Even though my body has been cooperating recently, and I’ve been able to do a lot more, I haven’t been “healthy.” I’m still experiencing pain, taking a slightly slower period of time to recover than an “average” person, and having to deal with some other aspects of my chronic illnesses. Even though I was able to walk around on Mt Evans and I enjoyed a car trip and short hike with my husband to look at the fall colors in the mountains, I’ve been having some struggles. Continue reading
After a few weeks of dealing with increasing side effects, I am now saying goodbye to my Topamax. I didn’t actually realize how many side effects I was truly dealing with until I had my neurology appointment yesterday, and the appointment ended up freaking me out a little bit. Now that I know how many side effects I was actually experiencing, I really wish I had gone in quite a bit earlier, but at least I finally got in. However, I’m terrified about coming off the Topamax at all, because I’m scared my migraines will come back with the debilitating daily frequency I was experiencing before I got put on it.
So what side effect made me finally call my neurologist? Uncontrollable muscle twitching in my eyelid that was so intense it was blurring my vision:
View this post on Instagram
This crazy eyelid twitching thing became quite troubling. It was getting quite frequent, lasting longer and longer each time, and it is so strong it actually makes my vision go blurry in that eye. I decided to go to the pharmacist for a medication review, because I figured even though none of my meds were new it was probably one of them. Only one possible culprit, the one I'd suspected: Topomax. Time to call my neurologist... (There will be a post about this later.) #muscletwitching #uncontrollablespasm #sideeffects #spoonie #spoonielife #scarysideeffects
We’ve pretty much all had muscle twitches in our eyelids, right? Usually, it only happens to me when I’m tired. Sometimes, it’ll happen just because, but it doesn’t happen very often. Well, I took this video because it started happening A LOT! This was the third day it had happened in a row. This was about the sixth time in those three days, and this was after my shower… where it had been happening for most of my shower. Thankfully, it stopped very shortly after I got dressed. But I went straight to the pharmacist and had them do a medication review. The only medication that caused muscle twitching was Topamax, and it also had a lot of eye problem side effects (scarily enough). The next day it twitched for about three or four hours straight, then it also twitched for most of the evening. Thankfully, the last two or three days I’ve had a break from the twitching (it’s actually gotten painful now).
My entire body feels like it has a migraine. I’m in so much pain today. My back is STILL shot. I thought after Pilates yesterday, my back would feel better, but I can’t seem to get ahead of this. My fibro pain is almost always first prominent in my hips, so I’m pretty sure that is why I’m just stuck in this cycle. The daily migraine also hit REALLY early today, and I was struck down by about 11am, when I woke up at 10am. Ugh. I have been lying on the couch, with the room dark and the TV on VERY quiet just because my ADHD makes me really bored if I’m not doing anything at all. I finally had to call Dan at work because the waves of pain were too much, and then came to the realization I absolutely had to take Tramadol and Excedrin (an hour apart for my poor stomach). I had buttered noodles and Ensure for lunch, and my stomach is still killing me despite Zofran. No idea if it’s the medication or the migraine or the pain or a combination of everything or something completely different. I can barely think and I feel horrendous. I’m so sick of lying on the couch. I’m so sick of headaches.
Oh man, I can hardly believe it… Stuff is over. My body has been on high for the last several weeks and my calendar is suddenly EMPTY. Mom left this morning, and I went to Verizon this afternoon to get the stuff with my replacement phone figured out. But then all I had to do the rest of today was to get my replacement phone setup! Yay!
However, since I’ve been on high for so long, my body doesn’t want to decompress. I have crazy knots everywhere, and I have a crazy intense “forgetting everything” type of feeling. And migraines. Ugh. I had one that was pretty bad when Dan got home today, that hit quickly, and then the Excedrin either wore off after two hours or I got hit by a second one… either way, ugh. Plus, stomach issues. Hopefully, however, after a few more days of actually resting, my body will actually believe me that nothing is urgent and come out of the “emergency” stage.
Tomorrow, I’m going to read! I’m also going to get my allergy shots and drop off my old phone at the post office and have my individual appointment with Joleen. But mostly, I’m going to relax and just read 🙂 It’ll be fantastic!
Yesterday was absolutely exhausting. I slept horribly because of nerves, so I was already exhausted when I woke up to get to my 9:50am appointment. Well, and some of that was due to my odd inability to adjust to daylight savings time (for those that don’t know, in spring we move our clocks forward one hour, and in fall we move them back one hour… not every state does it, and it’s an antiquated concept we just haven’t abandoned)… normally, I adjust just fine, which is why I say it’s an “odd inability.” At 9:50am, I had my neurology appointment, then at 3:30pm I had an appointment with my ENT. In between the appointments, Dan and I went to Sam’s Club for some prescriptions and garden stuff. The ENT was really behind, so I actually didn’t leave until 5pm. Needless to say, after that, I was so exhausted I didn’t do anything at all the rest of the day.
On to the neurology stuff, the real reason I know ya’ll are reading this post 😛
First, he listened to all my complaints and asked some basic questions. Then he pulled up the MRIs and showed them to Dan and I. MRIs are SO COOL!!! It was so interesting getting to see what was happening inside of me and what I looked like in so many different layers. He showed us the brain one (from top to bottom and then from side to side). My brain is 100% normal! This is fantastic news. My headaches are also not due to Chiari malformation, which is a condition where part of the brain is protruding from the skull into the spinal canal, thankfully. Then, he moved on to the scan of my neck. Click here for the results
Here’s a collection of good quotes about living as a young adult with chronic health issues.
So, in the first part I covered the illnesses that I was diagnosed with (or knowingly suffered from) before I turned 18. After graduating high school in California, I moved to Colorado to begin college (August 2008). It didn’t take long for my health to get all out of whack. I ended up having ovarian cyst issues in March 2009, which ultimately ended with surgery in June 2009 to remove a large and stubborn cyst. Thankfully, the cyst problem doesn’t appear to be chronic. However, I ended up getting diagnosed with several other invisible illnesses, which are explained below in rough order of diagnosis. From oldest to most recent, this post will cover: migraines, plantar fasciitis, and fibromyalgia.