Worst MIgraine Week in Years

So the last week has been hellish. For the last 18 days or so I lowered my Topamax dose to 275mg, so I was expecting some migraines, but nothing like this. For the past 7 straight days, Saturday to Friday, I have had the worst migraine I've had in years. I've only been able to break it with narcotics. Seeing as I have had to work, I have been a mess, working in a darkened office, drinking coffee and downing Advil all day. :( I'm sure my liver has appreciated me. But it is all the fault of the Rite Aid in my neighborhood that incorrectly filled my Rx. So I had to argue with them for days before they admitted they made a mistake and gave me the correct meds. So I'm finally on the mend and hoping that the botox will start taking effect soon. I am going back and forth about when to go down on my Topamax again. I don't want to go through anymore migraines like this last week. I also am thinking I should maybe wait until I am feeling the effects of the Botox. So maybe I will wait another week until I go down to 250. Thoughts?

My First Botox

So yesterday was my first Botox injection. I was a little anxious going in. Less for the procedure, and more for the high hopes I have for the results. I have been very lucky in that my insurance company is covering the cost of the Botox vial, otherwise I would not be doing this. The cost is extremely prohibitive. I didn't actually expect them to cover it, as I have had issues with them in the past only covering half of my neurologist visits (she is out-of-network but I have an in and out of network plan). I live in New York, which is a double edged sword. I am blessed to have access to some of the most talented neurologists in the field, but they are also some of the most expensive. I self-pay for my visits ($300 a pop). When I asked about Botox it was more in passing, not thinking my insurance would ever cover such an "extravagance". But my neuro submitted all the paperwork and they shipped the $800 vial straight to my doctor.

There was still the $600 injection appointment. When I called and explained my situation, I learned that the other doctor in the practice accepted my insurance. He could see me for the Botox appointment. I wouldn't have to pay anything. It would all be covered. I actually started to cry when I hung up the phone.

And yesterday was the big day. It was more painful than I thought it would be. I got the injections all across my brow line, near my temples, and the back of my neck on both the right and left sides. I am not a fan of needles, and having a large one pricking my face and head over and over was not my idea of a good time. But, if it gets rid of my HAs I will do it again, any day of the week. It was not overly painful, except I had a migraine at the time so my muscles were extremely sore. My neuro said that the Botox should start to take effect in one week or so, and he had me set up a follow-up for a month from now. So we will see what happens.

A little history

So this is my first post on my new blog. I have suffered from migraines for the last 11 years since I was sixteen years old. I have experimented with more migraines treatments than I can remember. When I was in high school I saw a neurologist who prescribed me a library of drugs trying to find something that would work. Fiorinal, Fioricet, Elavil , Prozac, Druact (which was pulled off the market later), all kinds of Triptans and amitritalines. I don't even remember them all.

When I went off to college I saw a better neurologist and went on anti-convulsants. First depakote (and along with it the blood tests and the serious weight gain). It worked for a while, but i had to up my dose eventually and change the formulation. Then it just stopped working. Then the summer before my senior year (2003) I switched to a combination of Topamax and imiprimine. It was a blessing and a curse.

I lost 60 pounds from the nausea and inability to eat while starting Topamax, but I felt foggy, and doped up. I was taking summer classes and had serious problems with word grasping. It frustrated me especially as I had always prided myself on being well-spoken in class and in life. Now I was having a hard time remembering names and everyday words.

I've been on Topamax for 5 and 1/2 years and I still have issues with word grasping. I am on 300 mg and I've switched to Verapamil 120 mg twice a day. But I am anxious to get off the Topamax. My HAs have gotten much better in the last year and a half. I attribute this mostly to getting off birth control. In college I had thought that using a monophasic birth control would help in controlling my hormones, but seeing as my HAs would get so severe around my period, my latest neurologist suggested that I try going off birth control to flush the hormones from my body. It has been an overwhelming success. It has been successful in that now instead of having a HA 1-2x per week I only have them during the one week a month of my period and then occasionally.

I still have to avoid all trigger foods (chocolate, chocolate, coffee, citrus, red wine, aged cheeses, the normal things) and live my life like I have migraines. I have a serious aversion to strong smells (esp. cigarette smoke), loud noises and all that. But my goal now is to try and get off of the Topamax. I hate being on it. I hate grasping for my words, and I don't like being on the medication. I eventually want to have kids, and being on Topamax isn't and option. So I've chosen to try Botox. I want to try to use it to help me get off the Topamax. I am hoping and praying it works.