I **was** on 500/day (200am; 300pm) I'm going to reduce my PM dose by 50mg thankfully to see if it helps lighten the sideFX a little bit.
I am also maxed out on Keppra (3000mg) and pretty high on TegXR (1200mg) daily totals.
BID administration for my meds.
Topa was getting to me... I asked my Epileptologist this tuesday if he thought cutting it by 50mg could help reduce the effects, while still maintaining control.
It was a balance issue for me I was chewing over. Between seizure control and the effects of the drug (I consider them elevated over minor, but tollerable). At 500 it had kept my seizures at bay, but my energy had dropped to almost zero, and motivation and being able to get out and perform simple tasks such as shop for food and even pay my bills became a chore. All due to the high dose of Topa.
At lower doses (200 or even 300/day) I could still bike 10 miles. Now I can't even pull 2 miles without feeling exhausted; as if I pulled the 68 mile trek one and a half times. Yes I could bike nearly 70 miles not that long ago.
Is the higher dose worth it? That question isn't even worth asking in my case. It kept my seizure at NO GRAND MALS this last year. only lessers, and a few months seizure free. I was down to ONE per month roughly; a couple months I had two. For the effects I learned to adapt to (mainly the eating) I personally am glad I was put on Topa.
Hi it was my choice to go to topamax. I wanted to lose weight and my doctor said that he would put me on topamax. I have always been on tegretal or tegretal xr. Then I was on tegretal xr and topamax and that didnt agree with me. So recently I came off of the tegretal xr and just was on the topamax. On the 400mg a day.
I have the silent seizures. Where I stare in space and you can talk to me and I ignore you for 30 seconds to a minute. Then I look at you and start talking like you wasnt talking to me. I was just mainly curious what peoples dosage is of topamax if the 400mg was really high or what.
Be warned, others call it dopamax... Why is for how it tends to fog the mind. It seems to slow others down.
I had a couple of the blank mind "episodes" when I was titrating up on Topa, but not after. Once was when typing an email I blanked out, couldn't find my train of thought. I knew where I was, I knew what I was trying to do; just not the exact wording or train of thought I wanted to communicate. It took under a minute to get going again. The second time was on the PHONE! I was able to get out "I'll call back" and hang up. I called back a few minutes later when I was sure I could find my words again. I could not think of words! It may compare to your "stare-offs" in a minor manner...
Topa could also cause confussion when first starting on it. An example my Epileptologist gave was: "a person may put the soap in the fridge rather than the dishwasher". (VERY good example!)
Taste if you have not noticed can be effected for foods.
Some soda's (mainly diets) will seem different
perspiration becomes almost nonexistant
make sure to drink water if you have kidney problem history (water is good for you besides).
I had to learn how to eat all over again. I went almost 2 DAYS without eating and I was not hungry, so the drug appears to do with the appitite section of the mind. I needed to change to snacking DURING the day; and one real meal at night to keep up my food intake.
I also found some food aroma's triggered my eating; in my case it was shrimp.
I guess I'd suggest to anybody reading this read up on your medication when you are starting a new drug. It's amazing how it helps prepare you in advance.
personal history therapy note: Topa has not dropped my weight as Zonegran did (was on it b4 Topa). I had problems with Z, Dilantin, TegXR, and Keppra mix and lost 25% body weight in just over a month (dilantin levels shot through the roof as a result). Had to remove Z and lower Dilantin to level out. (toxic on Dilantin, couldn't walk without a cane)
I dont like plain water. So I drink flavored tea and use splenda. I use a 2qt container and like 5 -7 packets of splenda. And I drink like 1-2 quarts of the 2 qt container a day. I drink alot more now since I increase the topamax now. I dont drink as much diet coke as I use to.
I thank you for all your advice Travis. Its been very helpful. And very grateful.