I'm SO sleepy lately, it's hard to focus on "me" and to have any clarity on anything. SUPER FRUSTRATING! My headaches are definitely better now. I now have definite pain free moments. YAY!! I am hopeful that the next step will be feeling more sharp and awake!

On a personal note, I have been having a blast spending christmas with family. I always forget and therefore get to experience "like new", just how wild and different personalities everyone in my extended family brings. Competition, Talkative, Silly, Serious, Quiet, Loud, Attention seeking, Attention dodging, Geeky, Wild, Image centered etc, etc... Whirlwind of what?! :)

I am exploring lots of other options and I'm making progress narrowing down causes. I have two alternate headache specialists lined up for appointments in the future. This way I will learn more theories besides "pop a magic pill." I just finished a sleep test. This should rule out (or in) any sleep disorders contributing to my morning headaches and tiredness. And yes, it's hard to sleep in a sleep lab :D Finally, I am seeing a spinal therapist to further correct my spine since my shunt tubing wraps tightly around the side of my neck. Apparently, there are many nerves in the neck and spine that can cause fatigue and headaches when not aligned. 

I am confident I have the right general path. I just need to see it through.

As far as my symptoms go, I am better on the headaches, and now feeling sleepy ALL the time. That is really pissing me off. I am SO tired of feeling tired. I can get work done, since I can power through it for other people, but when it comes to me time, I just "want" to fall asleep. 

In a nut shell, I am neither better nor worse. Just different.

I am stronger now, basically over the hospital. I am starting to get back into dance classes, taking half a hip hop class here and there. Yay fun! 

On the symptoms side, I'm now mostly getting a chronic fatigue type feeling. Like I want to fall asleep all the time. It's kind of a new issue for me. I'm still getting the low level headaches, but no longer getting the severe headaches. To be honest, I wish I could trade back. The tiredness is really holding me back and trapping me a bit. I would swap the tiredness for occasional severe pain if I could. I can zen-work with pain. Tiredness is hard to power through when all I want to do is pass out...

I've finished researching the medication the headache specialists recommended at UCLA. They recommended I take small doses of Nortriptyline which is an antidepressant that has been found to help relax muscles in small dose. I'm always skeptical of medications, and with good reason. There are always side effects. 

Although the doctors say there are usually only mild side effects, it looks to me there are quite a few that I'd like to avoid risking altogether such as dependency, too sleepy or not sleepy, and crazy dreaming. (Those interested in more see here: http://www.askapatient.com/viewrating.asp?drug=73553&name=NORTRIPTYLINE%20HCL)

So, I've decided to forgo the medication and seek other treatments such as, but not limited to, massage therapy or herbal natural remedies. Also, I'm looking into other possible causes for my headaches, such as a sleeping disorder or sinus infection. I will be meeting with a bunch of other doctors and getting a sleep test done.

If I had to guess, I'd put my money on a combination on my head pressure and a sleeping disorder as being the cause. And the blending is making it difficult to diagnose. I am making progress on narrowing down the answer, and I know it will come! I just don't know when...

Good thing I am blessed with a ton of patience :)

I am much healthier and stronger now. I am eating regularly, and starting to get outside and exercise again. I can't wait to take dance classes again! Went to UCLA medical to meet with Dr. Yamasaki and discuss possible other causes of headaches. She was cheerful and peppy, and made me do all kinds of silly tests like tapping knees, checking memory, and seeing if I knew what year it was. I thought today was the 12th, but otherwise passed all the tests including remembering blue \ horse \ cook as three words given to me at the start. Fun image! After much consultation with other doctors in the center, she returned with a gaggle of doctors to suggest that I have a muscle tension headache. I will be taking super small does of an antidepresant which has the effect of relaxing brain muscles over time. Takes about 3 to 6 months to determine whether or not it is working. And if it works, then it's done, and I don't need to take the meds anymore. Super cool and promising. I'm always wary of taking medication, and will be researching this one thoroughly before I put it in my mouth. On the plus side, it will cure my severe depression :D

I have gotten much stronger and can now walk by myself easy. I'm used to taking 7 dance classes a week, so my "slowness" has been maddening. Psyched to be strengthening quickly! I'm now back in my apartment. I forgot how good it makes me feel to see at the things I've built and all the items I've earned through personal growth.

The extreme flu symptoms, such as chills and hot flashes, have left. Yay! Starting to eat food regularly again. Watching entirely too much TV. It's been great to have Mom and Dad visiting me. I love seeing them <3 p="p">

A quick update on my situation. I have left the hospital after a 2 day stay and I'm recouping in a nearby hotel. My body is completely shot from the no sleep or food that comes with tricky surgeries. Like the flu: chills, hot, weak, sleepy, in pain, and moments of adrenaline "peppiness." I've managed to eat a bit without throwing it all up. I am getting stronger slowly but surely.

Now for the results. While in the hospital, they drilled a super small hole in my skull to install a tiny long tube to a pressure monitor. After monitoring me for a day and night, they found that my inter cranial pressure is within normal parameters. This means that my shunt is working properly. Good news / bad news. They did not need to install new full body shunt tubing, which would have been a very taxing and dangerous surgery. Bad news, my headaches are due to something else. Good news, they do a ton of scans before surgery, so the headaches are not due to anything major life threatening such as a cancer. They have recommended me a headache specialist. And I will be meeting with many experts to collect a range of opinions.

Emotionally, I am pissed. I have a hard time emotionally believing this is true. I was looking forward to getting everything replaced. I was confident I was going to survive the great danger and the long recovery process. I was convinced the issue was my brain's pressure.

Intellectually, I am accepting. Dr. Bergsnieder is one of the best, if not the best in the world. When I share I am working with Bergsnieder with other great neurosurgeons I have worked with, I am met with looks of wonder, jealousy, and excitement. "Oh My god! He's the guru!" I trust his judgement and diagnoses on this explanation of my headaches.

I remain wary that my shunt tubing is old, brittle and tight. I suspect it will come detracted eventually. When that happens, then I will likely get everything replaced. And medical procedures will have advanced even more, and my risks will be less. For example, 7 years ago, installing a pressure monitor was so huge and bulky that you might as well do whole body surgery instead. Today, pressure monitors are risky, yes, but not nearly so.

New format! I have deleted old posts, and I will be using this blog to update friends and family on my recovery status. I will try to post frequently, but I suggest you check every other week at the most. Much love, -JT