Here's my full report...
What the Topamax seems to be helping with:
Frequency of the actual migraines, the nausea, and all of that fun
Scotomas are not like they were
Lattices and geometric overlays aren't as common- however, they are still
provoked as easily as before if I see strong geometric patterns
In that category… fortifications are not like they were...
I had 2 minutes of no snow- perfect vision. Thought I'd have a heart attack
from the shock.
On an interesting note, it actually took me a little while to notice the negative scotomas were gone. I just stopped thinking about stuff that wasn't there. Odd to comprehend. Most of my others scotomas looked very much like the one on cover on the Richard Grossinger migraine aura book, but mine were generally smaller and more frequently in the periphery, I had them all the time, and they would slowly move from here to there and morph in shape… those are pretty much gone.
What the Topamax is NOT helping with:
Visual snow… it's the same, if not actually worse
Palinopsia- as before, if not actually worse
Tinnitus, same
Diplopia for things in my near vision, same
General photosensitivity, same
Derealization ickiness, same
Halos around things/ ghosting/ whatever that is called, same
Letters still vibrate when I read
Flat surfaces still appear to undulate (I am starting to wonder if this is an artifact of the visual snow itself)
Vertigo and motion sickness seem the same
I still misjudge sizes of objects (depth off, small seems big, big seems small, etc).
Oh, and I'm still walking into walls, because they still go at funny
angles... good times
What is worse:
The parasthesias. I had these all the time before, and they would worsen along with the visual symptoms if I got tired or ran a fever, or before an actual migraine. These are bad all the time now and have moved from annoying to downright uncomfortable. This is particularly bad on the heels of my feet and the palms of my hand. I also feel them on my face most of the time, and I used to only have that rarely.
I still have periods where I get the hint of a feeling like I'm going to get
a migraine, but then I don't get one. So, I'll start to feel withdrawn, need to turn the lights off, feel hints of my usual migraine prodrome stuff (I
get the munchies
, but say only to 20% of its normal strength. Perhaps this is
attributable to the dampening of the migraine activity as a whole… its not gone, its just dampened.
So, I pulled the study by Lampl et al 2004, where they addressed the use of topiramate (Topamax) in preventing frequency of migraine aura. They had 12 patients and found no significant effects. Personally, I find fault with their design. When you are looking for a rare effect- a change of once in a month- you need way more than 12 people times 3 sampling months to detect that effect (even using nonparametric statistics… they don't solve all the sins of small sample size). For the flip side of this, see my 2 minutes of no visual snow. Can I infer this is due to me being on topiramate? Its really hard to say. Two minutes out of thousands. A tiny effect in a sea of time. Anyway, Lampl et al discuss some of the mechanisms by which topiramate works and why they think lamotrigine works better. I went ahead and pulled the 2 papers on lamotrigine and migraine aura. One of them has many patients, some of them with extended auras, and 75% of the patients had a decreased incidence of migraine headache. I think I'm going for lamotrigine next. This is sounding like more of a winner. Plus, it doesn't make you stupid for a month. I've got to see the seizure guy and then back to the headache lady, and then we'll see about the switch.
If anyone wants these papers, let me know, I can email them.

