August 08, 2007PUCKETT: Ode On American Bionics, Or, Oh Cymbalta Cyde Effekts, I <3 U LAWTZIt has been a long time since I've posted anything here, largely due to surgical interventions to address my chronic pain, filing for disability benefits, physical therapy and a laundry list of other things that have been taking up my time as I'm trying to lift up the derailed train of my life and get it back on track. And with a lifting limit of 15 pounds and all sorts of motion restrictions, I really shouldn't be trying to lift anything at all. That's part and parcel of having become a bionic man and running electricity straight into my spinal column to induce parasthesia so that my back doesn't hurt as much. Wait ... you did WHAT?!?!? That's right. I channeled Steve Austin and even though I may not be better or faster or stronger, I don't hurt as much. Let me 'splain. After months of ineffective medications, constant pain and fighting with insurance, my pain management doc and I decided to do something relatively experimental and implant a spinal cord stimulator. The short explanation is that it's a little battery that runs an electrical current into my spinal cord to intercept pain signals before they reach the brain. It's a pretty nifty little device, but my doctor and I were looking at using this to treat a condition that it isn't frequently used to treat. We figured that if it worked to some degree, we could delay more permanent surgical procedures until better treatments come along. So in we went. Here I am, almost two months out of surgery, and I have a battery implanted in my hip with leads implanted in my spinal column and a remote control that looks like a garage door opener to control the whole shebang. Since I have to point it at the impulse generator, it might as well be a remote control for my ass because that's what it looks like. Somewhere along the road, my pain management doc and I returned to using narcotics to manage the pain. I rolled off the Lyrica, Elavil, Klonopin and all the other fun drugs that wrecked my sleep schedule, gave me nightmares, didn't block the pain, etc. My pain management doctor, pain management counselor, physical therapist and I all worked together to develop a comprehensive, holistic treatment plan that incorporated dieting, stretching and flexibility exercises derived from yoga and pilates, resistance and cardiovascular training, a consistently decreasing regimen of medications and constant check-ups to make sure the plan was still working. And all of these things were necessary. Although my weight gain was trivial compared to many reports of what happens to people on these meds, I still gained over 35 pounds (so far, I've lost 15 of it). Although I'm not doing any power-lifting, the resistance training was crucial to rebuilding lost muscle. And so on. And so forth. And so it goes. And then, after following a carefully planned schedule to roll off of the medications to reduce the impact, I came off Cymbalta completely on July 30, taking my last dose before going to sleep on July 29. To say that the week and a half since have been an interesting ride is a bit like saying that John Holmes fucked a couple of people. Technically true, but the order of magnitude is so much greater than can be explained that it's best just to leave it at that. However, here's my life over the past several days: 1. Insomnia and inability to stay asleep when I go to sleep. I've sent Philip way too many instant messages at 3 a.m. lately. I've averaged around two hours of sleep per night since last Friday or Saturday. I don't think I've had a single full REM cycle in that time. Wrecked? Not so you'd notice, as long as you're used to zombies staggering about your abode groaning "Braaaaains ..." 2. Nightmares. When I do get to sleep for the hour or two of unconsciousness I seem to get at any point, it doesn't really matter since I wake up more tired than before because my dreams were things of filth and horror. I can't remember them in particular, but the dread of descending into a cave occupied by a cult for one of the Elder Gods near Miskatonic University doesn't seem as threatening. 3. "Sensory Disturbances." God, what a euphemism and what a set of fucked-up side-effects it describes. The Saturday before I went off Cymbalta, I tried to kick a soccer ball around a local park with my fiancee's daughter and overdid the level of physical activity a bit, so when I was hurting for the next few days, I was worried that I had displaced the spinal cord stimulator leads and might need to have them adjusted. At least, that's what I thought until I searched for Cymbalta withdrawal on a lark and found a handful of Web pages describing some of the known issues with stopping a regimen of SSRIs / SNRIs, including this little gem: Now, this page is on Wikipedia, which I don't always trust because it often strikes me as scientifically unreliable; however, I can't ignore the fact that this page describes EXACTLY what I've been feeling. Anecdotal? Well, sure, maybe for a doc whose patient is describing these symptoms, but for me, they're fact. This is what I've been dealing with since I stopped taking Cymbalta, this is what I've been living with for the past several days during which the effects seem to be worsening, and this is what I'm dealing with as I write this post, because every time I look down at the keyboard to make sure my hands are where they're supposed to be, it triggers another one. 4. Mood swings. I normally have a great deal of patience for my fiancee's daughter. She's a great kid and I love her to pieces. Yet over the last week, I'm almost forcing myself to withdraw because I go from zero to a five-minute time-out at the moment when I first hear the initial hint of a snotty comment coming out of her mouth. My patience doesn't exist right now. My fiancee came back from visiting some friends for a couple of days and was frustrated that - in spite of all this - I hadn't done anything to pick up the apartment in her absence. As I told my counselor yesterday, I went from zero to fuck you in nothing flat then - after I was done stomping around and growling like a dinosaur - I went to bed and cried myself to sleep for the two hours of restlessness that passed for unconsciousness on Monday. Today, I had another nice little crying jag about this mess. While I'm sure the insomnia and nightmares aren't helping, this is really just beyond the pale. 5. Night terrors / sweats. I keep hearing these two terms thrown about in relation to each other and I'm not entirely sure which one is correct, but I might as well wake up wrapped in a towel that had been soaked in a sink filled with cold water. Suffice it to say that it doesn't improve how I greet the day, or whatever portion of it I have to confront, to wake up feeling like I had jumped into a pool with all my clothes on. I have said several times over the past week that, if I knew then what I know now, I would never have shifted from narcotics to psych meds to treat chronic pain. I've gone through withdrawal and I know how much it sucks. It really isn't even remotely fun. However, compared to this, opiate withdrawal is like a trip to Disneyworld because at least sedation helps get through the worst parts. This? I got off the phone with my doctor's nurse earlier this afternoon. After describing what's going on to her, she mentioned that she might be able to get me a few doses of Lunesta to at least address the insomnia and I asked her to double whatever dose I was on before because Lunesta only sort of worked the first time and, putting it very bluntly, I told her that I wanted whatever I take to hit me with a hammer so that I can finally get to sleep and stay that way for a while. In other words, if my dosage was X mg before, I want 2X. I'll only be on it for a brief period, so let's make good and damned sure the shit works. Even if I wake up with a soggy pillow because I started drooling to add to the fun. And that, at this moment, seems to be the best we can do. My pain management doc was able to trank me down when I was coming off vicoprofen so that I escaped all but the first day or so of opiate withdrawal. This? Well, the treatment regimen for this seems to be, and forgive me for getting a little technical and throwing around some medical jargon here, sweet FA. Bear in mind, this is just the stuff I can remember right now with a brain that feels like it's sitting on a skillet, "sensory disturbances," a memory that makes a sponge look solid and so forth. I hope that this jagged mess of side-effects passes soon so that I can get back to some semblance of normality. And, in the meantime, I think it's time to have a liver / kidney screen done to find out if anything has changed significantly as a result of these meds. I'm trying to resume writing and to do so more frequently, but it's difficult; this post has been well over 12 hours in the making for nothing more than several hundred words describing my personal experience. As I realized the other day when trying to do some work on my Web site for the first time in more than a year, I could barely remember how to begin. And when I combine all that with the insomnia, with the inability to get a decent rest, with the pain which can still be quite debilitating, with all of the rest ... well, writing, an activity that was always a refuge for me in the best and worst of times, now seems like someone I used to know who has changed so much that I can scarcely recognize them. And through this all, I have to laugh any time someone from the SSA or the law firm representing me asks whether I've gone through any workplace retraining programs. I had the lightest duty job in the world as a consultant. I can't retrain to go work in any industry or sector which requires lifting over 15 pounds - I could probably kiss the rest of my discs goodbye. And how in the hell am I supposed to retool when the issue is that the discs in my back are gone and the meds that I was told to take to alleviate the pain have destroyed my short-term memory at least temporarily? I can barely remember how to get started writing - when I do, remembering what I want to say is tough. And I'm supposed to believe that a class which will supposedly teach me a skill or set of skills will somehow make all of this better? I call bullshit. And with that, I need to try to rest a bit. Perhaps unsurprisingly, I'm exhausted and about ready to go face down on the keyboard. I'm sure I'll write more on all these as things clear up and I'm better able to translate my thoughts to the keyboard. In the meantime, I am that poster of a wistful-looking cat clinging to a branch with "Hang in there, baby!" printed on the picture in Cooper Black. Some days, it seems like hanging in there is all I can do. Posted by Puckett at August 8, 2007 05:23 AMComments
I don't know if it helps to hear it, but it's going exactly the way this process tends to go. Just roll with it.I know this is miserable, but it won't kill you, and you will come out of it feeling better than you have in a long time. The readjustment takes time...Yes, hang in there. Posted by: thememoryartist at August 8, 2007 05:36 PMYou can reinstate some of the cymbalta and withdraw slowly--very slowly--it will save you a lot of suffering. Posted by: Gianna at August 8, 2007 06:19 PMYour demise sounds like a nightmare! I shiver to think what I'd go through getting off of all my psych meds, too. Effexor was horrible. You *absolutely* have to be able to sleep - I agree 100% with you. It will drive you insane if you can't (so to speak). I'm glad the nurse is getting you something to help. I hope you feel better VERY soon...all of those symptoms you're experiencing AT ONCE would turn anyone into an emotional wreck! I think you should be applauded that you wrote such a wonderful, interesting post that I'll come back to when I'm going through a withdrawal one day. Thanks so much for sharing your experience.... Posted by: KansasSunflower at August 8, 2007 07:26 PMI tapered off the Cymbalta from 120 mg to 0 over the course of a month, dropping 30 mg each week. As far as I know, that's the lowest dose available and I REALLY don't want to delay this any longer. And yes, it does help to hear that feeling fucked up after stopping Cymbalta is normal. It would help even more if you had a rough estimate of how long I can reasonably expect this nonsense to continue. :) And purely for the record, here's how bad the insomnia and inability to remain sleeping is - I doubled up on Norco tonight before I went to bed at 8 p.m. I'm supposed to take one every 12 hours, but I also make a point of knowing how much I can take if the breakthrough pain is severe and it was bad enough tonight that two were called for. It's 9:49 p.m. as I write this ... and yes, I've been to bed AND to sleep. Posted by: Puckett at August 8, 2007 07:48 PMwell. i hope that remote does not open all garage doors, because all of my shit will be exposed. :) Posted by: Stephany at August 8, 2007 08:07 PMUnfortunately, it's impossible to estimate how long it it will take for the withdrawal effects to subside. It's a very individual process with all kinds of factors involved. It depends a lot on personal body chemistry along with whether you're on other drugs and how long you've been on them...I could go on...It took me nearly a year and a half of no meds for all withdrawal symptoms to go away. I don't want to scare you with that, but I also know people who feel they have permanent cognitive effects from the drugs, which I really don't.It's the kind of thing you just have to stick out and learn to cope with along the way. It gets easier. Posted by: thememoryartist at August 8, 2007 08:18 PMhi again. If it's been less then six weeks reinstating won't necessarily drag out the agony. (from what I've been told if it's been more than six weeks reinstating won't help) I was on Effexor which is a similar drug (SNRI) I opened the capsules and counted pellets once I got down to the smallest amount. I had very few withdrawal symptoms once I did that. you don't have to discontinue more than a couple of pellets a day and then you can wait a week or more before cutting down again. I've now come off several drugs and Effexor was the easiest because I did it that way. I know it has the potential of being one of the very worst just like Cymbalta. And before I changed strategies I was going down the road you're on. good luck--I feel for you. I'm coming off several meds and it's a long haul. I hope you feel better soon. Posted by: Gianna at August 9, 2007 08:02 AMIt's almost as if the manufacturers have some insidious plot to make Cymbalta so hard to come off of because the smallest manufacturer's dose is 20 mg and even conting pellets out doesn't work well because they have different thicknesses of coating! One can go to a compounding pharmacist perhaps and try to get a special formulation (or try a liquid titration maybe? -- don't really know) but going cold turkey off 20 mg is a recipe for disaster. It is possible to switch to Prozac and then taper off that SLOWLY and I really do mean slowly. To get off an SSRI safely one really should taper painfully slowly to avoid the hell you describe. There are almost NO medical professionals out there who really understand how to do this but there is help on the internet if you look for it. I wish you the best of luck. Posted by: Sara at August 10, 2007 06:23 AMP.S. I know Cymbalta is not a true SSRI -- affects norepinephrine too but apparently it's the serotonin part that causes the withdrawal issues which is why switching to Prozac can help. I'm sorry to say this but going from 120mg to 0 in one month is WAY TOO FAST. Really it's a recipe for blowing one's brain out -- I'm sorry to say this. But as I said I really wish anyone trying to get off these toxic (yes, that's what I believe) substances the very best of luck and commend them for their courage. Posted by: Sara at August 10, 2007 09:55 AMThere's no doubt that SSRI's are associated with a discontinuation syndrome that can be really bad for some people. But I think it's important to understand that going off any psychoactive drug is associated with problems -- heck, even stopping caffeine will give you problems. But these symptoms could also be related to you mental illness as well. And for the commentator who went from 120 mgs of Cymbalta to 0 in 1 month -- well, you should have known that was a bad idea. Posted by: Steve at August 12, 2007 02:48 PMJust a point or two for clarification's sake. 1. I post here not about psych meds per se, but about the practice of pain management and its increasing use of psych meds to treat chronic pain due to FDA crackdowns on doctors who are perceived to over-prescribe narcotics. Pain management physicians are often reluctant to prescribe narcotics because - by the time patients finally reach them and other treatments have been ineffective - a patient who may very well need narcotics to alleviate pain might be seen as engaging in drug-seeking behavior which can lead to a physician's license to practice medicine being revoked. Their wariness is justified, as is their search for non-narcotic means of alleviating their patients' pain. They're stuck between a rock and a hard place and I sympathize with them because using a pain management method that is known to be effective can cost them their ability to practice medicine but they also have suffering patients that they need to treat. 2. I wasn't prescribed Cymbalta or any of the other SSRIs / SNRIs that I've been on due to mental illness; I've been taking these medications because they have apparently shown some amount of effectiveness as a non-narcotic pain reliever (although I sometimes wonder if I would have been better off with a placebo - if I could do it all over, I'd take the narcotics, habituation be damned). It appears that pharmaceutical companies are eager to find multiple uses for the same medication, regardless of side effects, presumably because those corporations can then market their drugs for multiple diagnoses while only incurring R&D costs for the initial development, theoretically increasing their sales and profits. 3. My doctor and I carefully planned out a tapering schedule to roll off these medications which I followed to the letter; it isn't as though I simply decided to stop taking them. Since I'm one of a handful of my doctor's patients who is trying to go medication free and use techniques such as yoga and exercise to manage my pain, and since psych meds don't seem to have been used very long to treat pain management, I'm not sure how my doctor or I could be expected to know about anecdotal reports of side effects such as brain shivers which would likely only appear in psychiatric journals, not journals of pain management. Since most of the other medications I've been on have had relatively mild withdrawal effects that can be masked or mitigated through other medications, taking a month to taper off Cymbalta seemed perfectly reasonable when I had gone off vicoprofen with nothing more than a muscle relaxant to alleviate withdrawal symptoms and gone off oxymorphone cold turkey. When I started experiencing adverse effects, I promptly looked them up, but by then, it was too late. This is something that my doctor and I will be talking about tomorrow so that he is aware of this and can warn other patients and try to develop a tapering plan which further minimizes the side effects. 4. I'm not sure where you found support to infer that I was on these meds to treat some form of mental illness. In fact, the blog entry seems to state fairly clearly that the medications were prescribed to treat chronic pain. And as far as knowing what constitutes a good or bad idea in this area, there may be tricks and tactics that are widely known in the community of people who have been exposed to these drugs since they were initially prescribed to help treat mental illness. As far as the pain management side of the fence goes, it's a brave new world that doesn't have such people in it. Yet. Think of me like an exchange student, if you will. I'll go back to my pain management doctor and tell him all about these ideas and practices and known side effects and that will make things easier for his next patient. It doesn't make me any less fucked, but someone has to be first. Posted by: Puckett at August 12, 2007 03:52 PMCymbalta is prescribed by doctors[even though it is an "antidepressant"] for pain, etc. What happens when a psych med is off-labeled, yet "approved" by the FDA, is that doctors then have free reign over how the med is prescribed and Cymbalta is a nasty time released capsule prescribed for many reasons now, yet unfortunately is the same wicked medication that causes death, severe withdrawal symptoms, and frankly does JACK SHIT FOR PAIN. Puckett. Readers need to understand and really "get" that this medication has crossed over from "Christian to Secular". In a bad way. Thank you for being a loud voice in a really small world. My friend rx Cymbalta for pain,and died; with another antidepressant. Posted by: Stephany at August 12, 2007 06:36 PMThe withdrawal issues on Cymbalta have nothing whatsoever to do with what it was prescribed for in the first place. It has to do with how it affects the delicate balance in the brain, the feedback mechanisms, the allostatic load, the down regulation etc. And when doctors act like they know what they're doing when they advise going from 120mg to 0 in a month all they are basing that on is the half life, the time it takes to get out of the blood stream, and that has next to nothing to do with what's going on in the brain. There are a couple of books out there that can help with the process. One is The Antidepressant Solution by Joseph Glenmullen and the other is Your Drug Might be Your Problem by Peter Breggin. And as I said there are resources on the internet too. The people who know are the victims, the ones who have been through it, who are learning one agonizing step at a time, not the doctors or drug companies who push these drugs in the first place. Posted by: Sara at August 13, 2007 07:42 AMThe discontinuation may have slowed your writing process down a bit - but, if it's of any consolation, hasn't wilted any of its quality. It's a great entry and you're a great writer. Posted by: Andrew at August 17, 2007 01:07 AMI'm a little late in responding on this topic as it has been over a month since you posted this but I just wanted to chime in by saying that I too have gone through the Cymbalta withdrawal and it was brutal. So brutal in fact, that I have gotten quite fired up over not being informed prior to me ever starting cymbalta of it's potential for withdrawal symptoms. I have started an online petition addressed to Eli Lilly about it and I have formally filed a complaint with the FDA. People need to know what they are getting into when starting this type of drug. I hope you got through this ok. Posted by: erinsav at September 26, 2007 01:01 PMPost a comment
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