Saturday, December 12, 2009

Long Term Med Change

I had a good visit with my doctor this week. However, the day of my appointment started off with many wake ups during the night due to the storms; you name it, we had it. There was snowing, sleeting and raining throughout the night and into the day. Luckily I left plenty early for my visit as it took much longer to get to her office then it should have because of this weather, getting stuck behind eight snow plows strung across the major highway and much flooding.

Of course this helped the grumblings to go on in my head; lack of sleep, icky weather, the pleasant drive. I really got so much accomplished during my visit. I let her know my prescription plan drama. My idea of a medication to replace Topamax was met with a real partnering manner and this is also a weight neutral drug option. Yey. I got the name and number of a pediatric neurologist which she wrote down for me. When she was writing out all of my prescriptions, I was even able to get her to write out a new prescription for an epipen which is expiring this month.

I'm nervous about coming off of Topamax as I've been on it for over three years and I have had a pretty positive experience with it. There are things I have always questioned about Topamax and if its affects were actually the Topamax or not. I guess I'll find out the answers to those questions now and save a lot of money in the meantime.

There are a couple of other things that make me anxious about coming off of Topamax. I have heard of some people who came off of Topamax when it was working for them and when they tried to go back on it, it didn't work for them any longer. I am also concerned because the last time I came off of it, I was put on a different preventative that didn't work at all. My neurologist at the time didn't believe me and reluctantly switched me back to Topamax at my request. At that point in time, I did not know my neuro did not believe me that the new med wasn't working. I found out that fact later. I didn't know enough about Migraine disease back then and hadn't learned to be strong yet.

My current doctor mentioned that she could write a letter to my insurance company which may help me get a reduced rate for Topamax. I didn't even have to bring this up! This is the same thing that some of you had told me about too. However, I think I want to try the other med first despite my worries, but I will keep this in my pocket. To drag past doctor ghosts back again, I once had a doctor who had a sign posted in their office that basically said they would not have any interactions with our insurance companies for any transactions and especially for something like this. That still blows my mind and then my current doctor was volunteering to help out and get involved. What a difference in service on many different levels!

I did fall down during my visit when I asked about her comment during the last visit about generic Topiramate and how if it only works for a very small number of her patients, if she or it ever gets reported to the FDA. I draw a complete blank as to what she said. Total no recall except that she did answer me. I didn't write any of her answers down this time and I don't have a tape recorder. I've gone out to the FDA site a few times myself and one of these times I'll figure out how to report my side effects. I have to.

When I called my SIL to let her know about the new Pediatric Neurologist's name, she invited me to go to the appointment with her! Of course I was excited and honored to be asked while accepting the offer. I let her know some days I could not take off from work, but I would definitely want to go if she wants me there.

I really want what's best for my niece and I think my SIL feels a little lost when dealing with Migraines. She has a better idea about them after I gave her a copy of Teri Robert's Living Well With Migraine Disease and Headaches book, but she feels she still doesn't know what to do for them for her daughter.

They have gone to some other neurologists, but I don't think those visits went very well and I think that's one reason my SIL wants me there. I've tried gently guiding her, but she starts to get lost since there are so many different things to know about Migraines and it probably helps having personal experience with them.

I don't know what to expect from a pediatric visit as I'm sure my reactions would be much different for my niece than if I were going for me. I have to do what I can for her, but children are a whole new world. My doctor was telling me that children react very differently to medications as when adults take the same med.

Anyway, I think I got a lot out of this last doctor's visit. I hope this medication change goes as smooth as it can. I already feel the effects of titrating down on the Topamax. I know how long it will take to switch over and start upping the new med. I can do this yet again and endure the change while working. I have to...


WinnyNinny PooPoo said...

Hoping your new meds are effective. Glad your niece has someone advocating for her!!

MigrainePuppet said...

Thanks Winny. I want to be there for my niece. I want to do whatever I can to make her Migraines easier for her.