Georgetown CFS Study: Day 3 (Complications)

Disclaimer: Today is November 15 (very early). I am retroactively uploading it under the correct date of the actual events.

Day three started out fine but quickly deteriorated.

Almost from the moment I woke up I started experiencing terrible headaches and nausea that only felt better when I was able to lie down.

My worst headache was so bad that I started to cry.

At first my headaches seemed very much like a migraine headache because of my light sensitivity, so they gave me migraine medication. They also gave me phenergan for the nausea and something else to help me sleep.

My reaction to the the phenergan was horrible. It was administered through my IV port and immediately started slurring my speech and causing extreme drowsiness. Also, my whole body started twitching very oddly (my arms and legs were twisting and I made weird faces). The whole experience was extremely unpleasant to say the least. I can add that to my list of medications to avoid...

I eventually fell asleep but woke up with a headache. The migraine medication did not seem to help. The headache and nausea were only made worse by my sitting, standing, or moving.

After taking a complete history of the past 24 hours since the lumbar puncture, they concluded that my headaches seemed like spinal headaches. However, they wanted to bring in an outside professional -- an anasthesiologist who often treated spinal headaches -- to determine independently if what I was having was actually a spinal headache.

She determined that I was likely having a spinal headache.

This was NOT news I wanted to hear. The treatment for a spinal headache is a procedure called an epidural blood patch. I really did NOT want to have another giant needle stuck in my spine at that point.

I honestly did not know what to do. They said I could go on complete bed rest for up to two weeks and see if I got better, or I could try the blood patch. If the blood patch worked, then my headaches would disappear almost instantly. I really did not want another poke in the back, but I also did not want to be completely bedridden for that long.

After asking the doctors for their opinions, I decided to go with the blood patch because the possible instant gratification of an absent headache was more appealing than the wait-and-see-for-weeks approach. I also didn't want to be out of commission for that long away from home.

They did the blood patch and it was more painful than the lumbar puncture itself. Bleh. Still, I did start feeling better very quickly, perhaps in less than 30 minutes? Wow!

I am now on mandatory bed rest at my parents home in DC and have had to postpone my flight back to Houston. Kenny has not had any complications, but he has insisted in staying with me until I could fly back. If all goes according to plan and my back cooperates with me, we will be flying home on Tuesday.

If you're wondering why I'm up in the middle of the night writing on my blog, it's because drinking lots of caffeine is part of my treatment plan. I think the caffeine is supposed to help with improving the cerebrospinal fluid pressure. Caffeine also has the side-effect of keeping me up even when I'm tired. After I finish my last Coke tomorrow, I don't plan to have any more caffeine if I feel ok.

Anyway, I've left out a lot of details which I'll include in another post, but I just wanted to keep everyone updated with the current news.

I will end this post with a (slightly edited) copy of the email I sent my immediate supervisor (whom I like and respect) regarding my current condition:

I thought it only fair that I explain in greater detail my sudden, upcoming absence from the office. Wednesday through Friday I participated in medical research at Georgetown University Hospital that directly involves my primary chronic illness, Chronic Fatigue and Immune Dysfunction Syndrome. The risk of participating in the research study is low with only 7% of the participants experiencing any sort of complications. Apparently, seven is my "lucky" number. (See http://clinicaltrials.gov/ct2/show/NCT00810329 for the research project.)

The most invasive part of the research involved a lumbar puncture (a.k.a. spinal tap) and the removal of 20cc of cerebral spinal fluid on Thursday afternoon. I went through the procedure fine and felt ok until Friday when my condition started deteriorating pretty quickly. I was leaking cerebral spinal fluid from my spine, so I had to have an emergency procedure called a blood patch to correct the leak. According to the doctors, I was not at risk for any major complications from the leak, but the head pain, dizziness, and nausea involved from the spinal leak was incapacitating.

I am still in some pain from the two separate punctures but am now recovering at my parents' house in Washington, DC. I have been advised by one of the the doctors on my case to stay in DC a bit longer rather than stress my body by flying back home tomorrow morning. I hope to be back at work on Wednesday, but it may be a good idea to have any major duties reassigned for the rest of the week to other people because I have become extremely weak and am limited in my endurance and ability to move.

Currently, I am on complete bed rest. I am not allowed to lift anything or bend, turn, or twist my body because I am at risk for another spinal leak. I'm not even allowed to bend over a pick up a pen that I might have dropped on the floor. Standing and sitting are painful (I am writing to you while lying down on a couch). I will be requesting wheelchair escort service at the airports for my departure from DC and arrival in Texas.

I should be back to normal Monday, November 23 and be able to resume normal duties, but the rest of this week will need to be light duties only. On the upside, other than feeling physically poor, I am mentally doing well. I do not have any regrets in participating in this research because it is my hope something good will come of this research. It's also nice seeing my mom and dad.

Anyway, that's it for now. I will continue to respond to email in between naps, as I am so woefully behind, but speaking on the phone is a bit difficult for me for the time being. By the way, I have all sorts of medical documentation if anyone needs proof of my recent activities.
See you soon.

Alyson

Today's Activities (Nov 13): research guinea pig (at Georgetown). Today's Most Annoying Symptoms: severe headache, severe nausea, exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry.

Mood (10 is best):5
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 9 (before blood patch) 5 after