The Patient Speaks!

Many of us in the migraine community have been fighting for years to have our condition taken seriously. When I began my headache odyssey, I was told by a doctor that many in the medical community viewed migraines as a “little girl’s” problem and that men must buck up, soldier through and never, ever admit that a headache would cause a problem lest they be forever labeled as a “sissy”. Needless to say, the Doc’s comment didn’t help me much other than confirm in my own mind to pursue help. The next few years brought a succession of GP’s, EENT’s, neurologists, dentists for TMJ, chiropractors, allergists, psychiatrists, psychologists, psychotherapists, physical therapists and several other “ists” that I can’t remember. Then there was Mayo Clinic and the Diamond Headache Clinic. Not to mention all the pills, powders, potions, procedures and punctures that came along with the ride. And the X-Rays and the CAT-Scans and the MRI’s and the blood tests and the angiogram and the spinal tap and the arterial biopsy and the bio-feedback and the imagery and the… Those of you who’ve pursued migraine relief for even a short period of time can relate. Then gradually, the medical and pharmaceutical communities took notice of our disease. All of a sudden several clinics popped up specializing in headache or the all inclusive “pain”. Pharmaceutical companies introduced headache specific pain meds both prescription and over the counter or, in my ever humble personal opinion, they rebranded existing meds as pain relief for migraines. Health segments on the national news would include migraine reports. Being a capitalist, I firmly believe that market forces enticed enough doctors and drug companies to invest their time and money in finding relief for us. Unfortunately, this also meant more and more people were having headaches (hence the larger market for remedies). If not more sufferers, then more people were complaining about the pain and seeking medical help as opposed to living with it. All of a sudden, relatively speaking, “headache” became accepted as a more legitament medical complaint and big business.

With all this new attention to giving us sufferers relief, how many of you can raise your hand and shout “Yippee! I am now pain free!” If those I have talked with over the years are any indication, the answer is “not (m)any”. Migraine remains one of the most elusive medical problems to cure. As Siri Hustvedt wrote in the New York Times, “Migraine remains a poorly understood illness.” (http://migraine.blogs.nytimes.com/2008/02/07/?scp=1-b&sq=SIRI+HUSTVEDT&st=nyt) With all the medications doctors have tried on me for prevention (seems like the entire PDR), nothing has provided positive lasting results. Nada. Zero. If I asked for a show of hands for migraineurs with a similar experience as myself, I’d imagine a lot more hands than “pain free” would raise. Indeed, because of my “resistance” to preventative medications (don’t you just love how some in the medical community blame the patient?), I’ve been offered permanent disability. When this happened to me many years ago, I immediately fired the doctor explaining I wanted help to function and be productive, not quit. But now what? What was my game plan now? Where/who do I go now? In my mind I had done it all. I didn’t want to start all over again with a doctor would simply redo all the procedures I had already been through. In my medical travels, I quickly found that each practitioner would have me do the exact same “spool up” as all the rest which, of course, did nothing for my pain relief in the months it took. I wanted HELP. When I asked for pain relief, I was, maybe, offered Tylenol® 3 (sometimes 4) or perhaps Vicodin® (sometimes ES) along with the lectures about how I couldn’t be taking these medications for long. “OK”, I said, “but what long term pain relief?” I would ask. I’d get no response. This was before the internet really took off, so my research was limited to medical books and professionals that would talk to me about long-acting narcotic pain medications. Narcotic! So there was the rub. Ah-ha! Now it all made sense. There were doctors who were personally adverse to narcotic therapy and, if they said that up front, I respected them and their opinion. But it was the ones opposed that would keep bringing me back, charging me, and never quite get to the point where they would “try” it that I had a problem with. Interesting side note: a well respected Indianapolis area hospital has just opened a Headache Center (excellent!) and says right up front in its web page they do not use narcotics (http://www.stvincent.org/about/news/pressrel/SVH-Carmel-Hospital-Opens-Headache-Center.htm). That I can deal with as I know the game plan going in. Then there’s that government regulatory agency factor. Doctors have told me they wouldn’t prescribe a long-acting narcotic even if they knew it was in the patient’s best interest because they don’t want the government “interference”. Sad. Fortunately, in my case, I found a doctor who did their (and my) “due diligence” and prescribed a long-acting pain medication. And yes, it was a narcotic. End result? I got my life back. My family got their husband and dad back.

So, where is this rambling screed going? The good news is: there is positive movement in the migraine world. More options are available. Physicians are taking notice and drug companies are trying to provide good preventatives. The bad news: We have a long way to go and must never forget the personal responsibility we each have in making sure our treatment is appropriate for our own individual needs.

Disclaimer: My only expertise in headache/migraine pain relief is that of a sufferer/patient. I am not a medical doctor nor have any medical training or expertise. Nothing in this article should be taken as medical advice.