30 Things About My Life with Migraine

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Ever wondered what life is like for me? Kerrie Smyres at The Daily Headache has created a list of questions for people to answer to share the similarities and differences in their stories with migraine and other headache disorders. This is my story.

1. My diagnosis is: Chronic migraine with aura, intractable migraine.
2. My migraine attack frequency is: Approximately 3x per week. This is down from the period of time in my life when I was having migraines every day.
3. I was diagnosed in: August 2004.
4. My co-morbid conditions include: Obsessive-Compulsive Disorder, Panic Attacks, Generalized Anxiety Disorder, Depression, Hypothyroidism, Vitamin D Deficiency.
5. I take 3 medications/supplements each day for prevention and anywhere from 2-10 medications/supplements to treat an acute attack. It should be noted that the ~10 medications alluded to in the previous sentence are not taken all at once. I have around 10 medications available to me for acute attacks. Usually, I take around 5 medications during the course of an acute attack.
6. My first migraine attack was: in August 2004. I was 19 years old and about to start my sophomore year in college at UMASS Amherst.
7. My most disabling migraine symptoms are: severe head and neck pain, nausea and vomiting, extreme sensitivity to light/sound/smell, and intense vertigo.
8. My strangest migraine symptoms are: Increased urination, phantom smells (smelling things that aren’t there), visual disturbances (flashing lights, colored lights, etc), numbness in my face/extremities. During one attack, I was reading a book to my preschool classroom and the words that were coming out of my mouth were not the same words that I thought I was saying. This is often referred to as “transient aphasia.”
9. My biggest migraine triggers are: Weather (particularly drastic changes in temperature or impending precipitation of any kind), heat, sunlight, fluorescent lights, certain foods (including but not limited to chocolate, aged cheeses, nitrates, and artificial sweeteners), strong scents/odors (including but not limited to floral scents, citrus scents, most perfumes/colognes, most cleaning products, and smoke from burnt food and/or cigarettes), crying and emotional distress.
10. I know a migraine attack is coming on when: I usually get visual disturbances before anything else. As soon as the flashing lights and colors appear, I know that a migraine is imminent. On the occasions that I don’t get that warning, pain in the left side of my forehead and neck coupled with nausea is a good indication that things are about to get started.
11. The most frustrating part about having a migraine attack is: I can’t seem to do anything about an attack once it has started and I have to shift my focus from whatever I am currently doing/about to do and go into survival mode. Not attending to the migraine attack is not an option. I never know if the medication will work or how long it will take to work or how many doses I will need. My life gets put on hold indefinitely until the attack is over.
12. During a migraine attack, I worry most about: How long will this attack last? Will the medication work? How long will it take to work? Do the people I’ve had to cancel on hate me now? Am I going to have these for the rest of my life? What if the pain never stops?
13. When I think about migraine between attacks, I think: When will the next migraine attack begin? Will I ever be able to have a reliable social life or career again? How many more people have I alienated with each new attack? How long will people be willing to put up with me?
14. When I tell someone I have migraine, the response is usually: At present, because of my advocacy work, most people already know that I battle migraine. They often say things like “I’ve had a migraine before but they’re not nearly as bad as yours.” Sometimes, they say “Your migraines wouldn’t be as bad if you didn’t spend all that time writing and talking and thinking about them.” During a migraine attack, some folks say “Again?!” or “It’s so hard to watch you suffer.” (I’ve got news for you…experiencing a migraine attack is pretty darned hard for me.) Occasionally, someone will say “What can I do for you?” or offer suggestions. The best thing for people to say is “I’m sorry you’re hurting. I hope you get some relief soon. Is there anything I can do to make you feel more comfortable? I’ll leave you alone but I love you and I am here for you.”
15. When someone tells me they have migraine, I think: I tell them that I battle migraine as well. Then, I tend to ask questions to find out whether they truly suffer from migraine or are using the term to describe a headache. I also try to suggest things that have helped me, such as seeing a certified migraine specialist or joining a support group.
16. When I see commercials about migraine treatments, I think: They are misleading. They often make it seem as though using particular medications or treatments are cures for migraine. Listen closely here: there is currently NO CURE for migraine. We only have hope of managing migraine right now. Also, the commercials fail to mention how difficult it is to get your insurance to pay for treatments such as Botox injections, which otherwise cost thousands of dollars every three months.
17. My best coping tools are: Medications. Ice packs. Heat packs. Caffeine. Ginger Ale. Peppermint. Eye mask. Migraine-specific sunglasses. Ear plugs. Air conditioning. Laying down in a dark room. Mindfulness. Meditation. Dialectical Behavior Therapy.
18. I find comfort in: Music (especially James Taylor and George Harrison and Simon & Garfunkel.) Reading. Watching/listening sitcoms (especially The Middle and Will & Grace) and silly movies (especially Sex and the City.) Hugs. Blogging. My support groups. Coloring. Prayer. My boyfriend Ian.
19. I get angry when people say: “It must be nice to be able to lay around all day and do whatever you like.” That is, in fact, the exact opposite of what I do. I was a preschool teacher for many years and it was never just a job to me; it was a lifestyle. I miss working with children every single solitary day. I had to actually grieve the loss of my job and my currently inability to work outside the home. I also get angry when people say things like “It’d be so nice to have just one day when you didn’t have a migraine and weren’t anxious or depressed.” It’s the tone of this one that matters, as though the person is saying it would be nice for them if they didn’t have to deal with all my “nonsense.” It is one of the most hurtful things a person can say to me…or anyone suffering from any kind of illness. Don’t be that person.
20. I like it when people say: I understand. Me too. You are trying/working so hard. Is there anything I can do to make you more comfortable? I hope you get some relief soon. I love you. I’ll leave you alone but I am here for you. Take care of yourself. It’s okay.
21. Something kind someone can do for me during a migraine attack is: Be very quiet. Don’t cook food that smells a lot and keep any other odors as far away from me as possible. Offer to get my meds or anything else I may need from the pharmacy. Get me a Dr. Pepper or another caffeinated beverage (bonus points if it’s a McDonald’s Coke!) Warn me if you’re going to turn on any lights or anything that lights up. Let me sleep. Give me a hug. Lay quietly with me and watch T.V. until my meds kick in.
22. The best thing(s) a doctor has ever said to me about migraine is: I won’t give up on you. There are still lots of things for us to try. You try harder than anyone I know. Migraines are (expletive) hard!
23. The hardest thing to accept about having migraine is: I may have to live with it for the rest of my life. I never know if I will wake up in pain or how much I will be able to do that day. It has also showed me that people aren’t always what they seem and I have lost people that were incredibly important to me because they “could not deal with my migraines.” That was heartbreaking.
24. Migraine has taught me: I am much stronger and more resilient than I thought possible. I can turn my pain into advocacy and help others. Never judge someone else’s struggle, even if you’ve gone through it yourself. Empathy, compassion, and humor are of utmost importance.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: There are three, actually!

a.) “This is uncomfortable but I can tolerate it and it won’t last forever.” ~Tom N-D

b. “It is never too late to be what you might have been.” ~George Eliot

c.) “Won’t you look down upon me Jesus/Won’t you help me make a stand/Just got to see me through another day/My body’s aching and my time is at hand/I won’t make it any other way…” ~James Taylor Fire and Rain
26. If I could go back to the early days of my diagnosis, I would tell myself: Things are going to get better. Hope for a cure and learn how to cope/manage. You are going to meet so many incredible people on this journey who will change your life. Give all possible treatments a chance…or at least think long and hard about each one before deciding it’s not for you. Apply for disability and/or assistance services NOW…it’s nothing to be ashamed of.
27. The people who support me most are: My parents. My boyfriend Ian. My mentor/former college professor John Stifler. My two best friends, Betsy and Megg. My fellow advocates and support group friends. My team of medical professionals is pretty cool, too.
28. The thing I most wish people understood about migraine is: Migraine is there even if you can’t see it. It is part of my life every single minute of every single day. There is no cure and I have no way of knowing whether I will battle it for the rest of my life. It makes me feel sad and angry and anxious and depressed and frustrated. A lot of times, I feel guilty or am scared that people will leave me behind because I can’t do certain things.
29. Migraine and Headache Awareness Month is important to me because: I need others to know that there are people out there like them. I need people to know that things can get better. I need doctors and researchers and insurance companies and the government to understand a patient perspective. I need family, friends, loved ones, and acquaintances to know how hard I am trying and how challenging it is to live with chronic migraine.
30. One more thing I’d like to say about life with migraine is: It is hard to remember this but some of the most amazing things that have happened in my life occurred after I began battling chronic migraine. My life is still important and worthwhile. I am trying my best and I will continue to advocate for the rest of my life, even if my migraines should unexpectedly and suddenly disappear. Lastly, please don’t ever discourage anyone from telling their story. It takes great courage to tell people what we go through and, if you’re hearing our story, we trust you to support us and not to hurt us. We don’t ask that you understand everything we say. We just ask that you try to.

Check out http://www.thedailyheadache.com/30things to share your own experience with Migraine, Cluster Headache, New Persistent Daily Headache, Chronic Daily Headache, Tension-Type Headache, or a Headache Disorder by June 29, 2015 for a chance to win a 30-minute coaching session with the wonderful and talented Kerrie Smyres OR your choice of any pair of indoor TheraSpecs. Be sure to check out The Daily Headache on Facebook and follow them on Twitter: @tdhblog

MIGRAINE WARRIOR OF THE WEEK #2: SARA RICHARDSON

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Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Welcome to “WARRIOR WEDNESDAY” and our second “Migraine Warrior of the Week!” As explained in a previous post, each Wednesday a different migraineur will be featured on this blog. Any pictures that are provided, along with their answers to a questionnaire will be posted here, with the hopes of providing alternate perspectives with regards to migraine and other headache disorders. These people battle migraines with determination and bravery and deserve to be celebrated and spotlighted for the way they live their lives despite chronic illness. Some “Warriors” will make mention of their personal efforts to raise migraine awareness: blogs, websites, Facebook pages/groups, books, presentations, etc. I encourage them to do this because I want everyone to have access to as much information as possible. I encourage you to take a moment to peruse whatever they are doing to help and to consider what you, personally, can start doing to make migraines visible and to stop the stigma associated with chronic invisible illness. 

*The content of the following interview does not necessarily represent the views and/or opinions of this blog or its creator. The content of the following interview only represents the views and opinions of the person who filled out and submitted the form. This content is not intended as medical advice and no person should ever start, stop, or change a treatment plan without the express permission and supervision of a trusted and appropriate medical professional. Some treatments that work for one person may not work for another and vice versa. This website encourages its readers to keep their minds open regarding possible treatments and to make sure they discuss all questions and concerns with a trusted and appropriate medical professional. No one pays to be a part of this project, nor do they receive compensation.*

MIGRAINE WARRIOR OF THE WEEK: SARA RICHARDSON

Tell us a little bit about yourself…share as much as you feel comfortable sharing.

What’s your name? Sara Richardson

When is your birthday? Dec. 19, 1971

How old are you? 42

Where do you live? Clear Lake, IA

What is your relationship status? Engaged

Do you have children? No.

At what age did you have your first migraine? 12.

At what age were you diagnosed? 15.

Are your migraines episodic or chronic?

Chronic Migraines, daily headaches, silent migraines, status migraines.

Describe a typical migraine for you. What does it look like/feel like? What symptoms do you experience? What kinds of activities are limited/impossible for you during a migraine attack? 

When I have one of my bad ones coming on, I have pain in the back of my head (at the base of my neck) and then I also begin to get confused.  The worst one that I have ever had, I didn’t know who my mother was.  I also lose some mobility – I get kind of dizzy and need to lay down.  Since I don’t know what I should be doing when I have these, I pretty much can’t do anything – except lie in bed and try to get some rest.

People tend to associate migraines with pain in the head. Other than head pain, what would you say is the number one symptom of your migraines that is the most debilitating?  Confusion.

What are your migraine triggers? 

Nicotine, caffeine, sulfites, nitrates, chocolate, aspartame, cheddar cheese, pork, sometimes dairy, sometimes citrus, heavy cloying smells, sometimes the sun (too bright), fluorescent lighting, weather changes, sometimes yeast……it goes on and on.

What treatments have you tried to manage/control/cure your migraines? Which have been the most and least effective? (Include medications, Botox, trigger point injections, herbs and supplements, surgeries, acupuncture, massage, cranial-sacral therapy, Reiki, physical therapy, exercise and dietary adjustments, and anything else you have tried.)

Medicines, change in diet, surgery (I have a PFO in my heart to block a hole), biofeedback, chiropractor, physical therapy, all sorts of different doctors, and an occipital nerve block.

Most effective – medicines and diet

Least effective – biofeedback and occipital nerve block

How have migraines changed your life and the life of your family and loved ones? 

No one knows if they can count on me to be there for anything because I never know how I am going to be feeling on any day, and if I am there – they also know that I may have to leave or lie down at any point in time.

What emotions do you associate with your migraines?  

Sadness, tiredness, depression, frustration.     

What is the worst thing a person can say or do during a migraine attack? 

Oh, you can’t be in that much pain – just keep going and it will go away.  (My mother uses this one a lot)

Give non-migraine patients some tips on how to be helpful, both during an attack and in everyday life, with regard to migraines, chronic pain, and invisible illness.   

During an attack – help me to get home, and to take my medicine.  

In everyday life – ask if you can come over because you know that they may not be able to get out of the house or tell them if you are going somewhere (i.e. – grocery store) and ask if you can pick anything up for the migraineur.

If you could convey one thing to the general population about migraines, what would it be?  

IT IS NOT JUST A HEADACHE!!!

Do you participate in any advocacy work for migraines? Is there a link (or links) that you would like to share, such as for a blog, Facebook page/group, or website? 

I have some support groups online that are for people with either/both migraine conditions or chronic pain on Facebook – Chronic Migraine Awareness (there is both an open forum – for the public, and a closed one (for people with chronic migraines to vent safely) and Purpose in the Pain Pen Pals – which is a pen pal group for people that have chronic pain to communicate with others through messages and the mail.

Do you battle any other diseases/illnesses/disorders other than migraines? 

Not really 

Is there anything else you would like to share? 

Migraines are very common, however chronic migraine is worse than just about anything.  When someone who has chronic migraine has one of their attacks, they don’t know how long that will last, how bad it will be, or how many people we will disappoint.  When we have a migraine attack, we feel very alone and can get really depressed.  Also, one of the worst things to say to someone with chronic migraine is “Oh, when I get one I take some over-the-counter medicine and it is fine after about an hour.  Have you tried that?”  Of course we have tried that!  That’s one of the very first things that we have tried.  Now, I have medicine that most people who have episodic migraines have to go to the hospital to get (when theirs get too bad for over-the-counter medicines to help) that I give to myself.   

The medicines that I have are injections and they can hurt badly when I have to give myself a shot.  So I end up trying not to take my medicine, because even though I know that it will make me feel better (most of the time) it will hurt almost as much as my head already does.  Or, it may NOT work, and that means that I will have to go to the E.R. Luckily for me though, I go to the E.R. that is affiliated with my G.P. Dr. and have a plan of action of what needs to be done when I have to go there – AND THEY ACTUALLY FOLLOW THAT PLAN!!  There are a lot of migraine patients that when they have to go to the E.R. because their medicines aren’t working for them, they get stuck there for hours with no help, they aren’t believed that they are in as much pain as they really are, they are told that the medicine that the patient says will work – the doctors won’t give them – so the patient ends up getting some medicine and maybe an IV of fluids and then are sent home.  What would you do if you were asked by a doctor, “What is the medication that has worked for you in the past?”  And when you tell them the medicine that worked……your answer given is this, “Oh.  We won’t give you that!  We don’t give that to migraine patients.  You are just a drug seeker, so I won’t give you that.”  And this is what happens to you – even if you do have a plan of action from your doctor (on his/her stationary) that states for you to follow this plan. 

Think about it…………………………STOP THE STIGMA!!!   WE ARE NOT DRUG SEEKERS, WE JUST WANT THE PAIN TO GO AWAY!!!!

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Thanks, Sara! Keep your eyes on this blog daily for new content and every Wednesday to catch the newest “Migraine Warrior of the Week!”