communication

I'm not one to normally post much migraine-related news, but I couldn't pass this one up.

Dr Alexander Mauskop over at Headache NewsBlog recently cited a study done by Dr Richard Lipton and his colleagues, showing that doctors often don't hear out their migraine patients. This may come as no surprise to many of us that there is this breakdown in communication between doctors and patients.

The problem seems to be (from my reading of his short blurb) that many doctors ask close-ended questions of the "yes or no" variety. More useful would be "open-ended" questions that would require a longer response from the patient, a chance to explain.

Unfortunately, the problem doesn't end there. The information the doctors did obtain from the patients was often incorrect, and tended to make the patient's disability to be less than it actually was. Meaning preventive medication was often not discussed or prescribed when it may have been appropriate.

So what is a migraine patient to do? Many of us know the frustration of having a doctor not listen to us. In fact, that is much of the reason I fired neuro #3.

First, I'll link you to a couple of great articles over at My Migraine Connection, courtesy of Teri Robert:

1. Migraineur's Guide to a Successful Doctor's Appointment
2. Coping With Busy Doctors
3. Is Your Doctor Right For You?

Next, I'll share a few techniques I've used, that I'm still in the process of developing. Many of these ideas are modified from suggestions I've gotten from my buddies over at the MMC forums, so I certainly can't take credit for their ideas. But I would like to share them with all of you in the interest of better health care for all of us.

What I bring with me to my appointment:

1. Bulleted list of my relevant health history, including approximate dates of diagnosis.
2. List of my typical migraine symptoms.
3. List of my migraine triggers: suspected, confirmed and stackable.
4. List of medications I've tried: including dates, dosage, results and side effects.
5. List of therapies I've tried: including dates and results.
6. List of lifestyle changes I've made: including dates and results.
7. List of all current medications and supplements I'm taking: both prescription and OTC, including dosages.
8. For my current preventives, a list of the side effects.
9. List of concerns and questions, typed, with space left between the questions so I can write my doctor's answers.
10. Headache diary. I keep a daily diary and summarize it onto a monthly sheet. I bring both to my appointment and give a copy of the monthly sheet to my doctor. On the summary sheet, I note days I had a migraine, when it started, migraine symptoms, pain and disability levels on a 0-10 scale, any change in medication, abortives I've taken and medication side effects. I also track my menstrual cycle on here, even though I don't seem to have menstrual migraines. I've developed some shorthand abbreviations for this information, so I note that on the bottom of each sheet.
    

I take two copies of all this paperwork with me to the appointment, one for myself and one for my doctor. I write my full name, birth date and the date updated on each page. Taking two copies of the question sheet is especially important; that way, I don't chicken out from asking any of my questions and the doctor can follow along with me. Then all of these pages get added to my medical record in the office, and I have a copy for my own records at home.

Another suggestion that's been made is to take a tape recorder and record the appointment. Inevitably, no matter how well-prepared you are or how well you listen and take notes, you're bound to miss something. By recording the appointment, you can go back later and listen through the appointment. I plan to try this at my appointment with my new specialist coming up soon.

Communication is a big challenge in any relationship. In a doctor-patient relationship, it is one of the biggest challenges and most important skills. Because our migraines can't really be "seen" or "measured" for the most part, it is up to us, the patients, to communicate as best as we can. Going into an appointment well-prepared is a great first step.

Obviously communication is a two-way street. Sometimes a patient just can't overcome a doctor's inability or unwillingness to listen, and that's when it is time to move on.

Do you have any other suggestions? Please comment - I would love to hear them and share them with the rest of the migraine community.

EDIT: Dr Lipton's original study can be found on PubMed. I haven't had a chance to take a look at it yet, but I'll post the links here for you folks. In Office Discussions of Migraine: Results from the American Migraine Communication Study. Thanks to Dr Mauskop for providing me with the link.

-MJ

stroke awareness month

May is Stroke Awareness Month. Pam over at Pink Pearl Girl's Migraine World wrote a great blog entry about stroke, so instead of repeating everything she wrote, I'll link you to it.

Migraine symptoms can often mimic stroke, so I'll remind all my fellow migraineurs out there to have any new symptoms checked out immediately by a doctor. If your symptoms mimic a stroke and are new to you, don't hesitate - call 911 and get help. I had a scary experience of this myself last month, and while I turned out to be okay, I don't for a minute regret having DBF call 911 for me. When dealing with the brain, you don't want to mess around!



-MJ

weirdest migraine trigger contest winners announced

Fellow migraine blogger Megan Oltman of Free My Brain From Migraine Pain held a contest last month looking for the weirdest migraine trigger stories. The contest was judged by Diana Lee of Somebody Heal Me and Kerrie Smyres of The Daily Headache.

I must be in a contest-winning mood or something, because Kerrie and Diana decided my story was worthy of second place!

You can check out my weirdest trigger and the other winners over at Megan's announcement of the winners.

-MJ

eye of the storm

Tonight marks one week since I reduced my dosage of Topamax to 50 mg from 75 mg. This past weekend I actually felt decent. Not "good", really, I never feel "good". But decent. I can live with that.

My moods have leveled out. The depression has lifted. It's not gone, and I don't expect it to be until my migraines are under better control. But I can live with this more mild depression, rather than the severe and suffocating version I had been feeling more often up until last week. Luckily the weird anxiety I had settled down after a few days. Some of the other side effects from the Topa are still sticking around, but I don't expect them to disappear magically.

The other good news is that my head pain has been noticeably better the past few days. Aside of yesterday, when it reached a 7 out of 10 - which was directly attributable to the hours I spent under buzzy fluorescent lights at two doctors' offices - my pain has largely stayed in the 4-6 range. It's normal for me to wake up with pain around a 4, which then progresses throughout the day, maxing out around a 6-7 and topping out at 8 or more about once a week or so. Last month I had a whole string of pain days that hit an 8 and I was miserable. Compared to that, I'm almost carefree.

I have to be very careful not to overdo it though, or I'll just end up doing my head in with some worse pain.

I'm wondering if the Topa might be kicking in a little bit. I don't want to jinx myself and end up with bad pain again, but I'm going to pursue this line of thinking for a minute. I've been taking the Topa since the end of February. I was on the 75 mg dose for six weeks before I had to cut it back. It can take up to three months for a preventive to start working. At this point, I don't think it's possible for a medication, any medication, to break this long migraine cycle I've been in since November. I do believe I need much more aggressive treatment, whether in the form of IVs or steroids or something else, before my pain will actually stop. But that doesn't mean the Topa might not reduce my pain some in the meantime. Hey, I'll take it.

I still plan to have a discussion with my new doctor about the Topa, and whether I should stay on it or not. The side effects I had at the higher dosages were really awful. Hopefully when I see the doc on May 21, I'll have a better idea of if my body can tolerate the lower dose of Topa and if it is doing anything for me.

It's also entirely possible this is just one of those "normal" cycles this migraine seems to go through, and in another week or so I'll be in absolute misery, curled up on my couch, whimpering. Hey, it's happened before. I'll hope for the best while I prepare for the worst - that's all we migraineurs can do sometimes.

Whatever the reason, I'm trying to enjoy this relative reduction in my pain without questioning the why. I've learned that the best thing I can do is keep good daily records of how I'm feeling, and do the interpretation with my doctor's help later.

For now, though, it's nice not to have an icepack tied to my head. I may have to get one out in another hour or so, but that's an hour later than I did last week.

May Headache & Migraine Disease Blog Carnival

MAY HEADACHE & MIGRAINE DISEASE BLOG CARNIVAL
Somebody Heal Me

Don't forget to submit your entries for the May Headache & Migraine Blog Carnival, which is being hosted at Atomic City.

The May theme is "Migraines and Exercise: How Do You Remain Active?" Entries on any topic that is particularly interesting, educational or inspirational for headache & migraine sufferers are also welcome. Your blog need not be limited to the topic of headaches and migraines to participate. If you have relevant posts to share, you're encouraged pass them along.

Entries are due at midnight on Friday, May 9th. They may be submitted through the form on the carnival website or directly to Diana by e-mail.

The carnival will be published on Atomic City on Monday, May 12th.

If you would like to be added to Diana's carnival mailing list to receive updates and reminders or are interested in hosting a future edition, please send Diana an e-mail at somebodyhealme (at) dianalee (dot) net.

my torrid love affair with Topamax

I'm currently on my third trial of Topamax, one of only four medications that has been approved by the FDA for use as a migraine preventive medication. I have taken Topamax twice before. The first time was for two and a half years in college, which was a great success, and in fact is the reason I was able to finish college on time. The Topa got rid of my chronic daily headache within a week of me starting the 25 mg dose, and when I increased to the 50 mg dose I only had one or two migraines a semester. The difference in my quality of life was amazing. After I graduated, my neuro at the time suggested I titrate off of it to see how I would do.

I didn't do very well, and I've been looking for a preventive regimen ever since.

Neuro #2 had me try Topa right off the bat. This trial (#2) was for two months in the beginning of 2007. I had a few days where it seemed the Topa might be working, but my CDH came back, and my neuro and I decided to discontinue it in favor of other drugs.

When I saw neuro #3 at the beginning of this year and she reviewed my history, she noted that I had only been on the Topa for about two months, which wasn't long enough for a fair trial. Preventives can take up to three months to start working. A long time to wait while you're in pain. At the time, I didn't know it could take that long so I didn't push the issue. Knowing more now, when neuro #3 suggested I give the Topa another trial, I was willing to do it, since I had such great success with it in college.

Well, I started the Topamax in February, and it's been a bit of a wild ride.

Neuro #3 had me on a pretty standard titration schedule - start with 25 mg, increase to 50 mg after the first week, then 75 mg after another two weeks. At 25 mg, I didn't notice many side effects. At 50 mg, I noticed some, but they were expected: taste changes, dry mouth, cognitive issues after a few weeks, lessened appetite. At 75 mg, new side effects cropped up that I never had had before: tingling, hair loss, tremors, nausea, stomach pains. Nothing intolerable. I stayed at this dose for about five weeks, as my migraine cycled worse and I generally felt unwell. The side effects seemed to level out, so I kept with the Topa.

After I fired neuro #3 and had a particularly bad week of pain, I called my PCP out of desperation. She suggested I increase my dose to 100 mg to see if that would make a difference before my appointment with neuro #4 next month. I decided to give that a try, but after a weekend of new and frightening migraine symptoms, I decreased the dose again to give my body a break. This was ten days ago.

Since then, I've been developing new side effects. The tremors and tingling that started at 100 mg haven't completely gone away. The nausea and lack of appetite have gotten worse. Still I stuck with it, hoping the side effects would ease, especially since the last few days have been relatively low-pain.

Except the last few days, I've started to wonder if the Topa is contributing to my moodiness and depression. Last night, when I had a weird and very out-of-character anxiety episode, I knew it was the Topa. So today I decreased my dose to 50 mg once again.

It's really amazing to me that a drug that my body once tolerated so well, and that was so successful for preventing my CDH and chronic migraines is now treating my body so poorly. Hopefully I'll feel better in a few days after the higher dosage is out of my system.

When I see neuro #4 in three weeks, I plan to tell him that I don't want to continue on the Topa (or the nortriptyline I'm also taking - but those side effects pale in comparison to the recent issues with the Topa). I hate giving up on a drug like this, but I can't put up with these side effects.

While I know that every medication that doesn't work is one step closer to finding one that will, it's hard not to feel at least a little bit like a failure when one doesn't work out - especially when it's such a spectacular failure.

headache poetry contest winners announced

The 2008 Migraine and Headache Poetry Contest winners have been announced over at MMC, and I am very excited to announce that my poem won third place!

Teri Robert's announcement can be found here, which links to all of the winners and honorable mentions, as well as all of the poems submitted this year.

I encourage you to check them out - there were some great entries this year!

photophobia and fluorescent lighting: a quest

Like many other migraineurs, I suffer from photophobia, a sensitivity to light. My photophobia is constant, and gets worse as my pain gets worse, but since I've been living with this particular migraine since November, the photophobia has been particularly stubborn as well.

Also like many other migraineurs, I cannot tolerate fluorescent lighting. Part of the issue is the color of the light itself: the fluorescents at my office are tinted a warmer yellow, which I can live with, as opposed to the horrendous (and cheaper) blue-white found in many stores. These fluorescents not only immediately worsen my migraine pain, dizziness and nausea, but also have an unpleasant tendency of sending me running to the nearest bathroom with soupey poopies within 15 minutes. If my office had this blue-white lighting, I would have had to leave my job already.

Unfortunately, the tint is not the entire story. The imperceptible flicker of fluorescents is enough to drive the sensitive migraine brain wacko. This makes it a particularly difficult problem to deal with. Many of us cope by wearing sunglasses, or tinted glasses, but this is not always a viable option for me since I work in a field where I regularly meet with clients and consultants, so wearing sunglasses to these meetings would not be appropriate. It also doesn't do anything for the flicker, really, just gives our eyes a break from the brightness of the lighting.

What is a migraineur to do?

Fortunately, the woman in charge of office services at my office is also a migraineur, so she was able to help me get the fixtures over my cube turned off. This makes it possible for me to get through a workday without being miserable. It does nothing, however, for the fluorescents in our conference rooms or in the rest of our office.

Some months ago, I came across mention of the use of Nike Maxsight tinted contact lenses as a way to ease light sensitivity in Dr Alexander Mauskop's Headache NewsBlog. This reference simmered in the back of my head for a while, and I have since come across other mentions of the use of contacts to address light sensitivity. The Migraine Girl asked in an entry about MigraLens and Irlen contacts specifically for combating fluorescent lighting sensitivity.

After much Googling, I finally scheduled an appointment with my ophthalmologist when I discovered that his office carries the Nike lenses. I'll also note here that Nike discontinued these lenses a few months ago, but I figured I could at least schedule the appointment and talk with the eye doc and see if he had any suggestions. Who knows, the Nike lenses could be my saviors, and I would just order them in bulk from an internet supplier.

I went in for my appointment two and a half weeks ago with my eye doc, and explained my problem. He thought for a few minutes, then came out with a surprising statement - he had a few ideas, and he wasn't sure what would work but he was willing to work with me until we found a reasonable solution. He specializes in contact lenses, so I felt somewhat confident in his statement. He had some trial Nike lenses at his other office that he would look through to see if he could find any for me, and he would also dig up some other trial tinted lenses - just regular cosmetic FreshLook lenses with a slight tint - for me to try.

By the end of that week, he had the Nike lenses ready for me. He scheduled a two-week follow-up appointment with me, to give me time to try out the lenses.

First reaction: they make me look like some sort of demonic beastie (migraine beastie, maybe?). The ones I tried are the grey-green tint, which actually wash my eyes out to black. A very strange effect, but one I would put up with if they solved the fluorescent lighting problem. I would even put up with the startled coworkers.

Unfortunately, I only made it a few days with the lenses. I discovered my brain started to freak out after wearing them for about six hours. The tinting in them was too strange a color for all-day wear. (Imagine the color of bug lights - that's what color these lenses made everything.) This tint was especially pronounced on cloudy days, and we have a lot of those here in the Pacific Northwest. I also had a run of several severe migraine days, which may or may not be related to the lenses. They did help out a lot with sunlight though, when worn under my regular sunglasses, so it wasn't a total loss.

I had my follow-up appointment with my eye doc today. He offered me another, much more expensive option, which is prosthetic lenses. With these custom lenses, he can control exactly how much light is allowed into my eye, and I will not see any sort of a tint. He took some measurements of my eyes for these lenses and told me my pupils seem to dilate more than they should (not surprising - they also dilate unevenly depending on the severity of my migraine).

I feel these are a better option for me than the Nike lenses, but custom = expensive. He's taking a look into pricing for me and his office will call before they order them. The price tag should come in somewhere under $1000 - I may be able to get some medical insurance coverage for this, but it's not likely. (My vision insurance is basically only enough to cover my annual exam.)

I will be seeing my new headache specialist in just under a month, and I plan to pick his brain about this, at least because I want to see if he'll write a letter of medical necessity. He may have some other ideas too, who knows. The nice thing about these lenses is that they will reduce the amount of light entering my eyes in the periphery, which I think may help quite a bit with the fluorescent lighting issue. It won't solve it - really, nothing short of avoidance or removal will - but it's something.

Before I make this much of an investment, I will be doing some thinking about this. A part of me had hoped that my migraines would resolve somewhat quickly so I wouldn't have to deal with the photophobia/fluorescent lighting issue. But that is not likely to happen, and I need to find some ways to make my life more livable in the meantime.

Crazy idea? Maybe. As a side note, more blog space will be devoted to the fluorescent lighting issue in the future, on the advocacy side of things. Stay tuned for updates.

terminology

The end of last year, when I was still seeing neurologist #2, I remember questioning the need for an accurate diagnosis. After all, chronic head pain is chronic head pain, and I need to find an effective preventive regimen regardless of what kind it is. It was about this time I began to wonder if I needed to consult with an actual headache specialist - someone who dedicated their practice to the study and treatment of headache and migraine - rather than just a neurologist. Since neuro #2 began to run out of ideas, I decided a fresh pair of eyes on my case wouldn't hurt, and I asked for a referral to a specialist, AKA neuro #3.

I was fortunate (I thought) to get in with neuro #3 in about two weeks. She was just coming back early from maternity leave since the other neurologist in her practice was leaving, and had not scheduled any patients yet, so I was at the top of the list. So I had virtually first pick of appointments and was able to schedule fairly quickly. The first appointment went well, and after looking at the list of five preventives I had trialed and failed, she wanted to try me on Botox, her main interest and area of research. If that didn't work out, we would retry me on Topamax, since I hadn't given it enough of a trial the year before.

After two months of waiting around, my insurance rejected the pre-authorization claim for Botox, labeling it "experimental". After a number of phone calls, she had finally agreed to write me a script for the Topamax, and once the insurance rejected the Botox I scheduled another appointment with her to discuss my options.

I had this appointment with her about a month ago. I went in well-prepared with a list of questions, and brought DBF with me in case he had any questions. For some reason, this appointment didn't seem to go as well as the first. Neuro #3 went over all my questions with me, but was completely unwilling to even discuss the possibility of rescue meds - saying simply that "they don't work" - and didn't want to discuss any treatment options for my daily migraine pain. When I asked her the difference between chronic daily headache and transformed migraine, she said they were different terms for the same diagnosis, and implied that my ongoing migraine is simply a headache - an implication I did not pick up on right away.

After the appointment, I had a weird sense of hopelessness I couldn't immediately pin down. The following week, my daily pain spiked again, so I decided to call in to try for an IV treatment, which neuro #3 had reluctantly offered to me as an option when I questioned her about it, with the caveat that it wouldn't do much for my "regular daily pain". It took me five days to get in for this treatment because of her irregular schedule: she typically only works three days a week. This scheduling mess, coupled with the feeling I couldn't shake that she had given up on me when the Botox was denied, finally pushed me to fire her. (My mom later pointed out to me that since I couldn't do the Botox, my doc had demoted me to her B-list of patients.)

Fast-forward to this past weekend, with all these strange symptoms I've been having. I called into the nurse's line early Monday morning to leave a message about the new symptoms that cropped up over the weekend. I got a call back - which I missed, of course, so the nurse left a message - saying that they would pass the message along to my doc on Tuesday when she was back in the office.

Tuesday (yesterday) afternoon, I finally got another call back - which I missed again, because they only ever call when I'm in a meeting at work - with a message from a different nurse. Neuro #3 said the symptoms were probably not from the latest IV treatment, and "may be" related to the "headache". If I still had some concerns, I could schedule an appointment with her nurse practitioner, and here is her phone number. Click.

Are you kidding me??

This short message confirms my instincts in firing this doctor's sorry butt were correct. She will not even call this migraine a migraine, only a headache. But now it makes more sense why she was so unwilling to offer any treatment for it, since she thinks it is only a headache, not worthy of any treatment.

So, it's on to neuro #4. I have an appointment scheduled with him on May 21, four weeks from today. I am much more encouraged by his office than by that of neuro #3. His staff is much more polite and helpful. I received my new patient information packet in the mail within a few days of my appointment being scheduled - rather than the day before my appointment - and the forms are much more detailed, including a depression screening form. I'm just very glad I didn't wait to move on to a new doctor and went with my instincts about neuro #3.

Now, I just need to get through the next few weeks.

betrayed by my own head

A few months ago, I read a book by Michael Stein, MD, called The Lonely Patient: How We Experience Illness. While much of this book is framed in the author's experience with terminal illness (not his own, but that in his family), he does speak to chronic pain throughout. He divides the book into four parts, corresponding to the four reactions he sees to chronic illness: betrayal, terror, loss and loneliness. Betrayal is certainly one of the emotional reactions I seem to revisit frequently on my journey toward acceptance of this disease.

This weekend - Saturday night, especially - was another visit of betrayal.

Over the past two years, my chronic daily headache has gradually become daily migraines, and now a continual migraine since about the end of November. On one hand, this has taken away the unexpected and often frustrating aspect of episodic migraine, which is you just never know when it might strike. I always know when it will strike, which is always. I wake up with the pain, I eat, breathe, work, think, walk, do and sleep with the pain. It's there, a constant resident in my brain, whether I like it or not. I'm doing what I can to dislodge it, but in the meantime, I'm stuck.

My brain decided to play a new trick on me Saturday night.

DBF and I were curled up on the couch after dinner, watching tv, when I had this weird wave of dizziness pass over me, followed by pins and needles all over and a sort of hot flash. Then the tingling settled in on just the left side of my body (arm and leg). After a few minutes, when it didn't pass, I started to get rather scared. Something isn't right, my instincts are telling me.

You see, a migraine that lasts longer than 72 hours, without at least a 4-hour break in pain while awake is status migrainous, considered a medical emergency because it puts the migraineur at increased risk of migrainous stroke. Having had this particular migraine since last November, I pay extra attention to new symptoms. And like any educated migraineur, I know the symptoms of a stroke.

So, I told DBF what was going on, that I was scared. We decided to call 911. He told the dispatcher what was going on, described my symptoms and told them how long my migraine had been going on. The paramedics got here relatively quickly - though it seemed like an eternity, of course - and checked my vitals while they asked me some questions about my symptoms. They left the decision up to me whether they would bring me into the hospital or not, but they saw nothing life-threatening that concerned them. They did remind me that they are only firemen, of course, not doctors. I decided not to go with them.

I did call the doctor on-call at my fired specialist's office to see if he thought I should seek emergency attention. He spoke with me for probably ten minutes, asked some questions about my symptoms, about my IV treatment on Friday, including which drugs they had given me, when, and if I had had them before; as well as if I had had these symptoms before. He also checked to see if I had had an MRI before (I had one a month ago that came back normal). He believes these new symptoms to be another manifestation of this ongoing migraine and described it as "complicated migraine", which is a descriptive term (not a standard diagnosis). He did not see any need for me to seek immediate care, but did encourage me to call my doctor today.

As unpredictable as this illness often is, we still expect it to follow a certain pattern. My pain is usually here, I usually have these symptoms, I usually get a migraine after encountering these triggers. Whenever our disease breaks the pattern, it's frightening for one thing, but we are also left with a sense of betrayal. Migraine beast, it's hard enough to cope with you on a normal day, but why do you have to change your pattern?

The tingling has not gone away since Saturday night, but I also have not developed any new symptoms. The doc on call told me some specific things to watch for that would indicate a need for immediate medical attention. I called into the nurse's line this morning and left a message about these new symptoms; I got a call back asking for some more information, and letting me know the message would be passed along to my (fired) specialist tomorrow since she was already gone for the day. (Another sign that I know I made the right choice in firing this doctor - unfortunately she's all I've got until May 21 when I see the new guy.)

The good news is, I know I can rely on DBF in case of emergency. He took me seriously and didn't question the need to call 911. He kept me calm while we were waiting for the medics and when it was all said and done, gave me a big hug when I started to cry. And cheered me up by making me laugh. Because this whole thing freaked me out.

So, a reminder to all of you fellow migraineurs out there: if any new, unexpected or worrisome symptoms crop up - even if they are just new symptoms - please check with your doctor at the very least. When we are dealing with brain issues, it is much better to just have things checked out.

-MJ