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?

Topiramate, Day 1

After my frustrated post and seemingly unprovoked seizure on the weekend, I decided I needed to talk to my neuro sooner than May. Called the office (again... third time since December...) and they again told me they cannot get me in any sooner, and that I'm still on the cancellation list. I said that I'm not going to make it until May, my meds are not working, and I need something now. I asked if I should go to the hospital and see a neuro there; the receptionist said yes, if I can't wait, to go to the hospital.

Given that VGH is the best hospital in town and that they have (had?) an epilepsy clinic on site, I figured if I was going to go to an ER, it may as well be that one. So I took a book and my phone charger and headed for VGH. Sat in the outer waiting room, then the inner waiting room, then was moved in to a bed with a curtain, and waited... finally a doctor came to talk to me. I told him why I was there... that my meds aren't working, I'm still having seizures, I'm still getting severe depression, and that my own neuro won't see me any sooner than May. He said that usually if you have a neurologist then the ER ones won't see you, but he agreed that it sounded like a legit case, so he'd call over. I waited some more. Finally a neurologist came to see me (a woman!). She was really nice and was the first neurologist I've met who was actually curious about my experiences with my partials and generalized seizures. She asked lots of questions about what they feel like, my triggers, my meds, etc. She ran through the regular neuro tests, checked my eyes (said I have "beautiful pupils"). She asked me more questions in that one visit than my own neuro has EVER asked me. She agreed that it was good that I came in, and said she would check with her supervisor about changing my meds. Then she disappeared for so long that I thought she had forgotten about me. I waited and waited, and finally she returned... with three other neurologists! One was clearly the boss, and the others seemed to be in training. He ran through a lot of the same questions again.

Then he started talking about adding another medication to the Levetiracetam that I'm already taking. At first he suggested Valproic Acid, which is a well-established med and I've heard of it, but it can cause weight gain. I said yes, so does the one I'm on. I asked about the one that causes weight loss. I said that I know that is a stupid reason to choose one over the other, but I've already gained 30lb since this started and since we're just doing trial and error anyway, can I try the loss one instead? He said that's not a problem at all. This one is called Topiramate, and the reason it causes weight loss is that it apparently suppresses appetite. Of course it has a whole slough of other side effects too, but all the seizure meds do so that's neither here nor there. It's a crap shoot no matter which one I take.

He told me to start it right away at a half dose for a week, then a full dose, then decrease the levetiracetam (but I'll stay on both). So I started it last night.

And today I felt like shit all day.

The best word is woozy. Buzzed. Literally buzzing... like my body is vibrating. And my brain isn't quite functioning. But that's supposed to get better over time.

If I am sitting/laying down, I feel better, but if I'm up and about I feel worse. So I postponed my afternoon client meeting and hopefully will be ok for tomorrow's meetings. Have also had two very intense partials today (and three yesterday) so clearly that part hasn't been affected yet (but it takes time for the meds to start working, apparently).

Anyway.... I'm now into the combo-meds stage of the experimentation. This is more common than you'd think. And while the Topiramate has a whack of side effects, it does also get good ratings for efficacy, so I'm hopeful it will do the trick.  Wish me luck!

Frustration.

I've just started the second cycle of progresterone cream.

When I started it a month ago, I noticed a difference almost immediately--within a few days I was feeling better... more energy, better moods, and no symptoms. No partials since end of January (the week I had 14 partials over 5 days). I thought I was good to go.

Today I was sitting on a couch watching tv, and felt as though a mild partial was coming on. I woke up an hour later. I thought I had just fallen asleep on the couch... I didn't realize I had had a seizure but the people I was with witnessed it and told me (thankfully they didn't call the ambulance! Note to friends and family... don't call the ambulance unless I'm either injured or the seizure lasts more than a few minutes).

So... now what. That was only three months between generalized seizures (the previous ones were 6 months apart). And I had NO symptoms until it happened. No warning, have been feeling fine, until today.

And now I feel fine, apart from a slight headache. Not foggy and wiped out like I did with the previous ones. I actually think it was milder than the other ones because it didn't take hours for my brain to clear this time.

So.... wtf?!

And I still can't see the neuro until May.