I don’t know how many of you have experience with Topamax, or know anything about it, but it also goes by another name: Stupomax or something like it. And I am walking, living proof of that (once again). It has this lovely side effect of making you forget what you were thinking about, you basically always have everything “on the tip of your tongue”. (And in my case I also have a crazy case of tingly fingers, I don’t even think thing lyrics describes it….)
I have tried Topamax once before, when I was in university, but I had to go off it for the exact same reason. School and not being able to find words don’t mix well together. But now, I have figured I really don’t have to use my brain too much more taking care of a one year old. Well, to some extent that is true, but at the same time I do notice it and it drives me nuts. My husband notices. He knows it is the meds. At first he was really confused, now we laugh about it.
Sometimes though I really do feel like the biggest idiot. I was always big with words, I was always the one using the crazy , complicated, fancy ones, in perfectly thought out sentences. And now it is down to “Where is the thing we use for that thing, you know?”.
It is not only that, I also have hard time keeping my thoughts on track. For example while getting ready I will start with one thing, forget what I was doing, or wanted to do next and so on… really sad and funny at the same time. The thing is the Topamax is helping and I really am not doing much.
I really don’t know if I should stick with it or not. All I know is that I don’t have many other options when it comes to preventive medication for migraines.
Couple of years ago I have discovered that I have what we now call a Rathke’s Cleft cyst on my pituitary gland. It is 3 mm big. We came across it by accident. I have finally found a good endocrinologist for my adrenal insufficiency and she requested all of my scans. And I have had quite a few brain MRIs because of my migraines (and CTs and who knows what) along with scans and X-rays of pretty much every single part of my body.
The call came pretty quickly. The secretary asked me if I could come in for an appointment the next day, during which the doctor explained that while it is nothing serious she would like me to have another MRIS of my pituitary gland within a week. At this point I was wishing for a bottle of Pepto Bismol.
That MRI did confirm that there is something 3 mm big, fluid filled on my pituitary gland. It has been there for a couple of years and no radiologist has ever bothered to notice, how sad. It makes me wonder what else they have missed or what is the point of even having these investigations if they are not even looking at the scans….
After reading up on Rathke’s Cleft cysts all it pretty much explained all of my symptoms that have been bothering me for years so I have decided to ask around about the option of having it removed.
After meeting with a group of specialists I was told that it cannot be causing my symptoms and no one would ever operate on such a small cyst. And that was it. But I was told that it is crucial for me to have a yearly MRI scans to observe it.
To tell you the truth my feelings are beyond mixed. So it is crucial to see if it is not growing, because then it will be soon soooo easy to operate, but they won’t touch it now even though it is pretty much half of my pituitary gland. And I might not have a medical degree (although I have about 80% of the courses done), but when about 50% of your pituitary gland is occupied by a foreign body and you are experiencing symptoms linked to pituitary gland problems…… calm blue ocean, just breathe through it. I know that in the US these operations are done, most likely because of the way insurance works. Our “free” Canadian insurance just doesn’t want to pay for it…