Tag Archives: chronically ill

Goodbye, Topamax

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.

Side Effects

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).

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Experimenting With Treatment

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.

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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.

Stomach Issues Return

Normally after vacations, due to all the restaurant and junk food, I am horribly stopped up.

For some reason, this time, I now have diarrhea. It’s not “running to the restroom every few hours” bad, but the last three days have all had multiple loose stools. Today is the worst of it so far. But the frequency is way off. I’ve only gone about twice each the last two days, which is weird.

My stomach though feels horrid. It feels like I’ve been hit in the lower abdomen by a baseball bat and my colon has been set on fire. No idea what triggered this.

I do not have a fever.

I’m glad I see my GI on the 31st. Hopefully it doesn’t get any worse, and I really hope it doesn’t last that long…

Minimal Bodily Cooperation, But Still Cause For Gratitude

My body seemed to level back out again, weight wise. When I picked Dan up from the airport, I was still nauseous but it was dinner time and I really wanted a French dip sandwich from Mimi’s Cafe. Instead of only eating half (like usual), I ate about 3/4 of it and half of my fruit bowl. The next day I managed to eat most of my Qdoba nachos for lunch too!

The rest of the weekend I’ve been eating lighter, but I did go back up those three pounds. The nausea is a little more manageable, but still pretty bad. We’ll see what happens this week. At least the rapid weight loss seems to have stopped for now – that was unnerving.

I hope you all had a good weekend.

Body, What Are You Doing?

I’ve been exhausted this week. Completely exhausted. It’s understandable: the weekend was pretty crazy and Dan has been in Florida all week for a rocket launch (which means I’ve been doing more normal at the house).

But, the confusion comes from something else. We got a new scale because we realized our old one was broken. I’ve been weighing myself regularly (daily) because I lost a bunch of weight before the colonoscopy so I’m curious. Last week, I was holding steady.

This week?

I’ve lost one pound PER DAY.

That’s not normal.

Now, I’m still at a healthy weight. My BMI is still in the normal range (high normal, actually). I wanted to lose a bit of weight actually, so I’m not that upset about it being gone, I’m just worried about the speed and sudden change.

The weirdest part is that I don’t actually look much different physically. I’ve lost 3-4 pounds in 4 days and look pretty much exactly the same. Though we’ll see if Dan thinks so.

I’m going to start keeping track of my calorie intake and daily activities to see if maybe there is just a crazy imbalance I’m unaware of, out if I need to get to my doctor.

But seriously, body, what are you doing now?

Nausea and Dysautonomia

Today, Dysautonomia International shared an article to their Facebook  about nausea and vomiting, and how the two don’t always go hand in hand and how they tied to the nervous system. The text that accompanied D.I.’s post points out that nausea is a common symptom for dysautonomia patients.

As many of you know, I have been suffering with chronic nausea for years. Lately, it’s been so bad that, at times, I struggle to eat. That’s actually part of why my GI decided to do the colonoscopy. As of my last appointment, he didn’t believe I had primary gastroparesis, but he did say I definitely have what is called “delayed gastric emptying” which is caused by my whole system running slow so it tells my stomach to stop working. Very similar, but different causes. He is thinking he might do more testing though, later, just to be sure.

I am wondering if the reason my nausea is so bad is because it has multiple causes?

Anyway, I found the article extremely interesting and really wanted to share:

Nausea and Vomiting: Not Always in Sync by Pharmacy Times

Emotional Roller Coaster, Old vs New

This weekend I’m having a rough time with my “new” body. I’m really missing being able to everything and not die. My fatigue is killing me and I feel physically beat up. I had a lot of fun, but I feel physically awful. Emotionally, the physical stuff is killing me. Ugh. This is just my life now, but I don’t like it.

Time for a Colonoscopy

As I mentioned at the beginning of yesterday’s post (The Personal Hell That Is My IBS), my GI is starting to suspect that my IBS may not actually be IBS after all. Why has he come to this conclusion? Well, for the same reason I am not completely shocked by his conclusion, actually: because I just do not respond well to any treatment for IBS that I get put on. For some reason, everything we do to try to treat my digestion problems just seems to cause me an entirely new set of issues. My system just doesn’t behave at all like it’s supposed to, to anything at all. Wonderful.

gastroenterology

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The Personal Hell That Is My IBS

Unfortunately, my gastroenterologist is now starting to suspect that my IBS may actually be something more than IBS. I have been dealing with my severe IBS-C for more than 20 years, so this is both not surprising and very frustrating. (Yes, I am only 26. I literally cannot recall a time in my life that I have not been constipated unless I was horribly ill and afflicted with diarrhea instead.) If I was told to name one singular illness that causes me the most negative impact on a daily basis, and that I have to most carefully plan my life around, I would choose my IBS. Yes, above the POTS that makes me so dizzy I can’t think straight, above the fibro that can make a gentle breeze feel like I’m being sand blasted, above the allergies that make my eyes feel like they’re full of sand, and above the asthma that can make me feel like I’m trying to run a marathon on top of Mt. Everest. My IBS literally runs my life and it is relentless.

gastroenterology

(Disclaimer: This post is going to talk about poop, just in case you hadn’t figured that one out; you might not want to be eating.)

What is IBS? Continue reading →

Another Cold

I somehow caught a cold again. For several days I’ve been sleeping forever (like, until 1pm). My GI pulled me cold turkey off the Amitiza, though, so I thought I was just having weird withdrawals. That was, until yesterday today.

Yesterday, I woke up and Dan bright me some cereal so could shower. In the shower suddenly it felt like my body was full of cement. Then attack of the phlegm. Then I realized I was feverish. It never improved. And I realized my throat felt odd. Eventually I noticed my tonsils were bright red and puffy.

Today, all the same but worse. Definitely sick. And I’m very explosive. And my throat actually hurts now and I have a cough. Not happy. Ugh.

Hopefully I’ll feel better soon.