"Two years ago, Laura Still of Hebron suffered a headache so severe that doctors admitted her to a hospital. During her two-week stay, doctors ruled out cancer and an aneurysm as possible causes but, short of a definitive diagnosis, suggested that the pain might be all in her head..."
Meet my friend Mr Migraine. Or maybe it's Ms. I'm never sure. Anyway, he or she is sitting right at my shoulder as I write this, helping me misspell every word, and making my head feel more square-shaped than round. Actually that's probably the magic pill doing that, but more about that later. The very fact I'm writing this is a success, it means I've caught him or her before he or she got away from me, and ran rampant inside my brain for the next few hours. Because then I wouldn't be typing. Or sitting up. Or thinking. Or moving. Or doing anything other than trying to make the pain go away.
Good Sunday morning to my Migraine and Headache family! It's inevitable that some of you have a Migraine or Headache today, but I hope all of you are doing as well as possible.
Living with Migraine disease and other Headache disorders isn't easy. We know that, and I certainly don't have to tell you that. It's not just the physical part that's an upstream battle either, so it's important that we sustain our entire being and include our intellectual, emotional, and spiritual selves as well. Sometimes, I think that's even more challenging than the physical.
Since many of us have been struggling with the impact of current events as well as our health issues, it seems reasonable to think about our intellectual, emotional, and spiritual selves today and how to sustain those sides of ourselves.
Over this past week, I had a couple of discussions with Migraineurs on the topic of addressing our mental health needs. One young friend of mine shared that she's had the help of a therapist with issues other than Migraine since she was a teenager, before her Migraines became chronic. She also shared that it was really helpful for her that she had the support of her therapist when her Migraines did become chronic. Not all of us need to see a therapist on a regular basis, but if it would be helpful, we should avail ourselves of their services. Some people are hesitant for whatever reasons, including the stigma attached to mental health issues. We need to realize that there is absolutely no shame and nothing to be embarrassed about. Mental health conditions are based in biology, just as other diseases.
I've been open about saying that I cope with major depressive disorder along with Migraine and some other health issues. Over the years, I've had a few sessions with psychologists as well as a psychiatrist. Some Migraine and Headache clinics require a mental health assessment for their patients. Given that major depressive disorder is so common among Migraineurs, I think this is an excellent idea. The assessment serves two main purposes:
To evaluate patients for major depressive disorder and other conditions, and ensure that if we need treatment, we're getting appropriate and adequate treatment.
To evaluate our coping skills for living with our headache disorder(s).
Some of us benefit from regular visits with a therapist. Some of use don't necessarily need to go that route. Still, we have to meet all of our needs. Here are some of the methods I employ to meet my intellectual, emotional and spiritual needs:
Learning. There's always more to learn about Migraine. Learning allows me to understand what my Migraine specialist is talking about and reduces the feeling that my Migraines are beyond anything I can do to manage them.
Meditation, prayer. My days usually begin with coffee, prayer, meditation, and a bit of Bible reading. This allows me to "center" myself for the day, and I find myself to be more productive and better able to concentrate when I start my day this way.
Simple quite. Even if we're in a silent room, our minds aren't necessarily quiet. This is move important today than ever before. Because of television and radio news, the Internet, and other sources of information, we can easily become overwhelmed — not only with conflicting information, but also with tension, fear, and other negative emotions from news, harsh political campaigns and more. This makes it more important than ever to just "be." We need down time away from all of the "noise." I sometimes just sit, close my eyes, and focus on breathing deeply. Other times, I drive to the river so I can just sit and watch it flow by. We all have to find what works for us.
Do YOU have methods for sustaining yourself — physically, intellectually, emotionally, and spiritually — that you'd like to share? If so, please leave a comment below. Thanks!
Happy Sunday to my Migraine family! Some of you had a horribly difficult week. Here's hoping that next week is kind to everyone!
Today finds me feeling more than a bit melancholy. Some of my friends and I have recently discussed feeling this way, attributing it mostly to current events around the world - events such as terror attacks, war, the plight of refugees fleeing from war, the heart-breaking photos of innocent children in war zones, etc. We've also decided that the tenor, name-calling, and all the rest of the BS coming out of the Presidential campaign doesn't help matters any. For weeks now, we've talked with each other and concentrated on Migraine and Headache education education and advocacy efforts - mainly because we can't think of much to do about the issues that are bringing us down, but we cando something about education and advocacy.
Friday evening, I shared a link on my Facebook page about a woman with Migraine who uses DHE injections to treat her Migraine attacks. The story was about how dramatically the cost of DHE has risen over the years that's she's been using it. When she started using it in the 1980's it cost $180 for 10 doses. Her most recent prescription cost $14,729.99 for 10 doses. That seemed high to me, but when I priced it here, I found that 10 doses would cost $10,700.00. So, even though I found it at a lower cost, it's still prohibitively expensive, especially when you consider that it could take more than one dose to stop a Migraine attack.
One of the reasons this link caught my attention and one of the reasons I shared it on my Facebook page is that I know people who are having a terrible time affording the DHE their doctors have prescribed for them. Both as a Migraineur AND as an advocate, I think this issue needs attention - LOTS of attention.
I honestly didn't even look to see what site the link led to. That is, I didn't look until someone commented on it on my Facebook page saying, "Please keep political endorsements out of your posts. Surely there was another way to get this information." When I first saw the comment, I was stunned. Then I got angry. It's a Facebook page. It's MY Facebook page. What on earth?
Yesterday afternoon, I received a private Facebook message from the woman who posted that comment. She apologized, saying that she had a Migraine when she made the comment. I thanked her on Facebook, and if she's reading this, I thank her here. I truly appreciate and totally accept her apology. Migraines can really mess with us, and I can totally understand.
Had her comment and subsequent personal Facebook message been the end of it, I wouldn't be writing this post. Later on yesterday afternoon, I received a private Facebook message from another Facebook "friend." Again, I was stunned. Then I was frustrated, hurt, and angry. That message said:
"You're supposed to be a patient advocate so you shouldn't be taking sides in the upcoming election or posting links to candidate web sites. Your opinions should be kept to yourself. I have always respected you and your work as an advocate, but if you continue posting political endorsements, I'm going to unfriend you."
What? First of all - again - my posting the link to that article wasn't a political endorsement. I posted it because of the issue with predatory pricing of DHE.
Now, I want to make a few points:
Nobody is going to agree with another person all the time. That's just life. Anyone who accepts only people they agree with all the time are going to get very, very lonely.
Everyone is entitled to their opinions - even patient advocates.
It wouldn't be at all out of line for a patient advocate to endorse a candidate based on their positions on health care and other issues that impact patients. I choose not to - precisely because of nonsense like this.
I am not a machine programmed to always say what others want me to say.
I am a Migraine patient, much like those for whom I advocate. Being an advocate doesn't make me perfect; nor does it take away my rights to free speech as an American citizen.
It is not a sign of respect to attempt to tell someone what they can and cannot say or threaten to "unfriend" them on Facebook because you disagree with a link they post.
Wrapping Things Up:
I've grown weary of rudeness, intolerance, and negativity. The tone and aggression of the current Presidential campaign seems to be spilling over onto other people. To me, all the name-calling, negativity, and nonsense of the campaign is unacceptable. Thus, it follows that I also find it unacceptable when such attitudes aimed at me or anyone else.
Yes, I'm a patient advocate. But, I'm also a person and patient in my own right, and I have strengths and weaknesses, feelings, the right to express myself, etc.
Here's something I hear people asking over and over again, and I echo it, "Why can't we all just get along?" Whether we believe in "the golden rule," karma, or whatever, we should be treating others as we wish to be treated. Imagine how much better everyone's lives would be if more people lived by that rule!
If you're like me, you'll use anything you can to deal with Migraines, and you have your "favorite things" for doing so.
One of my favorite things is a little vial of aromatherapy smelling salts that I keep with me when I'm out. It serves to purposes for me:
It helps with nausea during a Migraine attack.
Using it quickly has helped me avoid Migraine attacks from perfumes and other odors.
Let me share with you two examples of the second purpose...
While attending a conference, I got on an elevator one morning, and quickly found myself surrounded by high school cheerleaders who were attending another conference. What do teenage girls love? Perfume! Just as I was being assaulted by several fragrances that the girls were wearing, I whipped out my smelling salts, put the vial directly under my nose, and kept it there until I was off the elevator and clear of the miasma of fragrances. I stepped out side for a bit of fresh air, then went back inside and got on with my day - without a Migraine. Yay!
One day, I was stuck in very slowly moving traffic due to road construction. Much to my chagrin, I ended up behind a large truck that was spewing dark, noxious exhaust - another of my Migraine triggers. Once again, I grabbed my smelling salts and kept the vial directly under my nose until traffic moved, and I was able to get around that truck. I was really annoyed at the prospect of getting a Migraine because of the truck exhaust as I still had several hours to drive that day, and I won't drive with a Migraine. Fortunately, I didn't get a Migraine. Again - Yay!
I keep a few aromatherapy supplies around and make my own smelling salts. In fact, I make more than one type and keep them around. Peppermint helps nausea. Lemongrass or red mandarin help with the feelings of depression and anxiety that can occur during a Migraine attack. Eucalyptus helps when a Migraine causes nasal congestion. If you'd like to see, step-by-step, how you can make your own aromatherapy smelling salts, take a look at How to Make Migraine Aromatherapy Smelling Salts.
What are some of your Migraine favorite things? Please leave a comment below, and share them with everyone.
There are tons of videos about Migraine on YouTube. Do you have favorites? There are quite a few on my favorites list. Some of them a by patients sharing their experiences. Some are by doctors, and we can learn a lot from them.
Then there are some great videos that Dr. Fred Sheftell did. Fred was a great Migraine specialist and researcher, but he was so much more too. He was a wonderful, caring man, and he was quite a musician.
Fred wrote a number of songs related to Migraine and other headache disorders. Originally, he and a group of other doctors who were also musically inclined recorded his music as part of a continuing medical education CD. The songs were great and so much fun that they've made their way onto YouTube and iTunes.
Do you ever have The Migraine Blues? One of Fred's songs IS The Migraine Blues, and watching this video always chases my blues away. I hope you enjoy it as much as I do...
Happy Sunday to my Migraine family! As always, I hope you're doing well and that your head is being kind to you.
In a Facebook group, I just replied to a woman who had posted about an eight-day Migraine. Yikes! If I'm reading her original post and her subsequent responses correctly, she hasn't called her doctor about that Migraine.What has me thinking so much about this topic is that it's not unusual to see people posting about long Migraines.
I'm not sure why, but for some reason, it always surprises me when people have a Migraine that's been going on for days, but they haven't called their doctor. So, I'm theorizing about why people don't call their doctor when they find themselves in this situation. Maybe it's because...
they don't realize that it's not "normal" for a Migraine to last longer than 72 hours.
they don't realize that we should have access to rescue medications to use when our first-line abortive medications fail.
Whatever the reasons, my heart goes out to people who have these horribly long Migraines, and don't seem to have anything to do about them. Here are a few points about long Migraines and their treatment:
A Migraine attack generally lasts from four to 72 hours.
When a Migraine lasts longer than 72 hours, it's termed "Status Migrainousus," and we should contact our doctors for help breaking the Migraine.
Our doctors should be willing to work with us on a plan for times when our first-line abortive medications don't work.
It is not unreasonable for us to expect our doctors to provide us with rescue medications as part of our plan for times when our first-line medications don't work.
The emergency room and urgent care facilities are not good options for Migraine treatment. We're far better off getting help from our own doctors.
The bottom line here is that I hate to see people suffering and perhaps even taking risks. Asking our doctors to work with us on emergency plans and to prescribe rescue treatments isn't at all out of line. It's a very reasonable request, and one that the Migraine specialists I know are happy to discuss with their patients. There may be times when every option we have at home fails, and we can't reach our doctors, but those times should be very rare. With our doctor's help, we should have the tools we need to care for ourselves and, when those fail, be able to reach out to our own doctors for help. That said, we do need to not wait until evenings or weekends to call if we can call during office hours. If your doctor isn't willing to discuss an emergency plan and rescue treatments with you, consider a new doctor. It's your health at stake. It can be difficult, but we all need to be our own best advocates, recognize our needs, and take reasonable steps to see that those needs are met.