Migraine Simulation

I have mixed feelings about Excedrin. I’m always a little skeptical of migraine products – their use, their effectiveness, their cost. Excedrin can be a dangerous thing if misused. With the combination of medicine – 250 mg Acetaminophen, 250 mg of Aspirin and 65 mg of Caffeine, people can often take too much of this medicine. More than 2 pills in a 24 hour period is overdosing which will lead to rebound headaches. Rebound headaches often cause the sufferer to take more headache medicine creating a vicious cycle where no relief can be found without withdraw. This isn’t the company’s fault – it’s the consumers misuse.

A couple of Excedrin’s products make me raise a skeptical eye brow. They make numerous headache/migraine products. The mild headache commercial makes me cringe. My “everyday” headache is not something that Excedrin can treat. This woman’s mild headache could be banished with the loss of her two annoying kids. The “Mild” formula is 325 mg of Acetaminophen with 65 mg of Caffeine.

The “Extra Strength” formula is the exact same as the “Migraine” formula. Both are 250 mg of Acetaminophen, 250 of Aspirin, and 65 mg of Caffeine. There is no difference between the two but are two different products? Okay. This annoys me. This adds to the stigma. They’ve re-branded something for bad headaches for migraines. A migraine isn’t a extra strength headache. There is nothing that annoys me more than the stigma that a migraine is a bad headache and something OTC can cure it. If Jordan Sparks has migraines, Excedrin Migraine isn’t going to cure it without some prescription help.

BUT! Excedrin has done something pretty cool.

Using Oculus Rift,  Excredin has created a virtual migraine. Well, the aura. They focus on the aura. It’s impossible to recreate the pain, most of the sensitivities, and nausea. The aura is really a vital part of a migraine for a lot of people. The aura is just the storm on the horizon but they can be destructive. The loss of vision, and impaired vision can wreak havoc on peoples lives, and that’s before all the pain. They are able to recreate the disorienting feeling of a migraine aura.

The people in the video, two gentlemen, can’t last with the simulation.

It’s something. It’s a start.

I hope that this experiment can open a discussion on migraine symptoms – that it’s not just a headache.

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MHAM Absence

I am overwhelmed with grief. Shocked into numbness. While on vacation, my beautiful rescue tabby Norah passed away suddenly from cancer. I thought I was unstoppable – after migraines. Nothing could stop me but this has – in my tracks. I am at a lost with everything. I won’t be finishing MHAM despite how important it is. I can’t write. I will continue blogging after the end of June.

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MHAM: Days 19 and 20

Day 19: Kelly Clarkson’s Stronger

What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone

I really like those lyrics. For the longest time I felt so isolated with my pain. I didn’t feel stronger for a long time after the attacks but now I do. Before when I was isolated, I had a hard time feeling better after the attacks, I just felt weak and defeated. Now I’m stronger, more hopeful. Just because I’m alone doesn’t mean I’m lonely, I have a ton of friends and supporters who will help me through the storm.

Day 20: Role Model

Everyone I’ve met with headaches and migraines are a huge inspiration to me. They all continue to blog through the pain Raising awareness rather than suffering alone. They are beacons of hope in the dark. They keep the light on for other wayward migrainuers, welcoming anyone with warm arms and advice. The migraine community continues to inspire me and bring me hope every day. When I’m feeling down, I know all I have to do is shoot someone a message and I’ll receive out pouring support.

I love you all and I hope you all know what a difference you’ve all made in my life just by having a little blog.

MHAM Days 17 and 18

Day 17: Hope rises like a phoenix from the ashes of shattered dreams.

After the migraine breaks, I don’t feel like a phoenix. I feel more like an old ship that’s just come out of a hurricaine, drifting towards port. I feel tired, worn down. I feel creaky. I don’t feel like I’ve been reborn until after I’ve eaten and slept. That’s when I feel the best. I feel unstoppable, and fearless. I just survived my worst and now I’m ready to be my best.

Day 18: Share what your doctor has said to you that give you hope.

It’s not one specific thing but my doctors have had an air of confidence to them. It’s not a cocky confidence but one that promises me their best in getting me to the best I can be – which gives me hope.

MHAM 16: Color

What color do you envision when you think of hope?

Hope is the color of the blue sky on the first warm day of Spring. Where the sun is shining down on you, warming your skin. There are birds tweeting. The grass is soft under foot. You can smell the warmth, the flowers beginning to bloom. The softest breeze carrying the smells to you, fluffing your hair. Everything is serene and peaceful. Open your eyes and look at the sky, all blue but different hues, darker near the horizon, lightest near the clouds, and the sun. You’re reminded of the whole wide world looking up at the same sky. That is the color of hope.

MHAM Day 14: Hope lies in dreams, in imagination and in courage

Day 14: “Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams a reality.” Jonas Salk

This comes from a man who found a vaccine for polio, a previously incurable, devastating disease. I’m not sure how much you can compare the two, polio and migraines but the message of hope for a cure rings true for both. Polio is a virus, migraines are something else entirely. Such little research has been done about migraines. We are not looking for a cure for migraines, but rather management.

As far as the quote goes, we, migrainuers, can only dream of a cure. We dream of a life without debilitating pain. We dream of a normal life. We dream of spending more time with our families and less in the darkened, silent bedrooms, with our treatment options. I dream of a life where I do not have to take medicine where I fear a missed dose. I dream of a life where I am 100% me not not divided between who I am and who I am with a migraine. My reality is that I’m never going to get that time back and my reality is that I’m going to lose time in the future. My reality is the only escape from the pain is sleep where I dream of my normal life still being invaded by headaches and migraines. Taken quite literally, my only hope of a normal life is in the world my unconscious mind creates when I sleep. My greatest fears should not be a missed dose of medicine, or not having enough medicine. It should not be worrying about making up classes, praying for the kindness and forgiveness of others, strangers, professors, for a condition I have no control over. I should not be worrying so much about my future as a functional human being at 21. This worrying started at 13. My greatest fear should be heights or spiders, not my own body. I should be fantasizing about my future career, spouse, and children, not headache care. I should be out on the weekends, having fun – not recovering from a weeks worth of headaches. Not dreading the next one.

Maybe our suffering isn’t enough. We are such a minority. We are not dying because of migraines, not matter how much we blame them. They call it depression. We scream into the void for help only to be blocked out by the bigger groups. We are the invisible patients, we are the lost patients. We are the ones suffering from such a misunderstood and under-researched disease that instead of being put under the microscope we are thrown out the door. We have no medicine for our illness. We take depression medicine because it’s really good for headaches too. Or blood pressure medicine because it helped someone’s headaches in the clinic trails. Or something else because it turns out it helps with migraines too. Not because it’s for migraines. Our medicine, cymbalta, topamax, botox, zonegran, are all flukes. Our medicine for the treatment of our disease is just a by product. Someone came up with these medicines to treat a more in demand, more profitable, disease – blood pressure, depression, seizures and we are given it as an after thought. We suffer from an illness, a debilitating, life threatening, disease unlike no other where there is not a single medicine made just for us, for our treatment. Because we alone are not enough. Our suffering is not enough to them.

I have suffered every day. I’ve been to numerous doctors. I dream of a life without I don’t wake up with a headache. A day where I do not want to immediately go back to sleep. Where I wouldn’t dread the headache to come, that I know will come. Where I don’t have to fear the big one because I have a preventative, I have an emergency medicine that makes me feel better, not worse. Where I didn’t have to wish I could fade into the void, where my headaches couldn’t find me. Where I’m free.

I still fight, I still go to the doctor’s appointments. I’m still trying new medicine. I don’t know if that’s courageous or stupid. It has to be courageous because without it being courageous, I’m nothing but a migraine.

MHAM Days 11, 12 and 13

Sorry for the two missed days – OITNB took over my life for the last three  days.

Day 11: What do you do or say to help other have hope?

When I encounter someone with a headache I try to be as helpful as possible. When one of my students in my field experience was experiencing a headache, I asked her if she wanted to go to the nurse, let her keep her head down and tried to keep noise levels down in the classroom. When one of my friends, Gwen, experienced a migraine in class, I took her back to her apartment. I lent her my sunglasses. I offered her medicine but was short on an imitrex. I just try to be the person that I would want during an episode. (despite that,  I haven’t encountered anyone too nice during an attack but I am pretty mean during one)

I hope this blog brings others hope. This is just one act I can do, reaching out to others to help them understand that they are not alone, not crazy and are heard. I felt crazy for so long, I just hope no one else ever feels like that.

Day 12: Quote: “The birds of hope are everywhere, listen to them sing.”

This quote makes me think of all my well wishers. All my friends tell me to feel better every time, despite some of my nastier replies in the past. They celebrate with me when I am feeling better. They ask about doctor’s before and after visits. They are all around me, wishing me well and celebrating every little victory along with me.

Day 13: What in nature brings you hope?

Definitely stargazing. The night is calming, still. There are millions of stars in the night sky. The quiet, isolation is calming. I like to star gaze with friends around a bonfire. The whole experience brings me hope.It makes me feel like I’ll be okay despite the headaches.