A Good Day?

I’m wondering if today will be a good day. I know that’s silly but it’s something I have to worry about. Since adding Clobazam to my regimen I’ve been tired. I sleep fitfully and it’s not a pretty thing. NOW, now I get to add another dose of Clobazam (in the morning) take away 1/2 of my Keppra intake (HURRAH!) and keep my Vimpat levels the same. Today, I’ll be either a walking zombie, asleep, or possibly perfectly OK. I’m not counting on that last one though.

I do feel sorry for my coworkers, however. When things get like this, I stop making sense and my work is so much harder to keep up with. My train of thought is never right where it’s supposed to be, and I take more notes than I ought to. It’s not to say I don’t accomplish my goals… It’s just I should be able to accomplish more than that.

New drug

Clobazam is a fun thing. It’s like being drunk in pill form. When I first take it, it’s like being black out drunk. Approximately 1hr after taking it, it takes everything I have to stay awake. The next morning? I’m buzzed. My nose tingles and I’m a bit giggly. Right now I’m on 10mg in the evening, next week I start 10 mg twice per day. That’s when it’ll get interesting. The whole not being able to make it to work thing. We’ll see how that goes.

Otherwise, the drug isn’t awful. I’m not seeing some of the initial side effects like I have with many others. Tiredness, on a whole is not a miserable thing to suffer through. Drunkeness? Well people spend lots of money for that sort of thing. I’m still having seizures. I’d like to say they’ve slowed down some, but not yet. That’s fairly normal for adding a new drug. Nothing stabilizes quickly.

I do know, however, it’s not a cure. It’ll only last, at best, a few years. Maybe I’ll be one of the lucky few that this helps until we figure out something else to do.

As always, remember to donate. You can find the information to your right on this page. We need more treatment options. It’s not fair for anyone in this world to have to suffer through “well, being miserable is better than having a seizure”. That’s not a good way to live.

Illegal Drugs!

My drugs from Canada are here. In order to prevent the pills from getting seized at customs, it had a nice letter written by my doctor…

To whom it may concern:
Ms. J is being followed by the Johns Hopkins Department of Neurology for the diagnosis of intractable epilepsy – complex partial seizures. She is currently being managed with medications. She has failed more than eight medications and is currently on Keppra and Vimpat. Despite these medications she is still having break through seizures. I am prescribing clobazam to her medication regime.

Any further questions yadayadayada

Dr B

Apparently the major loophole we’re jumping through is that the FDA & customs allow drugs through if they’re unavailable in the US and shown to be of major assistance to those unlucky sods who have nothing else available to them. There are several pieces of paper all confirming the same that this drug ISN’T available in the US and I really really need it.

I’ve taken dose 1 and I’ve no idea how I’ll react to it. I guess I’ll tell you about that tomorrow.

  • Meg
  • Reid B. Kimball

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