Monday, June 2, 2014

Adverse Reactions - Topamax Day 10


Topamax/Topirimate are the tiniest pills pictured here.
Small but powerful. The biggest are Keppra.
The yellow medium sized is Klonopin.
All three are AEDs - anti-seizure medications.
I also take a multivitamin and aspirin daily.
Treatment for nonconvulsive Epilepsy with migraines
with Chronic Trainsient Ischemia
& other brain weirdness (need more studies)

[warning: probably contains foul language]

Everyone addresses Epilepsy in their own way.

You can get down with your bad self (while hopefully not falling down on anything hard or ending up in the ER if you have THAT kind of Epilepsy), wear a different funny Epilepsy t-shirt every day of your life, get a big fat EPILEPSY SUCKS tattoo, make your disease a part of your identity, embrace it, seize it, whatever. But learn some way to cope with what will likely be a long and bumpy ride. There is no magic wand.

This is officially day 10 on my latest Neurologist prescribed "let's try this drug regimen". The newest addition to my antiseizure arsenal is Topamax. I don't get the fancy designer version but the generic "equivalent" Topiramate. It is prescribed primarily for seizures, as well as Migraines, and off label for curbing binge eating and drinking and possibly to make you carry on like a complete brainless airhead (some report that it makes them forgetful, reduces cognitive function, etc.). It's nickname is Dopamax. Oh Emm Effing Gee.

So far, I don't, you know, like, feel, like, totally, feel dumb or anything. Ya know?

I discussed this drug briefly yesterday at the end of my last post. See? Cognitive function still functioning over here.

The most common side effects of TOPAMAX® include: tingling in arms and legs, loss of appetite, nausea, taste change, diarrhea, weight loss, nervousness, and upper respiratory tract infection. Report any side effect that bothers you or that does not go away. 

So here's the FUN part of these meds - do the benefits outweigh the side effects? OK, then keep taking the medication. You don't magically get a new medication that has zero side effects - there is no such thing. Even those side effects that the label says CONTACT YOUR DOCTOR IMMEDIATELY IF, even some of those - are you willing to tough it out or do you want to pick what is behind door number 3? Are your SURE? Are you really SURE? 

My last drug in the mix which did NOT control my seizures had the odd side effect of making my oral mucosa thin (that's in my mouth, dude) and my mouth would just randomly fill with blood. In line at the grocery store? Blaaahhhhd! Talking to someone? Blaaahhhd! Gotta go, keeping mouth tightly shut while turning into a freaking vampire. I told my Neurologist that it was ok that the stuff left an acrid taste in my mouth for 3 hours regardless of how much water I drank, it was ok that I couldn't fall asleep all night but I couldn't live as 1960s B-movie Count Dracula just for kicks for a drug that did nothing to improve my life.

So far my side effects on Topirimate have included loss of appetite, taste change and weight loss.

Yesssss!!!! 

My only complaint about the loss of appetite and weight loss is going to be if it goes away. Are you kidding me?! I THINK I can figure out a way to ingest more calories and gain weight if it becomes an issue. I recently spent six months on an ultra low carb diet trying to fight the side effects of weight gain from other seizure medications. I was good. I was strict. I never cheated. I ate less than 20 grams of carbs a day every day (A woman following a conventional 1,200 calorie diet would be advised to eat 135 to 195 grams of carbs per day. A slice of bread contains 36 grams of carbs). The scale didn't budge. I tried to convince myself that I was building muscle mass. Haha. At least I wasn't gaining more weight, but damn, Big Pharma, you still owe me minus 30 lbs.

Taste change. This is THE WEIRDEST THING. There is actually a very boring to 99.9% of the world scientific paper that explains the mechanism that causes this to occur with this particular drug. Everything carbonated is now inedible. Too bad I can't drive because y'all would have a designated driver for Microbrewery nights. (Note: somebody remind me to bring a juice box sized wine to that high school reunion desert kegger at the end of June.)
Protip:
Put your pills for the day in a travel sized pill container.
Mine is an old hotel gift shop mini Excedrin bottle. Slap all of the sticky RX labels from your pharmacy
receipts directly on the bottle. Now your name and all of your pills names and dosages are in one portable place.

I haven't had my more common (daily) seizures since I started this new medication. I haven't had a clusterheadache/suicide migraine in 6 days and I have not had a loss of consciousness seizure (which I normally only have twice a year or so) in 4 days. It's not magic but it's a start.


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