Wednesday, July 27, 2011

Switching to Savella - Guess Who Called Today

My fibro doctor, Dr. Wilkin just called in reply to my message from last week Tuesday. He may have been out or something last week because he said he's been trying to catch up on a ton of messages and when he saw mine he gasped and had to call me back right way (now). He apologized numerous times for not calling sooner.

I told him I was a lot better now, but had to deal with it all alone, and that I'd wished I'd been better warned about the withdrawal symptoms because the timing was pretty poor (for work) to be going through all that. He said he'd had numerous patients change meds like this and not report any problems.

I asked specifically about the hard stop on the Pristiq and the slow increase on the Savella and if what I experienced was withdrawal from Pristiq because the Savella wasn't compensating enough. (See the lovely chart I made above that shows my dosing change for SNRI meds.  The yellow highlights the week I was switching over... and miserable.  Notice the big dip in meds during that period?) 

He said that may very well have been it. I asked him what he would have told me if he'd gotten to my message sooner and he did say that increasing the dose on the Savella sooner would probably have been justified. I said I wouldn't dare do such a thing without his guidance, of course, but had wondered if that would have been a possible solution. He apologized again for not calling sooner. I told him to please keep this plan in mind for the next patient that may be switching to Savella from another similar drug: to have them take the higher dose sooner, and not wean up. He agreed that was a good idea.  Future patients: you're welcome.  :)

If you're going through this kind of SNRI or SSRI switch yourself, or will be soon, please ask your doctor about filling that gap in dosage and if you can possible skip the misery I went through by cutting over from full dose of one med to full dose of the next, especially if you're going from Pristiq to Savella, specifically.  Everyone is different, and every combination of medications can be different, so don't make assumptions.  But do stay informed and keep open communication with your doctor, preferably before any problems occur.

Tuesday, July 26, 2011

My "Pages" are Finally Updated

A while back, I added what Blogger is calling "pages" to my blog. This is the top row of links to other content on my blog. They've been under construction for a long time, but I've finally updated them. They may get updated in the future, but at least there is substantial content there.

Here are links to those pages, for my subscribers:
Home (same as before - my posts)
About Me
Fibro Info
Native Gardening
Craft Beer

As always, I welcome your feedback.  Enjoy!

Monday, July 25, 2011

Switching to Savella - Done?

Yesterday I felt relatively "normal" (for me) and I think the brain zaps are pretty much through with me, finally. I am still dealing with some odd sensations and discomfort, but after what I've been through, I've decided to try to keep looking forward and enjoy the progress I've made.

Although, to be honest, I have noticed I'm a bit cranky at work today. That could have nothing to do with the meds, though, as quite a few people on my team are missing and stuff is piling up and feeling a bit overwhelming. I'm doing my best to just pick something and do it so I can get it off my list. That's the best strategy I've ever been able to implement for dealing with having way too much on my plate. Just do one thing at a time until it's done and don't worry about the new things being added. A Benia's work is never done. ;)

I don't really want to admit this, but I have had some very minor nausea this morning. I grabbed one of my sugared ginger cubes from my stash and sucked on that for a bit, which helped. I have been nauseated for no apparent reason before the switch, so it could be nothing, but the top side effect of Savella mentioned by both my doctor and the medication information leaflet is nausea. Remembering how terrible the nausea was with Cymbalta, however, still makes me feel like this is going to be just fine.

Also, in the interest of full disclosure, I've been noticing some fast heartbeats and possible palpitations since starting on Savella. It's one of the possible side effects, but it was also possible with Pristiq, my old SNRI. I have been susceptible to tachycardia since I was a teenager, when I had my first scary episode, though no doctor could tell me why. It could be that Savella is exascerbating that now, but hopefully it won't last too long. The worst time is when I'm trying to sleep and I feel my heart just pounding away like a disco beat.

So, with this mostly behind me, I'm going to get my focus back on getting my tubby body back into some sort of shape. I'm trying to get back on my Baby Steps wagon, and have been trying new ways to strengthen my muscles - starting very slowly, of course. I felt some soreness in new places from the new exercises, which was a bit of a reward for me. I am also trying to get out in the sunshine and walk more, too, while summer's still here.

Hope these posts will help someone, either now or in the future!

UPDATE: See this important post as a follow-up to this withdrawal nightmare:

Saturday, July 23, 2011

Switching to Savella - Day 7

Despite more violent thunderstorms last night and remaining awake since the 3am tornado siren, I felt like this morning was much better, symptom-wise, than yesterday. I was able to sleep some of the night without covers or without having to completely burrito myself in all three layers of blankets, which was a great improvement for me with the temperature stuff. Then I also felt less dizzy and brain zappy, too, even after being up for hours and moving around a bit.

I did some of my Baby Steps exercises and when Don got up, we walked around the block in our rain jackets and had a little banana bread for breakfast. I went back to bed and napped for several hours and felt I was able to have beer again! That's a big improvement! We went to one of our favorite places - Bavarian Lodge in Lisle, IL - and enjoyed a couple of interesting new Belgians on tap there. I was also very good about ordering a salad, though most of the food is deliciously fried and German, because I'm still working on getting some of this weight off.

I'm looking forward to taking my first top dose pill of Savella tomorrow morning, and then heading off to meet up with a fellow fibromite friend of mine for brunch.

I don't want to jinx anything right now, but I had a good day today and felt almost human again. After several days of being way off that mark, this is a huge relief for me. I'm hoping the withdrawal symptoms from Pristiq are behind me and that Savella will improve my Fibromyalgia symptoms, as my doctor and I are hoping.

Oh, something I'd forgotten to mention in yesterday's post was that I was dealing with a little sciatica attack when I went to bed early on Thursday night. It was in my worse leg -the right - and always feels like sudden lightning strikes inside the back of my leg. Not fun, but at least it only lasted a few minutes.

Also, no word, of course, from my doctor. He's definitely going to get an earful at my next appointment about all of this.

Friday, July 22, 2011

Switching to Savella - Day 6

That indescribable feeling of being uncomfortable in my own skin and being unable to find comfort that I have been getting in the evenings happened again last night, so I went to bed at 8am, hoping to escape it with sleep.

I also managed to get a decent night's sleep, despite some magnificent racket outside. A huge thunderstorm rolled in last night and the thunder cracks sounded like the storm was right on top of us for a while. I listened to the pounding rain and the thunder for a bit, but still managed to get back to sleep. Hooray!

So, today, after several days of feeling dizzy and clammy and various other kinds of ick, I decided I had gotten used enough to the ick feelings to try to drive to work today. The brain zaps seem to be occurring less frequently lately, and I think going through the normal routine helps me to not feel so much. I managed to get through the drive with extra care and focus, and at the office, I caught up with my coworkers and did some light work. Luckily, it's the day after a release that went well, so things were very low key and low stress today. Thank goodness!

I did have some issues with temperature in the office. The air conditioning chilled my hands, yet I could feel the sweating on my torso continuing. I was uncomfortable and had my rain jacket on and off throughout the day to adjust. I also had some hot beverages to try to warm my hands up.

Concentrating was kind of difficult, as I remember doing roughly 20 things at once and not really doing them well or feeling like they were complete. I hate that feeling. I'm usually multi-tasking at work, but today I was more scattered, unable to finish things up and feel good about it. When the end of the day came, I had to give up trying to finishing anything and just get myself home. Now here I am.

There something else I wanted to note here about my symptoms. I have had feelings of not quite knowing who I am for a bit during all this. I don't mean like I had amnesia or anything like that. It's just kind of like I was on the outside, looking in, and felt not quite ME. Or perhaps I feel like I'm some sort of cartoon version of myself. Maybe cartoon isn't the right term, maybe it's like wearing someone else's persona, involuntarily. It was odd enough anyway. I can't quite describe it.

Something else that may or may not be related to any of this drug withdrawal stuff is that my right hand, my mousing hand, is very uncomfortable and somewhat tingly as of yesterday. Perhaps I've been computering too much without taking a break, but it's hard to get it to feel okay. I keep shaking it and trying to get the blood circulating properly within it, but it continues to feel strange. I hope this weekend will help it relax a bit and maybe get back to feeling normal again.

On that note, I'm going to go rest my hand and try to continue to pretend I'm normal and see if that helps me adjust a bit. I'm hoping tomorrow I will feel even better than I did today. My first full dose of the Savella will be Sunday morning. I'm not expecting to feel back to normal on Sunday (though that would be awesome), because it seems to take a little while for my body to adjust to anything. My hope is that by about Wednesday or so next week, I may feel like my "normal" (fibro-ey) self again.

Time to find some dinner...

Thursday, July 21, 2011

Switching to Savella - Day 5

I've been working from home again today and I noticed the brain zaps are getting less frequent, perhaps because I've been at the computer most of the day. I'll take it, whatever the reason. My abdominal issues are still there on a low level, too, but I've been managing and trying not to listen to the gurgles or think about it too much.

Last night I noticed I felt this odd kind of restless, unsettled, discomfort feeling in my body. At first I couldn't find a comfortable position for my feet while watching TV, but then I realized I was trying to shake off some sort of vague feeling I couldn't name. I don't know if this is related to the drugs at all, but I'm noting it anyway because it's weird. I felt like I wanted to get away and go to bed, but when I did, the feeling followed me there, too. I am still having some of this now. I may need to try to move around more to distract my body.

I am getting better at handling the temperature issues, I think. Last night I was baking up some banana bread muffins even though the weather this week has been near the 100 degree mark with all kinds of cautions about it and everything. I managed to make the muffins and make some salad for dinner, too. I was tired, but I felt useful, which was good for my mental state.

I also went to bed without my jammy pants, though I still needed the shirt and socks. Plus I was okay with not being buried in the blanket. That's an improvement. I ended up waking up at 3am, though, with a headache and inability to get comfortable, so I didn't get much sleep. It may just be my normal insomnia combined with odd sleeping temperatures and other factors, like the headache and bellyache.  I got up at 4am when I realized sleep wouldn't be back so my husband could get some sleep.

The good news is that I managed to shower AND get dressed in real clothes today - not just swaddling clothes, like for the past few days. I even brushed and did my hair! It's almost like I'm a real person again. 

Then I went outside, picked up the mail, and looked around our yard a bit. Our poor plants are all so tired from the drought and heat, even though they are hardy natives, many of them prairie plants. Still, there was life to be found, though, while bumblebees, dragonflies, damselflies, cicadas, birds, and even baby bunnies all went about their business collecting food and doing whatever else they need to do in our little yard. After meandering our path for few minutes, I went back inside to get back to work. (The release looks like it might go well.)

I have not yet heard anything back from my doctor. :P

If all goes well tonight and tomorrow morning, I just might be able to drive into the office for work tomorrow. Won't that be something! No promises yet, though. There's no telling what's around the next corner when it comes to this kind of stuff. Stay tuned...

Wednesday, July 20, 2011

Switching to Savella - Day 4

Just when I think I'm getting the hang of this brain zap and sweating thing, I am finding that my body is not done finding new, weird things to do to me during this medication change.

I have been having abdominal pains here and there, but today, they have escalated into full-blown diarrhea. (Some of last night's dinner looked familiar.) What the hell? I didn't know this was part of the program! Is this the next thing I'm going to have to live with for a while or what? Boo to that!

After being unable to deal with the idea of working for two days, I decided I'd try to work from home today. I figured since I was able to handle the brain zapping pretty well while doing various personal stuff on the computer, I noticed I could keep my eyes and body relatively still, minimizing the effect. It's still pretty crazy once I get up and move around, especially on the stairs, but I go slowly and hang on wherever I go. Thank goodness my shower has a bar to hold onto or I'd have fallen for sure!

The workday at home has been okay so far. I've managed to jump back into the projects and get some urgent things taken care of. (I work in IT and this happens to be a release week, so deadlines are tight. Figures, right?) Anyway, I feel better about catching up a bit, and not having to go completely broke by taking even more time off work. A day's work really adds up to a lot of money that I miss when I have to take unpaid time to be sick. It's better than being fired, though, so I count my blessings and I'm happy to have employment and benefits.

Anyway, back to the update on this drug transition...

I noticed a little bit yesterday, and a bit more today, that I am a lot closer to being on the verge of tears. I've been pretty good about not crying much since being on the meds and understanding Fibromyalgia and how it goes over the past several years. Imagine my surprise, then, when I found myself feeling like I was about to cry and actually let out some tears while watching television today at lunchtime. It doesn't seem to take much at all right now. Someone talking about something sad, an emotional moment, even stupid commercials are all making that feeling of tears welling up happen to me. It's dumb!  I don't care about these actors pretending to be sweet or sad to sell me products! This is ridiculous!! I hate this feeling. I've already fought off tears about 5 times today, just from dumb stuff on tv. It's got to be part of this withdrawal stuff or else I'm really confused about myself.

I noticed I was kind of snippier and angrier yesterday or a couple days ago, but that seems to be changing into some kind of sappiness. Geez, chemicals, figure it out already. I'm not in the mood to rediscover who I am or go on some emotional roller coaster... for nothing. Bleh. I just want to shake it off.

Oh, the sweating and my intolerance of cold or any slight breeze seems to be subsiding a bit today. I noticed I was actually uncomfortable in the hot office at home here today and, to my surprise, I turned the ceiling fan - and liked it. It's been on all day and I'm mostly okay with it. I'm still sweating because I don't want the air conditioner on yet, but I'm glad I can handle at least a hot breeze now. Perhaps later or tomorrow I'll be able to actually be cooler without bundling up in a thousand layers of blankets. Dare to dream...

Oh, by the way, I took my first medium dose of Savella this morning, so perhaps that has something to do with the noticeable changes of today vs. yesterday. The titration pack starts on a low dose, works up to a medium dose, then finally, by the next week, the full dose that I'm supposed to stay on indefinitely. I'm hoping I'll be in the clear about this time next week, after a couple days on the highest dose. Until then, I'll just have to keep adapting to the surprises. I guess I can thank Fibro for the training on that one. ;)

P.S. I finally got through to my prescribing doctor's office yesterday afternoon and left a message for the doctor about maybe getting some sort of guidance for this transition (since he implied this should have gone a lot more smoothly than it has been). It's been almost 24 hours now and I haven't heard a peep back from anyone. Nothing. Not a "he got your message and will let you know what he finds out" or a "he will give you a call tonight" or even a "go to hell, you're crazy". For all I know, the girl who took the message never even gave it to him. I'm not going to hold my breath about this, since he seemed not to be informed about any of this in the first place. It's a shame that so many patients have to go through much worse than this without help from doctors or anyone, because it's covered up. How rude, drug companies! Even if it's physically addicting and a bitch to get off of, let us know the deal and we'll decide if it's worth it or not. Then help us out when we have to go through this. People are trying to quit these kinds of drugs and are in utter agony. It's so wrong. If the drug company wants to make more of my money, I would suggest being open about all of this and researching the best methods for getting off when it becomes necessary for whatever reason. Don't just pretend it's not happening. That is not cool!

Uh-oh, there's my snippiness again. Sorry about that. This issue really irritates me. People disappoint me time and time again. I just don't see how they can go on continuing to be assholes. If I had the power they had, I'd use it for good, not evil.

That's enough for today. I'll check back here tomorrow.

Tuesday, July 19, 2011

Switching to Savella - Day 3

I am at home again today, with the air conditioning off, sweating profusely and my feet are still cold.  My bones feel cold and achy.  I'm sure my boss is not happy with me, but he should be happy he's not going through the crap I'm going through.

My brain zaps are continuing, which is the main reason I did not go to work.  I noticed there is a weird kind of tinnitus thing that happens with each "zap".  It's like the momentary deafness that can wash over your head from time to time?  (Or maybe that's just me.)  Anyway, when I move my eyes around I notice it most.  The ringing kind of gets louder for a second, I feel like I'll pass out, and there's some sort of pressure or lack of pressure or something that I feel in my head.  I hear ambient noise in the room at a slightly louder volume when it happens.  It truly is hard to describe.  The most disconcerting part is feeling like I'll faint.  I don't trust that I won't.  I hang onto walls when I walk and I go very slowly.

Perhaps the emotional stuff is coming around. I feel a bit more irritable and angry about this.  I know it is temporary (I hope), so I just need to get through it.  I just hate not knowing when I'll be okay and can resume my new normal life again.  If my doctor had warned me that I'd have a week to feel completely wack and wouldn't be able to work, I might have tried to plan better or take vacation time from work or something.  Instead I'm in this and I just have to finish it, no matter how long it takes.  There's no going back now.

Monday, July 18, 2011

Switching to Savella

During my last visit to the neurologist/pain specialist on June 21, 2011, my doctor strongly suggested that I switch from Pristiq (an SNRI much like Effexor) to Savella (an SNRI approved for Fibromyalgia treatment, specifically), to see if I could improve my FMS symptoms. I have been on the Pristiq for... I think 3 years now. It was prescribed by my previous Fibromyalgia doctor. I had heard that Savella has been helping other fibro patients, so I agreed to give it a try.

I am starting Savella via a couple of the starter titration sample packs, which gradually works the dosage up over the course of one week or so (two weeks, if necessary due to side effects like nausea, per the doctor). Once I achieve the top dose, I can fill the prescription and carry on with the full dose.

Well, today is day 2 of my switchover from Pristiq to Savella. I took my last Pristiq tablet (it's a once-daily AM dose) on Saturday morning and took my first tiny dose of Savella yesterday, around 3pm. The first dose of Savella is an evening dose, but I wasn't sure if I should wait until bedtime to take it, since it meant being without either drug for almost a whole day, so I compromised and took it in the middle of the day. Perhaps I should have waited?  Anyway, a few hours after taking the first dose yesterday, I started noticing a frequent, intermittent dizziness. Also, despite the summer heat outside, I was getting goosebumps from the fan air blowing on me and needed to get a sweatshirt. I later felt chilled to the bone and had a hard time warming up.  When the dizziness got worse with every movement or any eye movement, I wondered if perhaps I was experiencing withdrawal symptoms from stopping the Pristiq so suddenly and not moving right into a full dose of Savella... or if the Savella was causing its own side effects. It was a Sunday, so there was no calling the doctor. I did what any of you would have done: I searched online for clues.

From what I could tell in my research, the dizziness I'm experiencing is something similar to what people call "brain zaps". This term is used among patients to refer to a very strange sensation in the head while trying to get off medications that are physiologically addictive. Apparently anti-depressants (both SSRIs and SNRIs) fall into this category and my body is acting this way because it misses what it's been used to for a long time now. I learned about a lot of ways people try to describe this sensation, but it's difficult. For me, it's like feeling I'm going to faint for a half-second, but over and over again very rapidly, especially with any movement or eye movement. It's almost constant, but not quite.

Needless to say, it's hard to ignore and I took a sick from work today because I couldn't imagine driving or working in this condition. I napped away most of the day today, because it was all I could do to make this feeling stop - being unconscious. I also dreamt very odd situations, but I don't think that's anything unusual for me. My dreams tend to be very detailed and vivid, though they don't always make sense after I wake up and think about them.  It may be a fibro thing, a Pristiq thing, or maybe even just a "me" thing.  Who knows?  Also, my heart sometimes palpitates.  Today, every time I woke up from sleep it was pounding for a short while. 

Anyway, while doing research on these effects, I had to learn about all of it from patients themselves. Of course I went to the official drug information first, looking for their list of withdrawal symptoms and instructions, but, oddly, those could not be found. Come to find out, there has been quite a bit of controversy about drug companies hiding the research data on withdrawal effects. In fact, they refuse to call them withdrawal effects. They renamed them "discontinuation effects" wherever forced. There are investigations and lawsuits on a federal scale into the lack of information about how frequently these effects occur in patients who stop taking these drugs, presumably because it might hurt drug sales. My doctor didn't warn me at all about having to deal with any sort of withdrawals or discontinuation effects while switching over from Pristiq to Savella. I believe he simply does not have the information because it was omitted or downplayed by the drug reps and their research. Even I knew that stopping SNRI "cold turkey" would likely result in some sort of withdrawals, but I assumed that since I'd be starting on another SNRI right away, that I wouldn't have to deal with any of that. I could be wrong, but I think I'm going through withdrawals right now anyway.

Thanks to the plethora of information on the Internet from patients who have told their stories, I was able to understand that what I'm going through is connected to the chemical changes in my body. However, if I hadn't known about withdrawals from SNRIs, I might have had to endure more troublesome psychological effects, or possibly done something counter-productive, because of this lack of information. I'm including all this here because I know eventually, someone like me will be in the same position, looking for answers, and hoping to understand what's going on with symptoms like this. I hope this information is helpful to someone out there.

I'll try to keep posting on my progress here as things change. Let's hope it's not too difficult for me. I've read that many patients who make it onto the full dose of Savella do finally find better relief on it. I hope to be one of them soon. Wish me luck!

Monday, July 11, 2011

Weird Timing for Pain

Did you ever get sudden jolts of pain during odd times - usually with people around who wouldn't understand?

Today, my first day back at work after a week off, I was in a meeting with my boss and two coworkers. While discussing upcoming projects, my sciatica started acting up out of nowhere. I was probably making faces because it comes on so suddenly and fires those lightning bolt pains in the back of my right leg in rapid succession for several minutes.

I said nothing about it, of course, because we were involved in the discussion of the topic, but, needless to say, I was having a hard time focusing on the meeting. I grabbed my leg and wondered if I could voluntarily NOT wince so I wouldn't have to explain or be asked what's wrong. Well, nobody asked anything, but I'll never be certain that they didn't wonder if I was judging the discussion with my odd facial expressions or something.

Ugh. What a pain!