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:
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).
It’s now officially fall! Yesterday was the autumnal equinox, which marks the first official day of fall here in the northern hemisphere.
One of my friends, CL, shared an interesting article on her Facebook about why fall is the only season that has two names (one thing I know I have personally wondered about many times). I thought it was an interesting, and not too terribly long, read:
Do you have a preference for what you call this season? I use both fall and autumn about equally. Sometimes I’ll even use both in the same sentence! I do really love the name Autumn, as well.
Is this your favorite season? Even if it isn’t your favorite season, what is your favorite part of the season? I absolutely love watching the trees change (so gorgeous!), the smells, the crunch of the leaves underfoot, the feeling of the crisp breeze, and hoodies!!! I also love hot tea and cozy blankets, but I get to keep those all through winter too 😉
For those of you not following my Instagram (which, why not?), I did get in to see the hand specialist on the 16th! It was much sooner than I expected to be able to see them.
After a physical exam and some x-rays, it was determined that my thumb is actually … okay. Well, it’s probably recurring tendonitis or something like that. He said I could do an MRI if I wanted, but since my thumb was starting to feel better already I figured it probably wouldn’t show anything (though the next time it flares up badly I’m going to request one). My other options were to do nothing, request specific occupational therapy or physical therapy, or steroid injections. I didn’t like any of those options so I was trying to be more specific about how I can’t even write because it hurts too much.
Don’t get me wrong, I am not just blindly wanting you to follow “Big Pharma” down the rabbit hole of taking more drugs and needing drugs to counteract the side effects of those drugs. Actually, I am all for all sorts of different combinations of lifestyles. If you love taking pharmaceuticals, then go take your pharmaceuticals and I’m so happy that they make you feel better! If you love taking supplements, then please go take your supplements and enjoy your life! If you love combining the two, then go do that too and enjoy feeling better! Woot for feeling better and managing our symptoms the best way we know how!!!
Anyway. Now that that is over, here we go. The point of the post 😛
Some people don’t realize that supplements can carry just as many risks as pharmaceuticals can. In fact, I would argue that, because of the state of “common knowledge” they are more dangerous. Why do I say that? Simply because people read an “all natural” label and are willing to pop it into their mouth without learning anything else about it… leading to potentially deadly consequences.
Wait, did I just say deadly?
Yes, yes I did. Continue reading
I have been a member of a chronic illness blogging group for a little while now, and they are fantastic. Just recently, I have been given the opportunity to try out a product and write a sponsored post for it! I just wanted to let you know that I’d be getting in to doing that so that you weren’t suddenly blindsided by this new thing appearing on my blog.
I’m extremely excited by this opportunity to take the next step in doing something that I love doing, and to also try out something that may really help me and could possibly help some of you as well!
(And yes, I’m still working on the colonoscopy post series I mentioned a while back. I had to stop as it was a little too traumatic to work on so close to the event. August was really busy, but I’m going to be working on it this next week and I’m hoping to have it published quite soon.)
Right now, we’re (my GI and I) experimenting with treatment for small intestine bacterial overgrowth – aka SIBO. I am going to be taking Xifaxan for two weeks, and hopefully the delayed gastric emptying will improve. We’re also going the motility improve.
He decided to just do the treatment instead of testing first because he didn’t like how many I’ve been thru already, and apparently the SIBO test isn’t very accurate. Xifaxan isn’t supposed to be absorbed into your system much at all, so there really isn’t supposed to be too many side effects, so I decided to just for it. I figure my daily issues are so miserable, I’d rather just try it and hope it’ll help.
So far, I haven’t been too happy: gassy and lots of bathroom trips. My fatigue is also a little wacky, but my period is also poorly timed again. However, my stomach had been marginally better. Hopefully that means it’s been helping.