My boyfriend and I started getting “Save The Date” cards for upcoming spring and summer weddings. My immediate thought process goes something like this:
- “Oh how awesome for [Insert Friend Here]!”
- “AHH, is it possible for me to get through their special day without a migraine?”
Weddings have generally been a source of M Words for me, and it’s not really surprising is it? Weddings are chock full of migraine triggers!
- Incense at the church (smells)
- Church being too hot/cold (Topamax)
- Outdoor ceremony/reception (barometric pressure/weather)
- Drinks at cocktail hour (alcohol)
- Lack of migraine-friendly foods (food intolerances)
- Loud music (noise)
- Not enough water during the day (thirst)
- Coffee at reception (caffeine)
That’s just a list I came up with in about 60 seconds, so I’m sure I’m missing major ones. It’s obviously not our day as M Worders, it’s about the bride and groom. But you have to take care of your own health first before you can be of use to anyone, including being a good friend to the bride and groom. So what can we do?
At the Ceremony:
- Consider sitting toward the back so you can step out for some fresh air (or step into air conditioning) if necessary. I have passed out in a church before from being too overheated (thanks Topamax) so I don’t believe that subtly sneaking out for a minute for the sake of your health is rude.
- Take water. I take a waterbottle with me everywhere. EVERYWHERE. To work, the mall, out to dinner, and yes even to church. I certainly don’t mean to be disrespectful, but it’s an absolute necessity to prevent M Words. (Thirst = trigger)
At Cocktail Hour:
- Re-consider your drink selection. I have stopped drinking alcohol completely. Nearly each sip of alcohol I’ve taken in the past few years has ultimately led to a migraine. This is not worth it for me, but I choose to put my health first. I also do not drink any soda (Caffeine/Aspartame = Trigger). At a cocktail hour, I’d typically just ask for water.
- Those trays of fried goodies and bacon-wrapped deliciousness look appealing, but I head straight to the fresh veggie and fruit stand (if there is one). You might even want to pack a little snack to take with you. Waiting too long to eat between meals is a trigger.
At the Reception:
- If the music is too loud (noise = trigger), it’s okay to step out. You have to put your health first - keep telling yourself that!
- Politely decline the after dinner coffee (Caffeine = Trigger). Water is your friend. This is the time when I might have to take an abortive migraine pill, such as sumatriptan/Imitrex. Don’t forget to pack your migraine meds (along with your water bottle and snacks - and the wedding gift!)
Luckily, my boyfriend is a pro at the role of Date Of M Worder. He goes outside with me if the music is too loud, and he’ll switch plates with me if I get something I can’t eat. I am so lucky - it would be very difficult for me to get through a wedding without him at this point!
Do you have any upcoming weddings? Do you have any tips to share on how to survive (and enjoy) weddings as a migraineur?
As m worders, we often feel like bystanders, watching our lives pass us by, helpless as doctors and prescriptions control our bodies, naysayers tell us our pain isn’t real, and employers and co-workers fail to understand the pain we live with every single day.
This quote helps me build and maintain hope when my life feels completely dominated by chronic migraine disease. Taking back some of that control is key to maintaining hope as a migraineur and living a happy life. Let’s start now: how are we spending our healthy, non-migraine time?
Happiness research predicts that making time for a passion and treating it as a real priority instead of as an “extra” to be fitted in at a free moment (which many people practically never have) will bring a tremendous happiness boost.
I used to spend my healthy, non-migraine time running to networking events and working 60 hours a week in a job I hated. Now, my hobbies include yoga, photography, and classic novels. For the first time since my migraine diagnosis,
I feel hopeful for the future. I know, realistically, that it will not be migraine free, but I’m okay with that.
My migraines do NOT control me anymore.What steps can you take to get control (and hope) back in your life?
- Me to my boyfriend on Tuesday night, in the midst of a crying spell.
On Tuesday, I started a new job and had to leave because of a migraine. I got home to take an injection and the manager immediately asked if I could go back. I explained that I needed to take care of my health otherwise I might need to go to the Emergency Room.
I ended up having to quit that job before I could even start because of migraines. Make that two jobs I’ve quit (and one career) because of my disease. The pain is disabling, but to compile a total lack of empathy and understanding on top of that? Nobody should have to experience that. Frankly, I’m tired of having to experience it all the time, and that’s why I want to be a voice for all of us.
Can anyone relate to this experience??
Today is Rare Disease Day!!
Rare Disease Day is an international, annual, awareness-raising event for rare diseases. The goals are to obtain a correct diagnosis, improve scientific knowledge, and mitigate social consequences and isolation.
What is it?
Here is a link to a list of rare diseases.
You may be familiar with some of these including:
- Addison’s Disease
- Crohn Disease
- Cystic Fibrosis
- Hodgkin Disease
- Tourette Syndrome
How do I know if I have it?
These diseases are all very different. They are unique and considered “rare” because of the following:
- They affect fewer than 200,000 Americans at any given time (fewer than 1 in 2000 Europeans)
- Relatively common symptoms can hide underlying rare diseases - often leading to misdiagnosis and delays in treatment
- Quality of life is affected by the lack/loss of autonomy due to chronic, progressive, degenerative, and frequently life-threatening aspects of the disease
Why are you writing about this on a migraine blog?
The theme of this year’s Rare Disease Day is “solidarity.” Although migraine is not a rare disease, migraineurs share many of the same concerns that our friends with rare disease do, especially regarding concern for diagnosis and social isolation.
Fun Fact about something so evil:
This year’s Rare Disease Day will be celebrated in over 60 countries - click on a region to check out all the different events planned!
Did you know migraineurs had a bill of rights too? The great people at ACHE put this together. They’re on Twitter too.
- I have a right to be taken seriously by my physician when I go for treatment of my headaches.
- I have a right to a complete and thorough medical examination, including a medical history and complete neurological evaluation.
- I have a right to appropriate diagnostic testing, including neuro-diagnostics, CT scans and MRI scans, if necessary, when my headache is first evaluated, and when the headache pattern or severity changes.
- I have the right to be referred to a specialist - for example, a neurologist, a headache specialist, or a headache clinic if my headaches do not respond to my primary physician’s treatment, or if my primary physician feels a specialist’s care is needed.
- I have the right to receive specific headache therapy, if needed, instead of non-prescription drugs, narcotics, or combination analgesics that may increase the problem.
- I have the right to ask for a comprehensive, written treatment plan that will tell me exactly how to use my preventative medications and non-drug preventives and, complete instructions on what to do when a headache occurs.
- I have the right to return for additional help whenever my treatment plan seems to be inadequate to control my headache.
- I have the right to be treated courteously and responsibly in the emergency room, if a severe headache fails to respond to my usual treatment plan.
- I have the right to expect my insurance company to recognize migraine as a legitimate medical illness as any other illness such as diabetes, arthritis, etc.
- I have the right to expect those around me - family, friends, co-workers, and others who come in contact with me to make an effort to understand my illness and to cooperate with me in my efforts to live a rich, full life.
Do any of these hit home? Which is your favorite?
Did you know that migraines even had 4 stages? It might be able to help you figure out when yours are coming!
- Prodome: There’s actually a stage BEFORE the aura that lets you know you’re about to have a migraine! You might notice that you can’t really think cl
early. Your friends might notice that you’re easily irritable or confused. Some people get this 24 hours before the pain hits.
- Aura: Only 20% of m worders get an aura. It doesn’t have to be visual, it can be a strange smell or a language disturbance.
- Pain: Generally a throbbing pain on one side of the head lasting from 4 to 72 hours. Accompanied by nausea, vomiting, increased sensitivity to light and sound. Headache is just one symptom of migraine.
- Postdrome: After an m word, people generally experience deep fatigue for up to 24 hours depending on the severity. Some people may be irritable or have difficulty concentrating. It lives up to its nickname as “the migraine hangover.”
One more time, in picture format:
“
Maybe what I do gives me a migraine, it doesn’t give you a migraine. So you’re just luckier than me is all you are.
But implicit in the argument is always that you’re tougher than me, that you’re smarter than me, that you’re saner than me.
But actually, from my point of view as a migraineur, I think that I’m tougher and I’m smarter than that person who doesn’t have to worry about that kind of stuff, because I’ve got to watch so many things that I’ve got to do.
”
- Andrew Levy, writer
This is from the Facebook wall of one of my VERY favorite groups, The Migraine Project. I previously wrote about them here. If you don’t look at any other sites on the Internet today, you have to check them out (they are making a MOVIE about migraines!).
I’m coming off of back to back migraines. The trigger I can name as culprit for these bad boys is without question, stress. But what’s the real deal with stress and migraines? Can STRESS really cause something like this? Wouldn’t that mean “it’s all in our head,” like the naysayers tell us? Let’s take a look.
This article by Teri Robert challenged me to reconsider the role stress plays in my migraines. When Ms. Robert attributed her migraines to stress, she took a look at what was really going on and noticed the following occuring:
This makes sense, since we know migraines are a neurological disease and not a psychological disorder. I would add to this list:
- not exercising enough/over-exerting through exercise
- crunching up neck, jaw, and forehead, causing a tension type headache
Stress management techniques are still VERY important for us M Worders. As we practice these techniques, like yoga or deep breathing, we might find ourselves sleeping better or relaxing our shoulders, for example.
Since we have all promised to take ownership of our health this season (and we’ve all promised that right??), I would encourage all readers, including myself, to continue/start keeping M Word Diaries. When you’re listing triggers and you’re about to write “stress,” take a look at the list above. Is it really stress or something you do because you are stressed causing the migraine?
For more info:
- http://www.migraines.org/myth/mythreal.htm
- http://migraine.com/blog/your-worst-migraine-triggers-stress-really/
- http://migraine.com/blog/expert-featured-article/expert-review-stress-and-migraines/
- http://stress.about.com/od/tensiontamers/Tension_Tamers_How_To_Feel_Better_Right_Now.htm
This week, I’ve learned a lot about fibromyalgia.
This image from Ahaze outlines many of the details.
What is it? Fibromyalgia is a medical, diagnosable disorder that affects 2-4% of the population. Major symptoms include:
- Chronic, widespread pain
- Fatigue
- Heightened pain in response to pressure
- Tension or migraine headaches
- Tingling of the skin
- Prolonged muscle spasms
- Difficulty swallowing
- Weakness in the limbs
- Chronic sleep dysfunction
- Impaired cognitive function (brain fog, problems with long or short term memory, diminished attention span)
How do I know if I have it? Fibromyalgia brains differ structurally & behaviorally from healthy brains. To be diagnosed, you must:
Why are you talking about fibromyalgia on a migraine blog? Chronic migraine sufferers experience debilitating head pain, nausea, stomach cramps, migraine aura, & triggers, & have a strong chance of receiving a fibromyalgia diagnosis. Similarly, fibromyalgia sufferers may experience migraine attacks. The illnesses do not cause each other; rather, they sometimes appear together in a patient’s medical history.
Fun Fact About Something So Evil: Sinead O’Connor retired from music because of her pain from fibromyalgia.
I’d love to hear about your experiences with fibromyalgia as well.
For more info:
Read more
