month to bring awareness to migraines. People who live with this illness are humiliated, misunderstood, and pushed to by the side far too often. I’m writing this because I, too, am one of those misjudged, suffering wallflowers. But I have a voice, and it is important that I share it in hopes that others may identify and that I may educate.
29. Migraine and Headache Awareness Month is important to me because it raises a wonderful awareness to everyone else of something that I am intensely aware of every day of my life.
30. One more thing I’d like to say about life with migraine is: I don’t know what life is like without migraine; it affects every move I make. There is such a cause and effect that occurs while living with migraine, but ultimately, while the negative impact far outweighs the positive, I strive each day to find something good in my suffering, to see that little glimmer of good and be the best version of me that I can be, even through the pain. And it is my hope that other migraine or chronic pain sufferers can find that spark of good in life as well. Life is a beautiful blessing, and living in pain certainly blurs that beauty, but its still there. Sometimes its even clearer to us because we must fight to see it.

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.

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.

2. My migraine attack frequency is: It’s currently twice a day, but they are managed fairly well with abortive medication. They’ve been constant for most of my adult life and, until recently, didn’t respond well to abortive medication. The current state is much better than that, but it’s not as good as in 2014, when I was down to five a week that responded to meds.

3. I was diagnosed in: 2002, though it took several years for me to believe it was migraine because it looks so different from my husband’s migraine with aura.

4. My comorbid conditions include: Other than migraine and depression, I’m extraordinarily healthy.

5. I take 2 medications each day for prevention and 2-4 medications to treat an acute attack.

6. My first migraine attack was: I’m sure it came before then, but the earliest I can remember is when my fifth grade teacher left the door to the workroom open and the smell of rose-scented potpourri filled the classroom. I used to think the potpourri was the trigger, now I wonder if I was just more aware of the odor because I had a migraine. Either way, I still have an extreme aversion to anything rose-scented.

7. My most disabling migraine symptoms are: Fatigue and cognitive dysfunction. Pain would have been on the list until 18 months ago. These days, the pain is miniscule compared to the fatigue and cognitive dysfunction .

8. My strangest migraine symptoms are: earaches, tooth sensitivity, and feeling like something is in my eye.

9. My biggest migraine triggers are: eating and odors.

10. I know a migraine attack is coming on when: my feet get cold.

11. The most frustrating part about having a migraine attack is: not being able to think clearly.

12. During a migraine attack, I worry most about: when it will end. My response to this fluctuates depending on how severe the attack is and the pattern my attacks are currently following. For most of my life with chronic migraine, I worried a ton about what I wasn’t getting done during an attack.

13. When I think about migraine between attacks, I think: I’m so happy I don’t have one right now.

14. When I tell someone I have migraine, people assume: it’s an infrequent annoyance, not a life-changing condition.

15. When someone tells me they have migraine, I think: Do they actually have migraine or do they think a bad headache is a migraine? (Thinking this feels like a failure of of empathy—but I can identify and commiserate with the person who has migraine, I feel like I have to educate the person who thinks a bad headache is a migraine.)

16. When I see commercials about migraine treatments, I think: I’d like to find a treatment that gave me that much relief.

17. My best coping tools are: mindfulness. All my tools—like presence, deep breathing, not letting my mind churn on fears—come down to mindfulness.

18. I find comfort in: my home and my couch.

19. I get angry when people say: “it’s all in your head” or “think positive and you’ll feel better.”

20. I like when people say: “I have a friend/sister-in-law/coworker who has migraine. What they go through has shown me that migraine is not just a headache.”

21. Something kind a person can do for me during a migraine attack is: asking me what I need. Sometimes I need my hand held, other times I need to be left alone. Often, I need an errand run (usually to the pharmacy or grocery store).

22. The best thing a doctor has ever said to me about migraine is: “There are always more treatments we can try.”

23. The hardest thing to accept about having migraine is: it will be a constant presence in my life.

24. Migraine has taught me: that I can withstand anything.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: “When you’re going through hell, keep going” and “Never, never, never give up” — the first is from Winston Churchill, the second is an abbreviated form of something he said.

26. If I could go back to the early days of my diagnosis, I would tell myself: Never, ever dismiss your symptoms. Also, you’ll be amazed by why you can do.

27. The people who support me most are: I’m fortunate to have too many to list, including my husband, family, friends, readers, and other people I’ve met through the migraine/headache community.

28. The thing I most wish people understood about migraine is: it’s a neurological disorder with symptoms that can be felt throughout the body.

29. Migraine and Headache Awareness Month is important to me because: raising awareness is a necessary part of reducing the stigma of migraine and headache disorders. It’s also imperative to get better funding for research into the biology of and treatments for every headache disorder.

30. The one last thing I’d like to add is: having a headache disorder is hard work. As I said recently in a Migraine.com post, people tell us every day, in ways small and large, that our suffering doesn’t matter. It does matter, so very much. Keep searching for a doctor who understands what migraine is really like.

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.