reforming healthcare to make pain less invisible

When DBF and I were laid off at the beginning of November, one of our immediate first concerns was continuing to afford treatment for my Chronic Migraines. Any regular reader of my blog knows that I haven't yet found a successful treatment regimen to manage my Migraines, though I have been working hard for several years now.

I was very fortunate at my last job to have very good health insurance coverage. My former employer did not charge employees for the basic level of insurance (which included medical, dental and vision). Our prescription plan was only two-tier. Compared to many other chronic illness patients, I was incredibly fortunate to have such great coverage. Even still, it cost me hundreds of dollars a month out-of-pocket. Now, add the cost of my COBRA coverage, and a month's worth of unemployment checks just barely covers a month's worth of treatment costs.

It's no big secret that healthcare is in dire need of reform. Many of us particularly tied to the medical industry - whether we are healthcare providers, chronic illness patients or caregivers - perked up when soon-to-be President Obama emphasized the need for healthcare reform. Cynicism aside, it's reform our country desperately needs.

Before I go on, I do want to mention the importance of universal, affordable healthcare and an effective "cure" for the shortage of primary care physicians. These topics have been written about extensively across the blogosphere, so I won't dedicate much space to them here, other than to say that they are hugely important and difficult tasks to accomplish.

But, beyond these issues is another that cannot be ignored: effective treatment for chronic pain.

According to Rest Ministries, nearly one in two people in America live with chronic illness, and 96% of illness is invisible. Many of these chronic illnesses come with pain. Pain, by its very nature, is often impossible to ignore, extremely debilitating and invisible to those not experiencing it.

This invisibility is particularly problematic when it comes to medical treatment. A familiar story: a Migraineur who finds herself in Status Migrainous, after 72 hours of pain with no relief, dutifully goes to the ER to get the Migraine broken. She knows the increased risk of Stroke after a prolonged Migraine and, per her doctor's orders, goes to the ER. Despite her doctor's treatment protocol (well documented in her records), she is treated like a drug seeker and sent home without breaking the Migraine.

Unfortunately, it has fallen to Migraine (and other chronic pain patients) to address this problem. Teri Robert, a prominent advocate for Migraineurs, has developed and freely distributed a set of ER forms for Migraine patients, in an attempt to get around the dreaded drug seeker label. Many headache specialists will do what they can to help patients get around this obstacle to the care they desperately need. Yet Migraine support groups are full of stories of poor treatment at the ER.

Let me make it clear that I'm not blaming ER doctors for this very real issue. All too often, drug seekers do go to the ER to get narcotic hits. Because pain is invisible - at least in the case of most chronic illnesses - it's hard to tell just by looking at someone if they are, in fact, experiencing a severe pain flare. The drug addicts, DEA and "War on Drugs" have combined to put chronic pain patients in a difficult position. Doctors are reluctant to prescribe pain medications to patients who legitimately need them; those medications, if prescribed, are often underprescribed; and breakthrough pain is a very real problem that chronic pain patients dread. All too often, that puts us in the hands of ER doctors.

But what if it didn't have to be that way?

I ask the Obama administration to work with the healthcare industry to find a solution to these problems, specifically:

1. Better treatments for Migraines and other chronic pain;
   
2. Appropriate prescribing of existing and new treatments;
   
3. Individual treatment protocols for patients to address breakthrough pain; and
   
4. Access to necessary emergent care for breakthrough pain (and in the case of Migraines, Status Migrainous).

Not being a medical professional, I don't have good solutions to these problems. But I firmly believe that we have an unprecedented opportunity for doctors and patients to work together with the Obama administration to address these problems. More funding of the NIH for research into chronic conditions is an important first step. Beyond that, it is up to all of us with a stake in the medical industry to work together and develop a plan of action.

The skeptical side of me sees this much reform as impossible to achieve. But the optimistic side of me is reaching out to all of you. Patients can't do this alone. Doctors can't do this alone. Nurses can't do this alone. But together, just maybe, yes we can do it.


Be well,
MJ

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.