migrainesurvivalblog

If at First You Don’t Succeed, Try Again, and Again, and Again…

“With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose.” ~ Dr. Wayne W Dyer

I have seen countless Neurologists over the years, too many to track. In the beginning I was really focused on educating myself. I was strong, I was determined, and I was going to find my “cure”. When I was first properly diagnosed, the treatment plan of choice was medication and more medication. A “cocktail” of preventative and abortive medications that included heavy narcotics.

I was a zombie, the side effects were unbearable, and the narcotics were not helping the pain. In fact, they were only making them worse. Rebound and addiction with narcotic meds plagued me. I was losing hope. I insisted on alternatives to medication, and if a Neurologist didn’t have one, I knew that it was time to divorce that Neurologist and find another. This lasted for several years. I continued to take the medication because I had no other alternative, and I found myself in the ER frequently.

After “doctor shopping” in the greater Kansas City area for several years, and divorcing countless Neurologists, I finally found what I was looking for. When you suffer from chronic pain and migraines, your relationship with your care providers is as important, if not more important, than your personal relationships.

Finally, a Match Made in Heaven

In 2007, I was really starting to unravel. And I was very skeptical of the migraine medical community, because I had found no relief, and I was feeling worse with each passing day. And then it happened; my pain management doctor referred me to a team of Neurologists that were affiliated with his practice, and it just felt right from the very first appointment.

I was referred to Dr. Jeffrey Kaplan, Jenny Ravenscroft, PA, and Amy Dix, PA, with College Park Family Care Specialty Center in Overland Park, KS. They had a philosophy unlike other Neurologists I had seen in the past. It is a team approach to your care. They do IV-infusion therapy in their office a couple times a week to help you break through difficult pain cycles, and allow you to avoid the ER. They are connected with other specialists in the community and can refer you as needed. They don’t prescribe narcotics, and they don’t overmedicate you. They attend conferences to educate themselves of new treatments available to help treat their patients. And, Dr. Kaplan himself suffers from migraines; he understands your pain and is extremely passionate.

As with each new Neurologist I had seen, they had their own preference on which preventative and abortive meds I should be taking. But instead of making drastic changes all at once, it was gradual, so we could actually gauge what changes, if any, were having a positive effect in my care. Unfortunately, we were never very successful in finding meds that added much value, nothing new there. At one point we were in agreement that a “medication holiday” was in order. I weaned myself off of most of my preventative meds, and didn’t feel much different; I certainly didn’t miss them, so it was apparent that they were contributing very little. Don’t get me wrong, the number of prescriptions I was filling monthly was still outrageous, but it was a smaller number than I was accustomed to.

They spent time with me during each scheduled appointment, which would generally last 45 minutes to an hour. During especially challenging times, it was not uncommon for me to see multiple providers during a visit. I had blood tests conducted regularly to check liver and kidney function, vitamin and hormone levels. I had had blood tests run in the past, but not this extensive, or this often. I had bone scans to ensure the effects of the medications were not having a negative effect, something that no other Neurologist had ever suggested in the past. This is especially important for patients taking Topomax, which is a very common medication to prescribe for migraine prevention.

Some of the therapies they persuaded me to try were: a glutten free, dairy free diet, hormone therapy, acupuncture, Botox (where I was pre-treated with IV-infusion therapy to avoid negative side effects that I had experienced in the past), psychology, psychiatry, and adding vitamins to my list of meds. I generally had an appointment every 2-3 months, but during some especially difficult times, they saw me bi-weekly, or monthly to ensure they were doing everything they could to help me find relief and keep me healthy both physically and mentally.

It was trial and error, but they never gave up on me. It was a journey, and they saw me through some of the biggest struggles in my life. We cried together, and just recently during my appointment in October, 2013, we rejoiced together because I am doing so well after the Neurostimulator surgery. My prescriptions were refilled for a year, and my follow up appointment is – wait for it – in a YEAR! Unheard of for someone with chronic pain. The feeling of living in waiting rooms, pharmacies, and ERs no longer plagues me. Opening the mail to manage EOBs and bills from providers and hospitals no longer feels like a second job. And, most importantly, they eventually lead me to Dr. Rosenberg and I am forever grateful for their care and compassion.

stay positive

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One response to “If at First You Don’t Succeed, Try Again, and Again, and Again…

  1. Judy Brinkman says:

    I think–at least I hope–you know I’ve always considered you to be pretty amazing with enviable talents (and skin, and hair) a knack for attracting people, and beauty that goes ‘way beneath the surface. I knew you were suffering. But I had no idea except on a very few occasions about the devastating extent to which you were suffering, nor the shocking number of years of which you were robbed. After reading your blog (which, btw, makes me proud) I hold you in even higher esteem. My God, Stephanie. When I think of all the years we worked together and how you were able to push through the fog and pain, and most of the time nobody was any the wiser. . . well, it both saddens and humbles me. You are a strong female warrior. I truly rejoice in your victory; it’s actually lifted a weight that I didn’t even realize I was carrying around.
    “If we had no winter, Spring would not be so pleasant.” Charlotte Bronte.
    Here’s wishing you a long and happy Spring.

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