Wednesday, September 30, 2009

Crazy Walks Back In

Crazy walked back into the Siminski household. Well, crazy has been in here for quite some time. If you look back on my posts the past two months or so (actually, this entire meningioma journey!) you'll notice three distinct themes: crying, pain and anxiety.

Turns out I WASN'T supposed to be weeping uncontrollably every day and having anxiety attacks. I didn't know that's what they were at the time.

So......after a horrible flight to South Carolina where I met my mom with sobs, I continued crying the entire trip. It was bad, it was scary. I couldn't do anything. I couldn't eat. I was sleeping all the time. Everything made me cry. It scared me and my mom. So bad that on the Monday I was in S.C., my mom had to call Kevin. He called the doctors. Turns out I had a very, very bad emotional and physical side effect of Keppra XR, which had been prescribed (for various reasons) just about a month before. Well, the timing of the South Carolina trip coincided with the drug fully loaded into my system. I guess it happens to about 1 in 5 patients on this drug. I think the generic keppra was doing the exact same thing, but just not quite to the dramatic extent that the extended release was. (Hence, my anxiety - although I didn't know that it was that - during the entire radiation treatment.)

It was so bad, that my mom had to escort me back to Indiana on Tuesday (my original departure date). She was able to get on the same flight as me, thank goodness. Within 72 hours, my mood, appetite, etc. were dramatically better. But it wasn't without yet another ER trip to get fluids in me because the withdrawal from the drug was rough, rough, rough. Geez! There was basically no taper. One night I had my usual dose. The next night half dose. Then I was done with it. I had to be. It was bad news.

Now, the same time I started XR, I also started Lyrica for some slight nerve pain I had been having. Wouldn't you know it, about the same time I went through the Keppra Crazies, I started developing debilitating muscle pain. I thought I just pulled a muscle and was tense from just the sheer physical and emotional toll I had been through the last week. The pain didn't go away with time, muscle relaxers or some pain meds. That made me suspicious....

I'm now tapering to see if I'm developing an extremely RARE side effect of Lyrica. It's exactly the same feeling I had when I was on Remicade and Humira (which both gave me the lovely side effect of drug-induced lupus).

This is potentially the SIXTH pharmaceutical drug that has given me such bad side effects, I've had to stop it.

Ah, the fun never ends. If I can just get all these medication issues fixed, I will be one happy camper. But seriously, the difference (just ask Kevin) between me the last 6 months and the me now is like night and day.

PS: Understandably I have postponed the trip to Boston to see the endocrinologists until the beginning of 2010. I've got other stuff to worry about!


  1. It's so unfair. All you're doing is trying to help yourself, and the stupid drugs are just jerking you around. Unbelievable.
    I despise having anxiety attacks. I get to the point of hyperventilation and faintness. The really bad ones are when people say, "Try to calm down". All that does is make it worse, and I end up crying, which causes panic. Such a crappy hand to be dealt.

  2. Ah Jenny, I'm so sorry. It really sucks that the things that are supposed to be making you feel better are making you feel worse.