Topamax Week 4

This is an interesting medication, that's for sure. Every week it's a new adventure with this stuff! Week one was 1/2 a pill. Week 2, 1 pill. Week 3, 1.5 pills. Week 4, 2 pills. Well, I was a bit worried that I would have enough time to adjust to the full dose before going to Ghana so I pushed it a bit last week. I skipped 1.5 pills and went straight from 1 pills to 2 pills. That may have been why last week was a magic carpet ride! Can you say, "side effect?"

Drowsiness: Still there. It's not like a normal druggie drowsiness though. It's like a natural sleepiness. I feel like Sleepy Smurf! I could sleep 14 hours straight, get up, pee, eat, and then go take a nap. But I may have found a magic weapon. Caffeine. I don't typically drink caffeine because I am so sensitive to it and I already have horrible insomnia. But I find if I drink a bit of caffeine throughout the day I can function better and still sleep fine at night. Hopefully I have found a way to get around this side-effect for good!

Word-Retrieval: I'm not sure yet, but I may be past the worst of this. When I'm writing the words seem to be coming to me pretty normally. When I'm speaking...well...either I'm getting really used to not being able to come up with proper words, or I'm not doing it as much. The jury is still out. My mom did tell me last night that I definitely shouldn't plan to do any interviews anytime soon! [Thanks mom!] ;-)

Food Weirdness: Sometimes I'm nauseous. Sometimes I'm not hungry. Other times I'm hungry out of the blue. I rarely know what I'm hungry for. I've always had a sweet tooth my whole life but sweet doesn't sound good anymore. I don't want to eat very much at one time. Right now it seems that I'm eating less at each sitting but more times each day. [Most of this is actually good.]

Diarrhea of the Brain: I doubt this is, in fact, a medical term. However, this is how I feel. I feel as if my brain has turned into a giant mass of watery stinky mush! The word-retrieval issues have been replaced with absolute stupidity! Here are some examples for your amusement:

1. 
   
   
   I sent TWO pieces of mail this week on TWO separate occasions without postage.


2. 
   
   
   I had to apply for a new Ghana travel visa because my visa had expired. [Realize that it's part of my every day job to help other people apply for Ghana travel visas.] So the day after I sent off for my own visa I'm going through it with one of my families, a bit on auto-pilot. I'm telling him "Send your bank statement, but don't forget to mark out your personal account numbers." and I'm thinking inside my head. "Oh crap! I didn't mark out my account numbers!!! I just sent my bank account numbers to the Ghana Embassy!!!" Next I mention that he should send a copy of his itinerary with his packet and I realize, "Oh no! I didn't include a copy of my itinerary in my own packet!" Yeah, I'm a brain giant like that these days.


3. 
   
   
   I wrote a simple document last night--the type with bullet points. As I review it I realize I have written the entire document without periods. No periods! I'm not the best writer in the world but I am past 1st grade punctuation (and by the way, it took me 45 seconds to come up with the word "punctuation").


4. 
   
   
   I have been updating AAI's Ghana Travel Packet. I updated it with a specific driver's information and happened to need to send a family that information later in the week. It was all great except I forgot to put the guy's contact information in the paragraph!


5. 
   
   
   We went to the Arby's drive through yesterday, where I sat and carefully got my family's order organized in my brain before I pulled forward to order. Then I very politely ordered about 5 extra items out of nowhere.

I could go on, but I won't embarrass myself or my credibility further! I feel sort of better today so I'm hoping this brain diarrhea was my penalty for not stepping up more slowly on the medication dosage!

But let me tell you the good news!

Pain: This is all supposed to be about Fibromyalgia pain, right? I mean, that's why I'm trying the drug. There have been times I've lost site of that because of all the various positive and negative side effects. It seems that I'm actually seeing a positive effect on my pain level. Pain is a hard thing to measure, but here's how I see it. Before I started this medicine I would take medicine at breakfast, and then about 2.5 to 3 hours later start counting down until 4 hours had passed so I could take more medicine. NOW, I take medicine at breakfast, and then it might be six hours later when I start feeling very Fibro-ish and realize that I've forgotten a dose of medication. Now, it's not good to feel Fibro-ish because it's hard to step back from it. You want to medicate before you start hurting bad. But the fact that I can get busy enough to forget about the pain? That's something that would have never happened before! So, just maybe I am going to be one of the lucky ones that this medicine works for!

Leg Pain: Leg pain is one of my major fibro pains, and it was one of the things I was feeling even more of when I first started taking this medicine. I can thankfully say that my leg pain has gone back to it's normal amount. I think that side-effect has passed.

Sweat: Seriously, life-changing. Unless you've experienced over-sweating, you can't imagine what a big deal it can be. I feel chilly again! I actually put blankets over my legs, and wear a light sweater during the days sometimes. I am among the normal! I haven't pulled a hankie out of my purse to wipe sweat off my face in 3 weeks--even in places that I used to sweat to the point that I could literally wring my hair out and make a puddle on the floor (in the middle of winter!). This past week I have felt warm a few times, and started to "glisten" a few times, so I seriously am praying that this "side-effect" is not going away. My mom says I should definitely stop this medicine because of the brain fog stuff--that nothing would be worth continuing if my brain isn't clear. I told her that time will tell, but just not sweating is worth a LOT, and I won't give up on this medicine easily if it means I can not sweat constantly.

Weight: This is one that is conflicting. Ya'll I am starting to drop weight like crazy. I didn't start taking this medicine to lose weight. I have changed the way I eat, and the amount I eat and my motivation for eating, so I started losing weight at the beginning of this year. This medicine happens to have the side-effect of weight loss. But it's not a healthy weight loss. It's fake weight loss. There's no working for it. At the same time, does it feel good? Heck yeah it feels good! I just have to remind myself that this is not real. As soon as I stop this medicine, if I'm not eating right and living a healthy life, I will put every pound PLUS MORE back on. Since the beginning of the year I have lost 16 pounds. It's only in the last week that this medicine assisted in that. I did 12 of those pounds on my own. 12 REAL pounds. =-) My goal at the beginning of the year was to go to Ghana at under 200 pounds and I am now 4 pounds from my goal. At the rate my body has dropped weight in the last week, that should happen. It's a real mystery to me how a drug makes you lose weight though. Kinda gives me the creeps. Sort of like a horror movie that you like but you don't want to like!

There ya go Fibro folks. Week 4 on Topamax.

Anita

What's that word again?

About 10 days ago I posted about a new medicine I'm trying for my fibromyalgia--Topamax. Oh man, this one is a doozy. It's too early to tell if I will have the benefits, but not too early to see the side effects!

Sweat: If you've read this blog for a while you know that one of my other meds (Savella) makes me sweat like CRAZY! Seriously, in the middle of winter in 20 degree weather I might feel cold on the outside but still be dripping sweat. It is BAD. It's like heat flashes on drugs! One of the possible side effects of Topamax is "decrease or inability to sweat." You have no idea the happy dance I did when I read that one! Ha! And wonder of wonders, I actually have that side effect! I haven't reached for my hankie all week! In the kids choir (where I am a helper) I usually sweat buckets--didn't even so much as get the vapors! Tonight when we did our weekly shopping errands--the ones were I usually end up with hair so wet I can literally wring it out--not one glistening drip!

Legs: Leg cramping/aches is another side effect. I was really feeling it the first several days, but the last few days it hasn't been so bad. I'm hoping that this side-effect is wearing off already.

Nausea: Yeah. I have this. But it's not so very bad. Lord knows I don't really need to eat that much so I'm not worried if I don't really feel like eating! It's not really bad nausea.

Sleepiness: Definitely. This is a step up medicine so I will be stepping up to 75% of my target dose starting tomorrow. So far I've only taken the medicine at night, but I've really felt sleepy during the day, really wanted to sleep in every morning. I'm concerned about how much more sleepy I will feel when I add in a dose in the morning. We shall see.

Word-Retrieval Problems: Honestly, when I read about this possible side-effect at the start, I wasn't worried. "Fibro Fog" is a well known symptom of fibromyalgia and I've been dealing with that for years. But THIS stuff is on a whole new level! For instance, I sat there for three minutes trying to come up with the symptom "drowsiness" above but couldn't for the life of me think of the word! Now that I don't need the word anymore I just now came up with it. What I could come up with was a somewhat decent synonym. This sounds like it would be no big deal but when I am talking with potential clients or co-workers or active clients on the phone during the day it is SO EMBARRASSING! I thought about telling people, but I tried that with my mom and it totally backfired! After I told her it was like the word-retrieval problems went into hyper-drive for the rest of the conversation! Even my writing is taking me longer because I can't come up with words--just the embarrassment factor isn't there. My kids are getting so used to it that they just automatically fill in the blank when I'm talking!

Weight Loss: Supposedly you don't see this side-effect until you are at a certain dosage, which happens to be my target full dosage. Haven't seen it. I'm mixed up about whether I want to have this side effect. Yes, nice to lose weight. But it's not good to lose weight the wrong way and then just gain it back later when you go off the med!

I'm just trying to make it 6 weeks. They say most side-effects last 6 weeks. If people can get past the 6 weeks they can really assess if the med will help them or not. The biggest two challenges for me will be the word-retrieval and drowsiness. We shall see!

I'd appreciate your prayers that the negative side-effects would go away and that I would continue to see the positive effects from the medicine.

[Silly post for anybody who doesn't have fibromyalgia but I put these out there because when I'm looking for info there is very little.]

Anita

Topa-what?

I'm trying a new medication for Fibromyalgia. Topamax. I happened upon an online conversation where people where talking about using it for Fibro (even though it's an anti-seizure medication typically prescribed to prevent migraines). Seems like folks either really love it or really hate it--no in between. It's the kind of medicine where you have to start on a low dose and step up gradually to the goal dosage.

It's hard not to get my hopes up about a medication that could help. I'm not HORRIBLE with my current regimen, but taking 12-15 pain pills a day, plus meds for insomnia, plus Fibro med, plus 4 others is not ideal in my mind. What if I could take this and drop some of those? What if this gave me pain-FREE days instead of just days with less pain?

I'm watching for side-effects right now. This drug has some interesting ones--some that I wouldn't mind getting! On the plus side, people sometimes lose a lot of weight on this med--like 50 pounds a lot of weight! Also, one of the possible side effects is "less sweating." Yeah, I could handle less sweating (since the Savella causes me to sweat like a pregnant fish)! [Thanks P for that saying.] On the downside, some people experience pretty major brain fog (can't recall words, stop mid-sentence). That's already an issue with Fibro so taking something that makes it worse wouldn't be too cool. It can also make leg pain worse.

I've been on the lowest dose for 4 days now. I think I might be experiencing the leg pain side-effect but I'm not sure yet because leg/hip/butt pain is one of my most common Fibro pains. It could be that I would be having a bad few days even without the med. The side-effects are said to usually go away after about 6 weeks, so I will try to be strong for that amount of time to be SURE whether this drug helps or not. And if I lose a few pounds and sweat less, all the better!

Six

Six pounds down. What a lovely surprise. =-) Really trying to eat less processed and more whole foods (not that we're THAT good at it). I wish I could say it has helped with Fibro pain, but not so much. Still, I'm betting my triglycerides are going to go down!

Sweating Remedy

So, one of the side-effects of the medication I take for Fibromyalgia is excessive sweating. Nice, right? Ugh. I'm not talking about a nice feminine glow. I'm talking about sweating to the point that I can literally ring out my hair and make a puddle on the ground--in the middle of Target! I carry a hanky with me everywhere now, and it's gotten so bad that I want to shy away from social situations (church, homeschool group, dates, etc.) because I feel like such a freak. I feel like people must thing I'm sweating because I'm fat. I am fat, but that's not why I'm sweating!

I went to a doctor's appointment today and told her that while my pain is much more controlled than six months ago, the sweating is really affecting my day to day life. I think that unless people see me on a regular basis they really can't imagine how bad it is. When I do hang out with friends I try to keep fanning myself and stay as still as possible because any little bit of movement can start a whole episode.

OF COURSE, at the doctor's appointment I am only glistening--not dropping barrels like usual. I tried to will myself to sweat, but couldn't! I could tell that she believed me, but she hadn't seen it. It's either take the medicine that helps my fibro and sweat, or don't sweat and be in a lot more pain. At this point I'm not sure which one is worse!

My lovely doctor (who happens to be Asian) thought about it for a moment and really came up with no medical solutions. However, she did give me a good talk about how some bodies are always on the cooler side and some bodies are always on the warmer side. I have a "warm body." She says I need to do things to "cool" my insides. My body is out of balance and needs more "cool."

The prescription for today?

No hot drinks.

Drink only cold drinks with lots of ice.

Drink MORE liquid than usual. She feels that if I am better hydrated I may sweat less. (Huh?!)

Take cooler showers.

There ya go folks! I'll let you know how this anti-sweating prescription words out. Somehow I'm not too optimistic. =-(

Anita
P.S. I actually really like my doctor, and don't think that Asian medicine is "wacky." I just wish there was a magic "stop sweating" pill!