No more Mr. Nice Girl

As some of you may know, I had a checkup at my neurologist's office early Monday morning. In a post a couple weeks back, I showed you the letter I wrote to him requesting that he be the only person I see during my visit. I suppose I shouldn't have been surprised to receive a call from his assistant/receptionist person and not him. She started out the voicemail all wrong, calling me by the wrong name (the name she chose, and quickly corrected, is one I really dislike--though it sounds a lot like my first name, it drives me NUTS when people call me it; in seventh grade I won the most prestigious award in school and the principal announced this name instead of my own--ew!). She had a message from Dr. _____ himself for me (if they talked about it, why couldn't he have called me himself): he wanted me to know that he takes the time to see every single patient at each visit but that it's just not possible to guarantee that I'd have my visit with only him. The point that he visits with every single patient was reiterated twice. (Um, shouldn't a doctor see his patient? Am I to feel honored that he bothers with a personal visit at all?)

I was not impressed with the outcome.

On Monday morning, I showed up on time for my appointment, having commuted the night before. (I slept at a friend's house in the big city so I could be ready and rarin' to go in the a.m.) I asked told the never-smiling-yet-never-exactly-rude receptionist (NOT the one who called me, mind you) that I requested to visit with just Dr. _____, even if it meant waiting a little longer for the appointment to start. She was, to put it mildly, unhelpful. "There's probably no way that can happen," she began unapologetically. "That's just not how it works. We have to follow protocol, and there's no way to know in advance who's going to be free to take you back for your initial consult."

"I understand that. I did write a letter requesting this, though, and--"
(Interrupting): "That's just not how it works. It doesn't matter if you write a letter or call or ask now, you just go back with whoever's free." Interrupting. Unsmiling. Unhelpful.

I retreated tearfully to the fluorescently-lit waiting room, adding one last deflated, "I get it, but for the record, that's my request." I lost.

Moments later, my Least Favorite Nurse Practitioner emerged. She's the entire reason I ever began requesting neurologist-only visits; though my request was only granted once in a few years, I did have the good fortune of having a better NP take me back for the initial consult during my last several visits. To my relief, she called back the only other patient waiting with me. A moment later, that patient reemerged and she said, "I'm sorry--I meant to call you, ____. I haven't had my coffee this morning." "Neither have I, no problem," I said, hoping that for once we had established some kind of friendly banter.

We walked into the room in which the patient sits and answers questions using the frustratingly simplistic Likert scale questionnaire. The shades on the windows, which cover an entire wall, were all drawn. The overhead fluorescent light was only feet above me, ready to start an attack. "Do you mind if we dim the lights a little?" I asked in what I heard as a pleasant voice. Nearly every doctor or professor or any other person with lights like this I have seen in the last few years has been more than accommodating when I make this request--surely someone who specializes in migraine treatment would understand, eh?

Wrong.

"Um...we could, but I wouldn't be able to see," she said. I am not one to assume folks are talking down to me; in fact, when I find out that someone isn't a big fan of mine I tend to be pretty shocked. Therefore I do not think I was imagining the slight touch of patronization in her tone. (Duh! Darkness means you can't see! Why didn't I think of that? I guess I was foolish to believe that she could open the blinds and let the sunlight come in. I'm so dumb.)

Cue the teary eyes again. I knew this wasn't going to go my way.

She asked me the open-ended question, "How have your migraines been?" but only listened for the first couple seconds. She had opened my file and was reading the letter I'd written to the doctor, the letter in which I requested I not be seen by the likes of her. Great. She zoned out while I talked about my condition. This was probably extraordinarily productive, and it certainly made me feel as if she cared. Ha.

We began the classic "On a scale of zero through three, how bad have your headaches been? How many days have you missed work? How many social events have you missed?" routine. Any time (seriously--ANY time) I tried to clarify my answer ("Well, that's a 2, but only if I've had alcohol the night before..."), she looked at me or the computer screen blankly, finger hovering over the mouse button, waiting for me to end. Every time I was finishing my explanation she'd cut me off with, "Okay," and then launch into the next question. GRRRRR!!!!

The visit with the neuro. was okay. The NP had updated him on my answers, my weight, and all that jazz, so he just had some questions about how well I was tolerating the Petadolex and wondered if I wanted to try Imitrex. "You've never been on that, right?" he asked, repeating the question she'd asked me. "Uh, yes. For three years or more." "Oh." Thanks for reading my file before my visit. (Granted, this error in forgetfulness would have been excusable had I not had the buildup of frustration already.) He slapped his legs lightly with the palms of his hands, indicating he was about to stand up and walk out. "Oh, I do have a long list of questions for you." Boom. There I go taking the visit into my own hands. Go me! Except it didn't feel good, or victorious, or especially helpful. I felt beaten down and rushed despite his understanding smile and pretty good answers.

I think it's time for a new doctor.

Thanks for bearing with me.

MigraLens, Irlen, etc.--do special lenses work?

I write in the hopes you can help me. I am interested in biting the bullet and finally buying sunglasses that were made with the photophobic migraineur's needs in mind. Does anyone reading this have Migralens or glasses made by Irlen? If so, tell me what the lenses are like and how they're working for you. I'm especially interested in their effectiveness in combating fluorescent lights.

worst day in awhile...

I awoke this morning around 8 AM knowing I'd have a migraine soon. I made myself eat some breakfast, and I had a cup of tea (two teabags: one traditional black tea bag, one herbal peppermint tea bag) in the hopes that the smell would calm me and the caffeine would help. No such luck. Breakfast seemed to zap all the energy I had, and I took a nap for a couple of hours in the hopes of waking up refreshed.

In the evening, I got up to shower and begin my day at last. The vague pain and fatigue that had been bothering me all day set in completely--within five minutes of standing up and walking around my house, the pain was sharp behind my left eye and I decided to take some meds. I got a little desperate today and now have way too many things in my system: I took a Naproxen tablet this morning, had three Petadolex as an abortive measure (you can use P. as a preventive and/or an acute treatment), and eventually took my Relpax when I realized the other pills were doing nothing. Still no results. Last but not least I had one Lortab--this is my barely used last resort.

I didn't want to cancel my plans, so I went out with my friend. As we walked downtown, I said, "Wow--the lights on the buildings look so sharp and bright tonight. And beautiful. Don't you think so?" "I don't see that." "Really?" "Yeah. Oh, no! Does this mean you're getting a migraine?" "Oh, I already have one. I've had one all day."

An hour into our dinner all the medication seemed to hit at once. I felt the telltale tingle of the Lortab (followed by the itchiness that is an obnoxious side effect!) as I sipped the coffee I'd ordered, my vain last attempt to rid myself of the pain. It all helped at once and I had a great night despite all the foreign chemicals rushing through my veins. I really don't like being hopped up on meds, but the way I feel now is far superior than drifting painfully through that fog I waded through all day.

Goodnight.

supporting the students

I recently found out that a young woman I tutor is a migraineur--her headaches keep her out of school for days at a time, and when she finally got some medication from a doctor last week, the side effects of that medication made her so fatigued and out of it that she still couldn't go to school. Her mom mentioned to me that they'd be attending a meeting at her high school this week, one in which the Powers That Be would decide if this migraine sufferer would be held back a grade due to her absences. (A concomitant problem? The declining grades on her report card, a problem exacerbated by her frequent absences.)

Below please find the letter I wrote to the school--I wrote it before asking her mom if they even wanted my take. I mentioned that of course she didn't have to include it at all during the meeting. To my happiness, she was grateful for any and all weapons she could put in her arsenal and was to present it to the school's administration in a Wednesday meeting. I've called her X and removed any identifying details to preserve anonymity.

After the letter you'll see the attached list of webpages I included for the family. They, like many who have just recently learned that migraine is affecting a loved one, are worried about the problem but aren't entirely familiar with its complexity.

If you all have any tips for me or the student involved, please throw 'em at me.

February 26, 2008

To whom it may concern:

My name is _______, and I have known X for ten months now. I am a tutor for the School District and have had the opportunity to work with X on her school work in addition to talking with her about her personal life.

A few weeks ago, I learned that X is a chronic migraineur. Immediately I empathized: you see, I am a severe chronic migraineur, and the disease sometimes debilitates me so much that I am unable to work, attend family functions, or spend time with friends.

It is my understanding that X may be on the cusp between ninth and tenth grade and that her frequent absences might cause the school to decide that she must repeat ninth grade. I’m writing today to reassure you that, when suffering from a migraine headache, it is next to impossible to stand up and walk around, let alone attend school. Her absences were far from desired, as she spends most of the time in her dark room feeling pretty awful whenever she takes off school. Even after seeing a doctor for her condition, she was very much under the weather, a combination of her migraines and the sleepy side effects of the medication.

Please keep in mind the severe disability incurred by migraine sufferers when thinking about X's case. She is a bright, enthusiastic, genuinely caring young woman who faces great adversity. She learns quickly with one-on-one instruction and I am more than willing to help her catch up on any work she’s missed during her absences.

Attached please find a list of resources on migraine disease, including descriptions of its effects and triggers. Approximately 28 million Americans have the disease and are dealing with it every day. Please do your part to make sure that X is able to live her life as healthily as she can and consider the attached information in making your decision. I recommend starting here first:
http://headaches.about.com/od/migrainedisease/a/what_is_mig.htm
Then you might want to do a search on “the impact of migraines” in order to see how devastating the disease can be to the sufferer and his/her family and friends. This page presents some information on that: http://www.medicalnewstoday.com/articles/16338.php

Again, I am able to work with X to help her improve the grades that may have slipped as a result of her absence. I can be reached at ______ with any questions or concerns.

Sincerely,
________ __________

Migraine Disease Resources

There exist thousands of informational pages on migraine, ranging from articles hosted by the National Headache Foundation to personal accounts of dealing with migraine disease written by sufferers, care givers, doctors, and friends of migraineurs. Below please find a selection of websites I have found helpful, sites that will help you if you take the necessary time to look through them and read them carefully. There is a great deal of information to learn, and the more you are able to educate yourself, the more control you’ll have over your disease.

http://www.4woman.gov/FAQ/migraine.htm
What is a migraine? How is it treated? Why does the disease occur in the first place? These questions and more are answered on this Health & Human Services webpage.

http://www.migraines.org/
MAGNUM, the National Migraine Association’s headache support group page. This site features TONS of helpful information, links to other sites, recommendations for patients and healthcare providers, and much more. A good place to start your learning process.

http://headaches.org/consumer/educationindex.html#typehead
The National Headache Foundation has a LONG list of resources and helpful information for people wanting to learn more about Migraine. This particular page is entitled “Educational Resources” and will really come in handy and help you get a better understanding of the complex nature of migraine disease.

http://www.medicinenet.com/migraine_headache/article.htm
A comprehensive description of migraine disease, its effects, its cause, and what patients can do to improve quality of life.

http://www.medicinenet.com/headache/page9.htm#tocv
What are some common migraine triggers?

http://www.migraines.org/disability/index.htm
This section of the MAGNUM website explores the myriad issues faced by migraineurs. Migraine is a debilitating disease, not just a headache. This page has many articles and references that are good to cite when meeting with a school or workplace regarding special accommodations that should be made for migraine sufferers.

http://migraine.blogs.nytimes.com/
The New York Times has this blog written by several prestigious headache sufferers, all of whom approach the topic from a different perspective. I believe this site is only going to be updated in February 2008, though it will be kept online after that.

http://themigrainegirl.blogspot.com/
_____'s anonymous migraine blog, featuring helpful links and information on what does and does not help her cope with severe chronic migraine disease.

http://www.healthcentral.com/migraine/understanding-migraine-000097_10-145.html
Lifestyle changes for preventing migraine disease, including shifts in diet.

http://www.nutrition4health.org/nohanews/NNS02DietMigraineHeadaches.htm
The role of diet in migraine headaches.

http://altmedicine.about.com/od/popularhealthdiets/a/migrainediet.htm
This About.com page discusses the relationship between migraine and diet. The importance of eating breakfast each day cannot be emphasized enough, as keeping a regular eating schedule will prevent many migraines. (Skipping meals is one of the most common and controllable triggers.)

http://www.webmd.com/allergies/guide/food-diary-helping-uncover-food-allergy-triggers
This WebMD.com page is a good jump-off point for migraineurs who want to figure out what, if any, food items are triggering their headaches. Keeping a general headache diary can help you and your healthcare provider figure out some of even the most elusive migraine triggers so you can improve your well-being. Making a diary of your own in a little notebook will probably be more helpful than using the chart on this page, but be sure to look at the elements they include on the headache diary chart so you can be sure to add those to your chart.

http://www.fpnotebook.com/ENT/Allergy/ElmntnDt.htm
This website features a guide for an elimination diet. When followed properly, a well-designed elimination diet like this one can help migraineurs figure out what foods are triggering their headaches and which ones are “safe” for them. Remember to consult with a doctor before beginning any major dietary change in order to learn of the best methods possible.

http://www.whfoods.com/genpage.php?tname=diet&dbid=7
Another page that helps those who want to effectively identify headache triggers.

http://www.fpnotebook.com/Pharm/Nutrition/TyrmnVsctvAmns.htm
A partner site with the one above, this page is a headache-specific elimination diet and has a list of common foods that are found to trigger migraine in many sufferers.

http://abcnews.go.com/Health/PainManagement/Story?id=4170218&page=7
An ABC News article that gives a broad yet informative view of seven of the most common headache triggers.

http://www.dailymail.co.uk/pages/live/articles/technology/technology.html?in_article_id=505571&in_page_id=1965
This article is one of many news items out there describing the link between compact fluorescent lighting and migraine headaches.

http://www.nytimes.com/2007/12/22/business/22light.html?_r=2&oref=slogin&oref=slogin
The New York Times article on fluorescent lighting’s effect on migraineurs.

http://www.healthcentral.com/migraine/triggers-160927-5.html
Another article focusing on the link between fluorescent lighting (both the old-fashioned long bulbs and compact fluorescents) and migraine.

http://www.needymeds.com/
This site helps people with limited resources get the medication prescribed by their doctors. A social worker will be well-suited to help with this and see if it can assist you in particular.

I finally have links!

Turns out I was using an old version of blogger, or else the template I used to have didn't support extra page elements (like lists of links).

So now I'm slowly making a list of links. I have far more webpages in my "Migraine" bookmark folder on my laptop, so suffice it to say I'll be adding to the list soon.

If you have a migraine-related blog or webpage you think I should link to, let me know!

Thanks, and sorry to all of you who've linked to me for so long without my reciprocating--it was merely cluelessness!

more news on the fluorescent front

Today Migraine Blog informed readers of a Washington, D.C.-area newscast about one of the topics that really pushes my migraine button.

Here's the link to the article and video. I tried to embed the video, but the HTML was screwed up and I didn't know how to fix it.

Here's the short letter I whipped up in response. I'm getting a little punch-drunk at the moment and that may shine through when I go off on my handicapped rampage (see below). I should probably stop staring at this computer screen now (speaking of lighting triggers). Read on, my friends:

I've suffered from severe chronic migraines for over half my life, and one of my biggest triggers is fluorescent lighting (compact bulbs or the old-fashioned tubes). Despite Sylvania's argument that "there's no scientific evidence" that fluorescents are a trigger for thousands, if not millions, of migraineurs, the truth cannot be ignored: people are getting ill to the point of becoming disabled after having been under such lighting. I, like Burchfield, am very "green" and want to do all I can to save the earth. A daughter of an environmental scientist, it's second nature for me to do what I can to see that the earth stays (or tries to get) healthy. I'm not creating a myth here. I have not spent what has amounted to months of my life in classrooms and office areas wearing a hat AND sunglasses, trying my best to shield myself from the light that is bound to get into my eyes no matter what. For many, migraine is a disability and should be treated as such. Imagine that handicapped ramps and elevators somehow damaged the environment. Installing "green" stairwells in place of ramps and elevators would never be a reality in a country that has learned to graciously accommodate to the needs of those who cannot walk. On the same token, we must acknowledge that migraine disease, while "invisible," is severely debilitating and serious. We must do all we can to ensure the health of our planet without sacrificing the health of the humans that inhabit it.

For more information on the link between fluorescents and migraine, try a quick internet search using those words and/or check out this site, which has information and more links to visit: http://irlen.com/index.php?s=news

Thanks for your time.

Sincerely, The Migraine Girl

migraine on the radio

Listen up!

Migraineurs on an NPR show. Paula Kamen speaks again, and it should be good! Download the podcast from this site if you can't listen live.

the ol' TMJ switcheroo

I have TMJ dysfunction, and it often exacerbates my Migraines--sometimes it's a trigger or at least a contributing factor to my pain, but mainly it's an annoyance.

Lately, as in the last 4 weeks or so, I've had steady pain in the right side of my jaw, right near my ear. This is odd in that my jaw used to crack and hurt on the LEFT side. Has anyone else had their jaw pain switch sides? I know that the side of the head your Migraine occurs on can switch, but this TMJ pain switch is unfamiliar and unpleasant. It HURTS!!

turning off the stress faucet

I'm in the midst of a really stressful situation. It involves money, acquaintances, neighbors, friends, and lots of blame and he said-she said. Suffice it to say it's entirely unpleasant and extremely stressful, especially as I seem to be the key player in terms of who gets scolded and/or dumped on.

Today I had three back-to-back phone calls from people relating to this Stressful Issue and was near tears during all three of them. To my surprise, I kept my wits about me and didn't start to cry. (If I start to cry, then everything goes to the3 dogs: my arguments, my careful planning, my usually diplomatic nature, and so on.) After the first phone call ended, I cried--I admit it. But I didn't cry DURING the call, so I still appear tough and vigilant! Ha. My boyfriend, whose praises I've lauded before, encouraged me to stop crying, knowing full well that a Migraine storms in full-blast after I burst into tears. After a minute or two of indulgence, I got it together and followed his advice.

Not crying doesn't mean you don't want to, though, and it doesn't make the stress any better. Crying, for the most part, relieves my stress for an instant but tends to have rough payouts later, as a headache most certainly comes marching along eventually.

It's after nine at night and I have the beginnings of a Migraine attack, my third one in four days. I cannot give in. Somehow it feels like getting a Migraine will mean admitting the stressful situation has won out. And that just makes me even more riled up.

Grrr!

Growlingly yours,
TMG

I have a doctor's appointment, not an assistant's appointment.

Today I wrote a letter to my neurologist. For posterity's sake, I thought I'd include it here. I'm hoping he responds the way I'd like him to.

February 16, 2008

Dear Dr. _________,

On March ____ I have an ___ appointment with you. Each time I go to your office, I request to meet with you and only you, even if it means waiting a longer time to be seen. My request is granted less than half the time. To my frustration, my request seems not to be taken seriously, as more often than not I find a nurse practitioner at the door to greet me. I realize that your staff is incredibly knowledgeable and often very helpful, but I am not paying to see them. I am paying to see you.

You may recall that I’ve been paying out of pocket for my medical expenses for a couple of years now; the drive from _______ plus the expensive visit is only worth it to me if I am to meet with just you.

For my upcoming visit, I request that this be the case. If it turns out I meet with a nurse practitioner or other doctor for most of the visit and just see you for the remaining few minutes, I will probably start looking for a neurologist closer to my home.

Thanks so much for your time and continued support.

Sincerely,

____________