Saw my Neurologist today and we figured out what to do. But… is it going to work?
I am dropping the Depakote ER to begin using Oxcarbazepine. There’s a “procedure” of getting onto new medication (for seizures). It takes time. It will take the month to get completely on this new one.
The side effects seem very similar to what other seizure medications I have taken.
This Briviact medication that I recently started, I chose to stop. The choices towards this are based (mainly) on the price. Medicare does not cover the price of this very much. Too new for it to be recognized as a medication I need for seizures? Probably. Medications, especially seizure ones, can be prescribed to people for other reasons.
I was also given the chance to have it at an extremely lower price… as a “tester”. OK…. that wouldn’t be too bad. But then I learned that this “testing” only lasts for two years. I would only pay the lower price until the two years are over with. Uhhhhh… I’ll pass. Hate to say it, but I only want to change to this one if I can take it for a hopefully a longer amount of time.
The other reason…. It is too tiny of a pill to believe (my opinion) that there will not be any problems with anything. It expected to work completely without a doubt. To me, I honestly think that I have taken SO MANY different pills in my life for seizures, but not this tiny.
Now, this Depakote ER that I still take is still working. I hate some of the side-effects that I’ve had for (about) a decade, but still it still works for controlling seizures.
Lets go a bit further with what we have today. So, I got onto the new Briviact easily within a couple days. That was easy. Next, I would need to get off the Depakote ER. That would need to take several weeks to finish this. I was down to “half as much” of the Depakote ER, before choosing to not go with Briviact. Getting off (or back on) a Depakote ER pill takes time. I’ve done this so many times in my life, too.
What have I done with this Depakote ER, that I should (maybe) be getting back on?? I’ve made this decision to NOT go back up on the Depakote ER. I’ll just (for now) not go down any further.
So! Where are we now? I have another Neurologist appointment soon. The two of us will discuss the NEXT medication to do, and give that one a try.
I saw my new Neurologist yesterday. With all this COVID-19, I didn’t do the medication change several months ago. But now… I have decided (after “understanding” this COVID-19) to start a medication-change again. I’ll start this in a couple days (this weekend). I’ll have to see how all this is working afterwards. Any of these new meds have all-new side effects and everything changes for me. I’m getting OFF the Depakote ER that causes the increased tremor and inability to speak all the words that I’m thinking of.
So… What is the new one?
After looking this up, I see the main side-effects are…
Drowsy (just like all the others I have ever taken)
Dizziness (just like all the others I have ever taken)
Loss of balance or coordination (just like all the others I have ever taken)
…and a few other things. (nothing new)
One pill in the morning and one pill at night. Then I have to go through the whole process of getting off an old one. I’m not getting off ALL of them. Just changing the Depakote ER.
As long as my entire speaking comes back, the extreme tremor is lost and seizures are controlled, this will work just fine.
This right-arm of mine has recently become more and more drastic in the sense that it shakes incredibly worse. My fingers and my wrist are really bad. It hurts SO MUCH. Before, I would need to hold something to “hold it still”, but now my entire arm hurts from the shaking. This is killing me.
Earlier in my life, I was able to entirely relax my arm (easy at night while sleeping) and it wouldn’t shake “at all”. Now, that doesn’t seem to matter anymore. Then again, at this very moment my arm seems okay when it is entirely relaxed and this “brain of mine” is focused on typing. Today (for once) I am going to “try” and take the time for this ENTIRE DAY to NOT drink my coffee or soda. TRY is the keyword. “try…”
I’ll see what happens with that. So far nothing has changed. Still shakes and hurts.
About a week ago, I was calling over to the hospital to speak with my new Neurologist about the newest medication I’ve been on for awhile. The one thing that I hated with it is that it had to be taken 3x a day.
Well…. one of the side-effects was REALLY kicking in last weekend. Oooohhh…. That thing was making me sooo tired. I’d get up, take pills, eat breakfast, and was so tired that I just had to lay back down. I was OUT. Woke up at noon, took a pill, ate lunch and just had to lay down again! Woke up for dinner…… on and on and on…..
I finally told myself NOT to take anymore Sunday night or Monday morning. Monday, I called over to the office of my new Neurologist and spoke with the nurse about the problems for the weekend. She told me just to stop the Morning and Noon. Uh, no. I told her that I was wanting to COMPLETELY STOP the pills all-day. She said that was fine. I was only taking them for the reason of stopping the tremor in my right arm and hand. Made it “better”, but the tremor was still there (not as bad as before). If the pills were COMPLETELY getting rid of the tremor in my arm, then I would be concerned with getting off it. I didn’t want to change the med. But I could be just sleeping all day with it EVERYDAY! ARGGGG…..
So, I got completely off that pill and now my right-hand (and arm) has the bad tremor back. It really bothered me when it started coming back. But after a few days, I have just gotten used to it (I guess that’s kinda the way I’d put it). I’ve had this before, so I have gotten used to again.
I was told on the phone that the new Neurologist should call and discuss. That wasn’t happening. So, here’s where I am: The one prescription is removed. Not feeling like I just want to sleep 24 hours a day. Tremor in my arm/hand has returned worse than before.
Other than all that, everything is great again as far as the THINKING and TALKING goes. I can just stay this way until another surgery (someday) would help. That’s where I am.