Topiramate, Week 1 Thoughts

• The worst seems to be over
• Still tingly: tingly lips, fingers, toes, feet, all the time
• Possibly losing hair (luckily I have lots)
• Change in sense of taste (this is common)
• Brain function improving; I'm not feeling so scattered and slow as I was in the first few days

I definitely will NOT be doubling the dose all at once like the doctor told me to. I will be gradually increasing it over a few weeks. Why would I double it to 200mg when the initial 100mg knocked me on my ass for a week? I basically took the entire week off and won't be doing that again when instead I can increase in 25mg increments. I felt like I was stoned and dozy for 6 days.

I'm concerned about long-term effects. I've heard and read that memory loss becomes an issue over the long term, both with this med and with others. At the same time, memory loss is an issue with ongoing seizures. Which is worse for my brain--ongoing seizures over the years, or ongoing medication over the years? How do I protect my brain from deterioration? This is something I'm going to ask my neuro the next time I see him.

Something else I'm going to ask him: why is it that although HE tells me I can get in to see him sooner if I need to, his receptionist won't let me? There is clearly a disconnect between what he is telling me and what she is telling me. This needs to be resolved because he has given me the expectation that if I need to see him urgently I can, but when I call she tells me I can't see him sooner.

Other miscellaneous thoughts:

Friday: On Friday I was feeling pretty hopeless. This is my life now. I'm going to go through this cycle over and over again... try a new med, hope it's working, think I'm ok for awhile, and then BAM the seizures come back. From talking to other people I've learned that you never really know if you're in the clear, and it can come back at any time. There is the odd person who gets it managed for good, but they seem to be in the minority. Most people struggle with it for life. So, I could be battling this for the rest of my life. Try a new med, be ok for a little while, hope that maybe this time I'll be ok for a few months instead of a few weeks, or maybe I'll luck out and be ok for a few years instead of a few months or a few weeks, and then BAM it will hit again and I'm back to 0 days seizure free. Meanwhile my body and brain are being hammered by the physical impacts of the seizures and the medications. Basically, it sucks. Like other chronic illnesses, it's not going to go away, and the best I can hope for is management. And it frustrates the hell out of me that I may lose my memory and cognitive ability because without those I will not want to live. On Friday, when I was feeling all of this, I had texted a friend for company. He couldn't see me because he was out of town but he suggested that I go for a hike because that always makes me feel better. I said, "not today. Today I would wander off a cliff and not come back." There may come a day when that is actually the case. Some reading this may think that over dramatic, but only if you don't understand me: I would rather die where my heart is happy than live for decades without my mind, or my ability to enjoy life.

My weekend job: Some reading this know that I still have a weekend job. I don't always talk about it because it's kind of lame that a financial advisor has a weekend job. There's this impression that I shouldn't need it, right? The reality is that when you're building a business you need an extra income until the business income stabilizes, and that can sometimes take years, so I have kept an extra income on the side. When this most recent seizure happened, it happened at my weekend job. In fact, that was a good place for it to happen because all the staff there are trained in emergency situations and CPR and took great care of me. And there's another factor to this that had not occurred to me until yesterday. The past year and a half has been utter chaos for me--one challenge after another, between my health and the flood and my unstable income and moving and everything else... my weekend job is actually one of the very few, very stable things in my life. It's always there, and it's like another home, no matter what else is going on for me. So even though I keep saying I'm going to leave it, I never do. Will hang on to it for awhile longer, until everything else settles down enough that I don't need that stability anymore.

Levetiracetam: Once the new med has had a couple of weeks to build up in my system, I'm supposed to reduce (not eliminate) my old med. I'm currently on 3000mg, which is the max allowed. The doctor said to reduce it to 2000mg and then evaluate with my neuro when I see him in may. So I will be doing that over the next few weeks. While part of me is really glad to be reducing this med because it's the one that makes me exhausted and depressed, and it's clearly not working anyway, I also had a moment of anxiety this morning when I was thinking about reducing it. Where did that come from? It's not working and I don't like it, so why am I anxious about reducing it?