I haven’t made a post in quite awhile. It has been a crazy summer. I’ve moved three times in the past 5 months! It was so not planned that way, but when you are on a limited income it can be kind of hard to find and keep a decent place to live. So I finally have a great apartment with an awesome roommate and we just got internet. I feel human again finally having the internet back. What does that say about humans?
I’m going to mostly talk about symptoms today, but at a later time I’d like to share my perspective on some of the problems with the health care system, in terms of lack access to appropriate treatment for patients with EDS and Chiari Malformation, as well as for other patients with debilitating and painful conditions.
It was a rough night last night. It was hard to write in my symptom journal (which I try to update regularly) when I was in all that pain, but I think it’s important to keep a record of these things. Here is a snapshot of some of what I was dealing with:
before bed took 300mg Gabapentin, 25mg Quetiapine
11 pm:
pain in neck, left side, extremely tight muscles
burning pain traveling up back of head
headache, frontal
feeling of pressure in back
frontal headache, worsened with coughing
strange beeping in ears
lots of twitching
pretty bad headache
sore legs
lower back
pain and twitching is making sleep difficult
12:30pm:
really intense back and leg and abdomen pain
almost indescribable
burning pulling aching fire
really quite painful
pain is a 10.. 11.. 12
pressure in tailbone/bowel area
feels like have to urinate and
move bowels but can’t do either
impossible to sleep
took 10mg of Flexeril
pain wore off gradually
asleep by aprx. 2am
The headache and neck pain issues are a daily occurrence, and so is the leg and lower back pain, but I don’t think it’s ever been quite so intense as last night. I’ve had some weird episodes, but this was pretty crazy. I couldn’t get comfortable in any position. I couldn’t even stay still or stop whimpering. I eventually was able to do some deep breathing, and it seemed to help a little. I am glad I didn’t wake up my roommate. I’m not sure if the medication helped, or if it just wore off gradually.
I have been taking videos of my “twitches”. I’m not sure what they are, or why they happen. I still haven’t managed to get a doctor to look at these videos. I put them on CD and brought them to my last neurologist appointment, but the guy’s computer was a dinosaur (and so was he kinda), and he couldn’t play the videos. He told me most people show him on their iphone. Am I the only one left who doesn’t have an iphone?
Anyway, I’ll include a ink. They tend to start off as slow jerks and then progress to a sort of shaking and convulsing sort of thing. Maybe someone out there will know what these are and how to control them better. I don’t think my current medications are quite cutting it. People have told me it can be a little hard to watch. It’s my reality, but don’t watch it if you think it might bother you.
Thanks for listening, and I hope everyone is having a great day, and I hope all my Chiari and EDS buddies are hanging in there and doing okay. The one wonderful thing about all of this is that I have met some amazing people who are dealing with similar issues. It is not nearly so bad when you realize you're not alone.
