Time for a medical update. I know it has been a good few months, but until recently there was nothing really to report. I’ve had good days, bad days and worse days but nothing noteworthy. However, since I met with a brand new neurologist things have gotten a little more interesting.
I used a little different philosophy this time around, when finding a neurologist. As you may recall I had my old neuro, Dr. Jerry leave, and have been looking for someone since. I had that horrible episode with Dr. A as I wrote about in My Blind Date, and I even went back to Dr. Jerry’s partner which was almost as bad. I needed to change my entire way of going about this. That is when I remembered something another Chiari patient said on Facebook. She said that she went out and found someone just out of medical school, and trained them herself on our illness. So that is exactly what I set out to do. I found a Neurologist that was only out of school for 4 years and made an appointment. Of course I had to wait a long 3 months before I could see her, but some things are worth the wait.
I’m not saying Dr. Z is perfect but she definitely has potential. She listened, she knew what Chiari was and had some great ideas. First thing she decided to do, was order a Lumbar Puncture to test my CSF pressure. Dr. Oro wanted this done but I couldn’t get anyone to actually order this. Dr. Z also said there were a few medications I had not yet tried, that she thought might help. She also wanted to get me sleeping again. Then we would meet in 2 months. Perfect first visit, in my opinion.
The Lumbar Puncture was scheduled 4 days later and was one of the most amazing experiences of my life. I’ve had one done before to test for MS, and ended up getting a spinal headache, and needing a blood patch. It was horrible. To say the least, I was not looking forward to this. That all changed when my nurse came out to get me. While going through the questions, and explanation of the procedure she told me that she also has Chiari. What? Another person in UTAH that has Chiari?! I was ecstatic. Okay not that I was happy this beautiful young lady had to have this crap of a condition but, I instantly felt not so alone. We went on to talk another 10 min about our respective lives, then she got me ready for the doctor to come in. His name was Dr. Jackson and he was super nice, and very competent. He also had a connection to me that was almost as cool. He used to play basketball for Stanford and he ended up losing to Utah in the Sweet 16. He talked to me about sports the entire procedure. It was all around pretty damn cool. My Chiari friend/nurse took care of me during the 45 min observation time after and we continued talking. It was astonishing. We had so much in common. I know that shouldn’t come as a surprise but, I have never ever met anyone in Utah that has Chiari. I know they exist, but they all must be hiding. I plan on writing soon about how it feels to be isolated, so I wont get into that now. However, she was wonderful, and I feel stupid I didn’t even catch her name, or even ask her for her number so we could go out to lunch or something. Who knows maybe she will see this blog and contact me. Hey we all gotta dream right? 😉
After I recovered from my Lumbar Puncture, not getting more than a moderate spinal headache, I started my medication. I guess I should say I started my second medication. Since the day of the appointment with Dr. Z, I was taking Trazadone for sleep. It is technically an anti-depressant, but Dr. Z likes to prescribe it for sleep. She says it is much more effective and safe than Ambien which I was taking before. The Trazadone works great and I have even been feeling refreshed in the mornings. I haven’t felt that for years. It didn’t take long for my body to get used to the Trazadone so, following the LP, I started the migraine preventative she wanted me to try. It is called Depokote, and like the Topamax I was on for years, it is an anti-seizure. Dr. Z says that it is very effective, but there are some risk it may damage your liver. Because of this I needed to take a blood test to ensure my liver could take it and then be tested again after a month. I didn’t make it that far. Heck, I barely lasted a week on it. I felt severely ill from the very first dose. Initially I figured I just needed some time to adjust and the side effects would go away but 5 days later they were even worse. I was dizzy, nauseous, exhausted, feeling faint, my headaches were more frequent and when I went to see Dr. Ken for a routine visit my blood pressure had plummeted. I felt worse than any flu. I ended up calling Dr. Z and telling her what was going on, and she immediately took me off of it. The next day I felt great. It was remarkable the difference. We meet in June, and I expect she will know what went wrong then, and most likely have a different medication to try.
I love the feeling of knowing I have someone working on making me feel the best I can. I have been without a good neurologist for so long, I forgot how much just having someone put your well-being first, feels like. I’m not delusional, I know the day may come where Dr. Z doesn’t meet my expectations, or she may give up like so many before her, but I am gonna take what I can get for now.