Tuesday, February 3, 2009

Headaches and Hallucinations

So part of the reason for Kevin starting this blog is that he found the most helpful information while researching meningiomas from other bloggers.  Yes, we want to keep everyone updated, but we also wanted to be a resource for others (and their spouses!) going through the same thing. There is nothing like experiences of others to help understand what one is in for pre- and post-surgery.  So, some of this information may be overkill, but I think others going through this would find it interesting.

HEADACHES: I noticed last week that my headaches were becoming more frequent, especially in early morning and at night in bed.  This is probably attributed to the fact that I was off pretty much all meds except Tylenol, and the previous courses of prednisone had truly worn off.  It seems worse when I'm not sitting upright.  I had been able to manage it, but Monday I hit a wall.

I was up most of the night on Sunday night with a bad, bad headache.  There was no way I was going to make it the next week and a half without something else to manage the pain.  Kevin convinced me that I needed to call the nurse to see if there was anything else they could give me.  I have never been in more pain than I was in Monday morning.  Luckily, they were completely understanding and called in a script for Decadron (anti-swelling, basically a heavy duty steriod) and Vicodin for pain.  Unfortunately, I had to wait the entire day for this to be filled, so I spent most of the day in terrible pain.  AND I had to get my stealth MRI and bloodwork done in prep for surgery.  Luckily that went pretty smoothly.  But since Kevin HAD to be downtown yesterday, I got my friend Laura to take me to my appointments because I didn't trust me driving.  For 3 hours she was with me, so big shout out to her.  I couldn't have done it without her.

Kevin picked up my scripts on his way home about 6:30.  I literally attacked him as soon as he came in the door and took the meds.  It took about 2 hours to fully kick in, but I felt like an entirely new person.  Thank goodness, because I couldn't have stood another day like that.  It was awful.

HALLUCINATIONS: So I finally managed a little bit of sleep on Sunday night/Monday morning and about 5:30 I woke up again.  I must have fallen back asleep soon after, but I had the scariest experience.  I swear I heard men's voices in our bedroom, talking about me.  Then I had a full body shiver, which was just really weird.  Then, I had one of those experiences where I was awake but could not talk, could not move one body part.  I was petrified.  After about a minute, I was able to move.  And I woke Kevin up.  I was freaked out and so was he.  It was all side effects from the Keppra.  And I still was just exhausted.  (I probably was awake for only 6 hours total on Sat.)  Keppra is just really really tough to handle.  I think this is the worst part of the whole ordeal.  

So, combined with my horrible headaches, and this very very scary experience and my total lack of energy and sleepiness from the Keppra, it was time to call in reinforcements.  I called my parents in S. Carolina and told them that they needed to get up here in the next day or so, because I just couldn't handle the roller coaster anymore.  

So, my mom arrived last night and I couldn't be more thankful.  Just having someone with me during the day is comforting, and she's helping with everything.  Cooking, cleaning, you name it. I just don't have the energy to do any of this.  And I don't really feel like cooking because my appetite is pretty weak.  So having someone to make the food is so helpful.  And it takes the pressure off of Kevin.  Big props to Nana Jan!!!

I just hope that all these medications don't cause more side effects.  But I gotta do what I gotta do, and I'm taking it one day at a time.  And most importantly, I don't feel like my head is going to explode anymore.  I can deal with the sleepiness, but I couldn't deal with the pain.

More on Chief Nursing Officer Jan, Kevin and 3 'nursing assistants' (felines Clyde, Chloe and Simona) in an upcoming post!


  1. Jenny this is so crazy! I just want you to know that you have an amazing husband with unmatched courage and strength. I think you knew that, but thought I'd endorse your opinion! Second, you are a very tough woman and I have personally witnessed you overcoming pain and perservering through diseases that keep many down. You have a great history of healing so this should be a walk in the park. I am praying for you, your surgeon, your husband and family!

  2. Sometimes, there's nothing like having your mom around. So glad she can be there with you.