Friday, February 10, 2012

Migraine Doctor Journey

No matter how challenging a doctor visit had been, I like to look at each of my doctors along my journey as a growing and learning experience. As I started to learn more about Migraines, it got easier to move on to new doctors; until my last doctor.

When I went to my first doctor, I was still very much trained by my mom; doctors knew everything! You know, they took an oath and could cure almost anything. They would listen to everything we said and use their years’ worth of schooling and experiences to give us the best treatment.

Before I even made an appointment with my first neurologist, I tried to cram the basics I thought I was supposed to know and do before I went. I was kind of surprised that she never even looked at the diary I had kept or anything else I brought to that first appointment as I even delayed going to the doctor so I could have enough data for her to look through, but I guessed she knew what she was doing because after all, she was a doctor and had a specialty in neurology. Me, I had never even searched for anything on the internet before I realized that my lifelong headaches could really be more than just daily headaches.

I have to tell you, it took a while to get used to the fact that I could finish a prescription and not be healed! Anyway, I thought my first prescription was helping, but my doctor wanted to change it at our first six week follow up visit, so it was changed. We tried different prescriptions along the way and even retried others. On some occasions, we actually attempted combinations of medications.

At the point where I read and learned more about needing to give a medication enough time to really take effect; I was on a prescription I probably should have come off of at that time. However, I followed doctor’s orders and ended up increasing the dosage. By my next visit, I practically had to beg her to come off of the med as my tremors were so bad I had to drink with two hands. She reluctantly switched me to another medication. This time, I was put on an anti-anxiety medication.

After giving it a try, it was hard to convince her that that the anti-anxiety med did nothing for my Migraines and that they were actually feeling much worse. I knew I couldn’t keep going on with taking this medication, but I think she just wanted to get rid of me so she actually changed my prescription again.

This was the point that I started to learn that mom is not always right and I can actually fire a doctor! If you think about it, I’m paying this doctor for a service and I didn’t exactly feel I was getting the proper care I was paying for. I understand it may take a while to find the right medication to help with Migraines, but she didn’t seem to be listening to me, working with me or what was really important to me, she didn’t seem to believe things I would tell her and I felt like she was fighting against me; she was not working with me. I was going to have to find another doctor. Doctors don’t know everything, they don’t always look at what you bring with you to your appointment, and they don’t know all things medical even if you want them to or if they’re a specialist in that field.

Since I’m usually a planner, I didn’t leave right away and still tried to figure out ways to help my Migraines. I never planned on staying on medications forever and had started reading more about the elimination diet. I mentioned it during my next doctor’s visit when I was basically told it would be a waste of my time. Being the hardheaded person I am and having learned all of these doctor lessons already, I decided I would do it anyway!

The elimination diet turned out to be one of the best things I have done for my Migraines as it had decreased them dramatically. I charted everything when I started the elimination diet and it showed all of these differences very clearly and succinctly.

I brought this paperwork with me during my last visit with this doctor. She actually looked at it. She also got up and sat right next to me on my side of her desk as I went through my charts. This is when she told me that she thought my Migraines were totally because of stress which instantly explained why she didn’t want to take me off of the anti-anxiety med despite what I said. It really was the most pleasant visit I had with her and not because it was my last.

It was way past the time I should have moved on, but I learned so many things that I won’t regret the time I spent spinning my wheels either. I will never tolerate another doctor like her. They were tough lessons for hardheaded me that I really needed to learn firsthand.

It was so easy to fire the next neurologist. I only saw him once. He was so pompous and knew me much better than I knew myself. Just ask him! He knew that my trying a medication for the third time would be a charm for my Migraines. He actually told me that I ‘could keep doing what I was doing or retry that medication’. Silly me, I thought I was doing something different by going to see him. Can you believe he told me that I kept too much detail in my Migraine diary? I wish I kept that much detail now. Also during our appointment, he was so good about putting down things I had already tried to help with my Migraines, but really offered nothing new except retrying the old medication that did not help; even for this third time.

I ended up going to some odds and ends doctors for a little while including a primary care doctor. I learned a huge lesson with this PCP. He really is a good doctor who knows his own limitations. Although I try to stay out of medications, I think I talked him into trying a medication combination despite him not being comfortable with mixing meds. I knew I was beyond this doctor’s limits when I started having different side effects and could tell he didn’t know where to go with me. I ended up moving onto my last neurologist from there.

It was almost funny as my last neurologist took one look at the medication combination I was on when I came in for my first visit. She listed the possible side effects of the combination at the same time I was going through the same side effects I was feeling. I was amazed that she could look at the meds and describe all of my side effects. I stayed with this last neurologist the longest and probably would have started with her sooner if her name wasn’t so hard to spell as I had heard good things about her for a long time, but just couldn’t locate her.

She was by far the best doctor I had seen for my Migraines and helped to bring me from chronic Migraines to borderline chronic. This doctor always partnered with me and usually went along with so many of the crazy things or ideas I wanted try. She worked with me in figuring out my companies FMLA policies which was not an easy task. It turns out that my company needs specific wording from the doctor whenever the recertification paperwork is submitted.

From the very beginning, she would always look at the paperwork I brought with me during my visits, she would write out prescriptions in funny ways so it would save me hundreds of dollars with my insurance company, she kept me on one of my prescriptions that wasn’t helping with my Migraines, but was providing some relief with another genetic condition I have and you can really start to see the different ways she would work with me.

Sure, there were some things she would do that would frustrate me, but I’m sure I would frustrate her in our partnership too. We had a really good rapport, but I also didn’t want to make the mistake by pushing her to do something she was not comfortable with like I felt I did with my previous doctor. Although she never said it, sometimes I felt like she was running out of ideas near the end of our partnership and didn’t always know what to do with me. I really liked the way we worked together, but my Migraines started increasing again just before she dropped my insurance.

That was the final push for me to move on to a true Migraine specialist who is only two hours from my home. I know I am going to miss the rapport I had with her and hope I can build a portion of this type of relationship with my new doctor. My old doctor was great in giving me everything I needed to get ready for the Migraine specialist and I have recommended her for those I know who need a local Migraine doctor.

So far, I’ve had one appointment with my new doctor. He seems to want to partner with me and to bring his years of Migraine research and expertise to the table so we can make the choice together about what we feel is the best path to take for my treatment. There are more rules and regulations around a big office that I need to get used to, not that I’m ever going to like it, but I have the confidence in the doctor that we will move in the right direction and start to see an improvement soon enough.

This has been my Migraine doctor journey with some of the lessons I have learned along the way. I wish mom was right and every doctor could cure every condition. Wouldn’t that be nice?


Migrainista said...

I know exactly what you're talking about - My mom passed down the same misconception to me that doctors were the experts. They knew everything and were never wrong. I too had to learn the hard way. But what great lessons :) Great post!

MigrainePuppet said...

Thanks, Migrainista! It's funny when I try to talk to mom about doctors now. She will 'let' me do what I need to do with my doctors, but her doctors are all of the best and can't be questioned! Although then she invited me along for two one week trips for a procedure that my father went through. Parents! :^)