I Want My Brain Back
Thursday, August 27, 2009
Written by Kodi Wolf at 6:52 PM
One of my new doctors decided to prescribe Cymbalta (Duloxetine) for my fibromyalgia pain. It's an SNRI (Serotonin and Noradrenaline Reuptake Inhibitor) and was originally approved for treating depression, but has since started being used to treat other problems. I figured what the hell, if it'll help, I'll try anything once.
When we discussed side effects, I mentioned several drugs I'd been on when I was a teenager, and she said it would be most like Pamelor (Nortriptyline - it's a Tricyclic antidepressant). Pamelor never seemed to do much except dull me out, so I figured the side effects would be minimal.
Oh my gods, could I have been any more wrong?
Within a couple hours of taking the first dose, I started this yawning thing with jaw tremors and an intense need to cry out as I finished yawning, and then there was this sort of gasping thing I had to do because I felt like I couldn't breathe afterwards. Intead of yawning being something that took a few seconds out of my day, each yawn became like some kind of mini panic attack that lasted for about a minute. And I was yawning about every couple minutes for half-hour blocks of time over several hours.
Well, I decided if that was the worst of it, I could deal with it, because the next day, I felt like almost all of my fibro pain was gone. Unfortunately, I felt completely washed out and was a little annoyed I couldn't take advantage of being relatively pain-free. Instead, I was relegated to sitting in front of my computer playing Monopoly and other simple computer games to keep me occupied because I didn't feel like I could handle anything more mentally active, but I didn't want to just sit and watch TV all day.
By the third day, I felt like some of my fibro pain had returned and I realized through my dulled out state that my regular insomnia was not my regular insomnia. I'd been having trouble sleeping (falling asleep and then staying asleep) even though I felt utterly exhausted all the time. Normally, once I hit that exhausted "my brain doesn't work anymore" state, I'm out like a light and the only thing that wakes me up is Felix meowing in my ear for me to roll over so she can cuddle with me or a desperate need to pee. Instead, I was laying there, my brain not really working to the point that I was no longer freaking out about sleeping the way I usually do, but I still couldn't fall asleep. But I didn't have any energy to get up and read or play a computer game or even watch a movie, so I was just laying there not sleeping and kind of in a haze.
I also noticed a few other things. My throat felt tight and achy most of the time, making it difficult to swallow and nearly impossible to sing (something I like to do quite often and usually at the top of my lungs when I'm alone). My chest felt tight, too. I was also rocking almost constantly, something I usually only do when I'm in pain or having extreme anxiety. I was also more nauseous than usual and my constipation increased significantly. I also found it difficult to focus my eyes for reading, making it a real strain both mental and physical. My restless leg syndrome also intensified beyond anything I've experienced before, making my whole body feel twitchy, not just my legs, and it hit me throughout the day, not just at night when I was overtired, which is when it usually hits me (even then, it usually only lasts for maybe 5-10 minutes max, while this was lasting for a half hour or longer).
Then came the fourth night. Everything was going the same as before and then I started feeling weird. Then weird became anxious. Then anxious increased until I was rocking and my breathing increased to just under gasping and I thought I was losing my mind. After about an hour of this, I finally said, "fuck it," and woke up Corene, even though she'd only had a couple hours sleep (it was a Friday night, so even though I felt bad, I knew she didn't have to get up for work, so it wasn't too inconvenient).
But actually, I didn't wake her up. What I did was walk into our bedroom and stand next to the bed on her side and pet her upper arm. Petting her arm was sort of soothing and I was just barely holding onto sanity and couldn't quite make the transition to action even though in my head I wanted her to wake up. After a few minutes, she finally woke up and realized I wasn't quite acting like myself and asked what was wrong and I told her I was freaking out and I thought I was probably having a reaction to the drug. She said okay and sat up and told me it was okay and pulled me into a hug.
My breathing was still out of control and I almost hyperventilated and started sort of crying out as the anxiety intensified to a level I'm not sure I've ever experienced before. I mean when I have a regular old panic attack I feel like I'm screaming in my head and I can't breathe, etc., but it's a kind of paralyzing thing and I'm physically aware that those are feelings and I'm not actually screaming and my breathing is steady. With this, I was actually acting out my anxiety.
I told Corene that nothing felt right, that I felt weird and like I was insane and not in my body, and then when we moved to another room, I realized gravity had shifted on me.
This wasn't what I would normally refer to as dizziness or vertigo. Those words tend to mean to me a feeling like the room is spinning or the floor is trying to slip out from beneath my feet. No, this literally felt like gravity was shifting and I was being pulled in one direction or another and I had to hold onto furniture and doorframes and walls, actually pushing against them, to keep from tumbling over. I've never felt anything like it in my life.
Then, after I started to calm down a little, I noticed a kind of buzzing in my body, like something was vibrating inside me.
Eventually, I calmed down and pretty much vowed never to take the drug again, but over the weekend, Corene and I talked and I decided if I could cut the dose in half, I would be willing to try it again in the hopes of getting at least some of the benefit without the intense side effects.
I called my doctor on Monday and she told me to try taking it every other day and at bedtime in hopes that I would sleep through the side effects and not feel so anxious. I took it that night and felt the weirdness return, though it didn't quite get to the level it was at the previous Friday, but the restless legs thing kicked into high gear and the last thing I remember is waking up from a light doze and thinking, "oh good, at least my legs finally stopped." My legs were actually sore from tensing so much and for so long. I think the only reason I was able to fall asleep at all was because I took a Darvocet for pain from a neck muscle I'd pulled earlier that evening (and believe me, that was not fun with my legs jerking all over the place for half an hour and jarring my neck).
So I've basically decided that's it. I'm not taking it again. None of the side effects are worth the reduced pain, which had started coming back after only a couple days anyway. I thought I was non-functional before, but on this stuff, I'm beyond non-funtional. I feel like I need a babysitter.
I think I've also sworn off messing with my brain chemistry ever again. Every time I try, I end up worse off than I was before.
The original reason the doctor wanted to put me on Cymbalta was to help with my daily headaches (she's a headache specialist). She told me to stop taking Sudafed and ibuprofen because they probably weren't helping and might even be making my pain worse. The Cymbalta was supposed to take the place of the ibuprofen and be "better" for me.
I wasn't really taking that much ibuprofen before and I haven't had any since starting the Cymbalta, so I don't think that's going to change. I mean if I took a pain med every time I had pain, I'd be on the stuff 24/7, so I tend to just grit my teeth and bear it most of the time. I hate taking any kind of medication, so if I can get by without it, I do.
But you know, I'm not likely to freak out on ibuprofen. I don't rock or feel like gravity has shifted or like I'm not real when I take ibuprofen. So I think I'm going to stick with something I know won't make me lose my mind.
And don't even let me get started on the rest of the past couple months... Oh what the hell, why not?
Back at the end of May, I broke out in hives all over my body and ended up in the ER, where they gave me two shots in the hip of steroids and Benadryl. I was referred to an allergy specialist a week or so later who tested me and concluded I'm allergic to all crustaceans, dust mites, shrimp, and cockroaches, though there's no telling what actually caused me to have such an intense allergic reaction. He told me my immune system appears to be a tad "twitchy" and just to be careful, and then he gave me some Epi-pens and put me on Nasonex.
A few weeks later, I went back for a checkup with the allergy doctor and after mentioning I have headaches every day, he told me that's "abnormal" and referred me to the headache specialist mentioned above.
During June and most of July, I finished tiling the kitchen, laying down the baseboards and trim, etc. Someday, I'll post pictures.
Finally, at the beginning of August, I got to go on a 6-day vacation to the beach for my family's biennial reunion. I got to relax and spend time with my wife and family with nothing more pressing to do than make sure I had enough sunscreen on before getting in the water.
Of course, the day before we were supposed to leave, I got a sinus infection, which pretty much put me out of commission for the next couple weeks.
Then last week I went to the headache specialist mentioned above who diagnosed my headaches as migraines (yay, another diagnosis). I'm currently scheduled for a series of 3 nerve block/trigger point treatment shots in my back and neck for the month of September.
Then on Monday I went and pulled a muscle in my neck to the point that I could barely move my head in any direction without immediate sharp pain. At least it's gotten a little better and my chiropractor said I should be mostly healed in a week or so. Of course, he also said I should take ibuprofen for its anti-inflammatory properties because my muscles have all spasmed and locked up. I still haven't decided whether to do it or not. I'd really like to be able to walk into the doctor's office and say even though I refuse to take the Cymbalta anymore, I'm at least trying to follow her other advice about the pain meds. I guess it's a pride thing.
Corene says this is the exception to the rule, though, since I wouldn't be taking the ibuprofen for pain, but for inflammation.
Needless to say, writing has taken a back seat yet again, and it's really starting to piss me off. I feel like I'm still in a fog from the Cymbalta, like my stories are there, just under the surface, but I can't get to them. That creative spark I'm used to feeling every day (even if I've been pushing it aside because I have to focus on other stuff) feels muffled, almost like I don't care. I really hope that goes away the longer I'm off the Cymbalta.
At this point, I just want my brain back.
So, how's your summer been? :)
Comments:
Ceredwyn said...
August 28, 2009 1:22 PM
Awwwwww, sweety.
petpetpetpetpetpetpet
Cymbalta does have some pretty odd side effects. The yawning thing is actually pretty common from what I understand--often accompanied with weird twitchy neurological stuff (some people have orgasms every time they yawn fer instance).
Take the fucking ibuprofen.:)
Anonymous said...
September 24, 2009 9:19 PM
I also have had a history with fibromyalgia, and my doctor prescribed a drug commonly used for epilepsy. It's only function was to stop the constant spasms in my muscles. It worked great. After a day or 2 my back & neck relaxed and I was actually able to sleep thru the night and dream. That was something I hadn't done in literally years.
After reading your post I looked up this drug and according to what I have been seeing about Cymbalta, you were having a severe allergic reaction to the drug.
I am by no means any kind of doctor, but it seems to me your doctor should have seen the symptoms you describe as an allergic reaction and discontinued use immediately.
I would stay w/the ibuprofen and ask your fibromyalgia doctor about the epilepsy drug. My doctor specialized in fibromyalgia and had as part of my therapy back massage,chiropractic adjustments and relaxation exercises. If you are at all interested you can contact me and I will try to find out what the drug name was. I had contacted you earlier via email regarding paid subscriptions to your site and just signed up today.
I sincerely hope that you find a safe solution to your pain.
Ann Maijala
Anonymous said...
November 7, 2009 10:02 PM
I have come to find you after having lost you for quite some time. The website is looking truly incredible. Always glad to see you have been working on the vampire hunter series. :-) Just want you to know you are on my mind and I am sending you good thoughts. One more thing, go see someone specializing in auto-immune disorders. Fibro falls into this category. They say the auto immune disorders are not typically hereditary, but I and my 3 sisters all have different types of these disorders (rheumatoid arthritis, fibromyalgia, sarcoidosis, or some combination of these). I also agree about taking the damn ibuprofen. Remember that you are your own best advocate.
Sending you healing thoughts...
