Saturday, August 6, 2011

Keep Trying

I would say I am getting confused again, but in reality, I know what I should do. My current neurologist has been, by far, the best doctor I have gone to for my Migraines so far, but I don't know if she is the best doctor for my Migraines.

I'm not sure that makes sense, but I keep getting closer to making the decision to move on. I have a really good rapport with my doctor where we can talk about anything. However, sometimes she seems to forget what's important to me from previous visits and will talk nonsense or against things I strongly believe in. I have been building a pro and con list around her which has a lot of items in both columns.

During my visit with her last week, we got on the subject of the elimination diet. If you know me, you will know that I believe in the elimination diet as I do not think I would have found most of my food triggers if I did not do the diet and left it up to discovering the foods that trigger my Migraines. It is not easy to do a full blown elimination diet, but it is the only way I could have ever done it as there are other ways to go about doing the diet too.

I also believe I am especially sensitive about the diet because my first neurologist tried to discourage me from trying the elimination diet by telling me she thought 'it would be a complete waste of my time' and another neurologist told me that 'sometimes you could find too much on the elimination diet'. Both neurologists did not see any value in the diet and let me know it. I started my elimination diet anyway right after talking with my first neurologist and was able to show her what a huge difference the diet made for me at my next, which was also my last visit with her. It was actually the only time I ever felt like she really listened to anything I ever said to her.

During my first visit with my current neurologist, she seemed pleased that I had already completed the elimination diet. Now she keeps saying that she does not believe in it; that she finds the best way to find a food trigger is to notice that it keeps triggering you. She did keep agreeing with me as I explained how I felt the diet could be tricky and that we do need to be careful when adding back a new food while on the diet because we have to be cognizant of other Migraine triggers going on around us too. That these other triggers may interfere with the diet and we may need to reintroduce the new food again at another time. Somehow I think she may have been just appeasing me to some extent too. As I mentioned, I do not think I would have found most of my food triggers without having done the elimination diet the way I did it.

I let her know that the whole reason I brought this subject up was because I had just started looking into tyramine. Honestly, so much of what I had seen in my preliminary research made a lot of sense to me where I feel I need to look into it further. She actually shook her head no insinuating that it would not help. So you know what that means, don't you? I have to do a lot more research around tyramine, decide what I need to do and do it.

I moved on to my next topic from there. I told her that I am very frustrated and running out of ideas. I wanted to know what ideas she had for me. She mentioned a few drugs in one class and botox. I know I am not ready to try botox yet and it really kind of surprised me that she brought it up now plus we had some interesting side conversations around that. We ended up choosing a new medication to try and I know we came up with the decision based on our dialog. Can you see why/how I get so confused about this doctor?

Sometimes it gets so easy to just want to give up on trying to help Migraines because it seems like so many things trigger us and nothing seems to work to prevent them which just leaves us easily discouraged. As tough as it is, we have to remember that we need to keep striving for the help and support we do need. I know how hard this is to do especially during the most frustrating and trying of times. We have to try to keep in mind what we have and what we need to keep working for.

I know for me, no matter how old my kids get, I have always enjoyed them at whatever age they are and the grown ups they are turning into. They are my inspiration to keep going. Tomorrow is going to be a real tough day and one of those days you pray not to get a Migraine. I wish my Migraines were under better control right now, but I have to work through the day as best I can and use this as a motivator to keep trying to find that magic bullet.

I will be dropping my son off at school, but worse, I will then go to my cousin's to say goodbye to her son who will not make it back to school for his sophomore year of college. I don't know how I am going to face my cousin as there is nothing anyone can do for her. No matter how tough Migraines are, things can always be worse and having a Migraine during tough times does not help which is why we must work hard to make them as controllable as we can. We have to be ready to help others who may need us without worrying all of the time about our Migraines getting in the way.

I am believing my best chance for better managing my Migraines is to go to a real Migraine specialist. I know I am real lucky in that the Migraine specialist I would want to go to is only the next state over and two hours from my home. Other Migraineurs need to drive a full day or even fly to their Migraine specialist. Regardless, we need to do what we can to manage our Migraines and I am still working through a couple of issues before making the choice that will be best for me.



Diana Lee said...

Yup, I think just the process of writing this post brought you to your answer: try the migraine specialist. The balance that has worked for me is to keep a relationship with a somewhat less than ideal local neuro because of the practical need to have care in my area, but also work with a migraine specialist I have to travel to. I would classify my local neuro as being very similar to your current neuro. Good in many ways, but unnecessarily rigid in his thinking about options and treatments. But knowledgeable regarding those treatments and willing to get me the care I ask for during an intractable migraine (ie IV therapy in the hospital infusion center). I would be screwed if I gave up that relationship entirely, I think.

I'll be interested to hear how it goes. I'm sure since I know you IRL now I know where you're going, and I truly think it will be a good thing for you. :)

MigrainePuppet said...

Thanks, Diana. The description of your local neuro sounds so much like my current neuro.

What's really frustrating too is that I know she received good training during her fellowship. She actually did that under the doctor we met when I got to know you IRL.

I'm sure you can guess where I would go. It was nice when we got together as I was able to ask others lots of questions about the doctor's office which is one of my biggest concerns. It's been a very hectic week and won't get better until after our office move next weekend. I will be back on track soon.