Friday, February 17, 2012

Getting Off Cymbalta

 Cymbalta is without a doubt one of the worst medications I have ever had the horror of coming off of. It was first prescribed while I was in the hospital during my last pancreas attack in 2007 to combat the pain I was using Percocet to manage. It was an awful hospitalization all around, but a few days after starting Cymbalta I felt this sticky sweat which made me feel gross and clammy. I was in the hospital for six days and thought it was the hospital inducing the nasty slick covering my body. But upon returning home I could not get away from it. I could not sleep without waking up drenched, constantly felt dirty and sweat out of my head profusely.  That one was really helpful for good hair days. One evening while at my aunt's house for dinner I had to blow dry my scalp three separate times my head was so soaked. I looked like a menopausal wet dog sitting at the dinner table fanning my head while everyone stared at 31 year-old me. I was not aware this was a documented side-effect of Cymbalta until I was perusing through Prevention magazine one evening and started reading the fine print on the drug's advertisement. It was like a light bulb went off. So that's what all the sweating was about!

I suppose it helped with the pain, although there was no marked difference and I was still taking Percocet daily to get through work and life. I was desperate for anything to damper the throbbing, stabbing, aching fire that coursed through my body unrelentlessly. So I stayed on the drug for two years until my pain was managed with high doses of Lyrica and I was off Percocet entirely. I complained of serious weight gain, more than 50 lbs., to my doctor. I conveyed my fear of an imminent pancreas attack. And I was told I would never get off Lyrica or Cymbalta. He instructed I go on a medically supervised starvation diet and gave me a referral to a bariatric surgeon. Woah! Are you kidding me? Get my stomach stapled because he had no idea how to treat my conditions and didn't want the review of narcotic prescriptions on his record? Sadly this was not the first time I asked myself, Whatever happened to "Do no harm"?

So I went on a holy quest to get off as many medications as possible. I blamed them for my weight gain and feared the consequences a lifetime on prescription drugs would have on my organs. Cymbalta was my first attack. I tapered down to half a dose. After about a month I stopped entirely. Oh I really should have cut the half into half, but it was a name brand prescription and too expensive. Well shortly after stopping I started feeling withdrawal symptoms I can only assume are like coming off some hard-core drug addiction. Inside I felt like a telephone wire cut in half by lightening which was now whipping and snaking in the air, cracking electricity with every contact. It would course through my veins and cause me to twitch and tremble. I felt like an eel, a shorted wire, a wet plug, in a word ELECTRIC. I was so moody and grouchy and angry and frustrated and negative. Emotional garbage came pouring out as I became consumed with every injustice ever inflicted on me, intentional or otherwise. I cut off contact with family and friends, the pure anger pouring out of me so great I could not differentiate what was real and what was a magnified perception from the withdrawal. I sat at my computer and wrote and wrote and wrote, getting it all out on "paper", feeling completely justified and victimized and wronged. I became extremely negative at work and borderline suicidal. I started seeing a therapist again because I was fearful of my actions without honest accountability to another person.

What I glean now from this experience is Cymbalta was masking psychosis from Lyrica, and once I was off Cymbalta the full experience of Lyrica took over. At this point I was with my new doctor at the Mayo Clinic and she upped Welbutrin to help my anxiety and quickly switched me off Lyrica and back on Neurontin (gabapentin). I began to feel much better emotionally and mentally, but of course never anything easy, the pain came back. I started loosing weight, though. Guess I didn't need that bariatric surgeon after all, huh Mr. Doctor? I have tried darn near everything out there to manage this disease that is so unbelievably destructive to living a decent life. Drugs, diet, exercise, supplements, acupuncture, more drugs, stress management, lifestyle management, disability, physical therapy, more supplements then anyone could possibly imagine, working barely part-time, more drugs, rearranging my priorities and expectations, moving to a warm weather climate, serious sleep management... Oh you name it and I have tried it. And my Fibromyalgia is managed! I can work, love, laugh and savor a little. No, I am not the woman I was before I got sick. But even though I had my physical health then I am much more mentally and emotionally full now. I am clear in mind and conscious. I know what I need out of life, where to put my priorities to get it done and what to just plain ignore because it will do nothing but suck me down. We are all different and each Fibromyalgia patient must keep trying until they find the right combination of lifestyle and medical management to get their life back. But as for me, Cymbalta, we are broken up, never getting back together again and I am sorry I ever met you!

Thanks for joining,
Leah


This blog was originally published on 8/25/10.

31 comments:

  1. I am so glad you re-posted this. I was considering Cymbalta because so many people recommend it. I have always been leery of side effects and this seems like way more then I am willing to deal with if I should decide to start taking this drug and expect to get off of at some point. No thank you.

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  2. The side effects that you experienced with Cymbalta must be universal. No one understands why I have sweat running out of my hair. My husband tries to be nice, but he can't understand why I need the fans and AC on in the winter. And your withdrawal symptoms must be normal for Cymbalta. I once missed 3 days just because I hated to spend $300 to refill it between paydays. I thought I would end up in the psychiatric ward. I heard voices, I jerked, I was FILLED with rage at the slightest thing (though that would have been a great time to run into my ex-husband), and all I could think about was how nice it would be to die. Since then, I haven't missed a dose. Not because I think it's a wonder drug, but because I'm scared to go through that again.

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  3. Thanks Leah....that one really hit home- Im in the process of getting off CYMBALTA. I'm taking Lyrica 3 x a day. Gabapentin 900 mg at night (thats all I can handle) wellbutrin 2x a day. Will be starting water therapy very soon.

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  4. Oh Leah!!! This sounds like my Cymbalta story. After suffering for a while with depression after a miscarrarige I was placed on Cymbalta. I began to gain weight and the hot flashes and night sweats were crazy! I started researching weaning myself off the drug and read horror story after horror story about the withdrawel symptoms. Unlike you, I decided to go off of it cold turkey. Within a few days I woke up one morning and had felt like I had the flu. Little did I know that day would change my life forever. It took some time to get diagnosed, but within a year I was told I had Fibromyalgia. Ever since that day I cant help but think that Cymbalta had something to do with it. Dont get me wrong, it helped my depression but I also feel it was the catalyst for my Fibromyalgia as well. I really wonder how many people have had similar things happen to them in connection to this drug, and I also wonder if the makers of this med could be held responsible. Thank you for your blog it is a great encouragement to me.

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    1. I have often wondered about that with lexapro, I tried it for a minute, in an attempt to put a band-aid over a bullet hole and in the midst of that ONE MONTH LATER life as I knew it changed FOREVER...

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  5. They say that cymbalta is supposed to help for pain, but I never felt any better on cymbalta. I gained 45 pounds in one year. found out that the weight gain was due to cymbalta. I had to cold turkey off cymbalta due to no money and no prescription for a week. I noticed a lot of zaps. Like my eyes would zap, I went back on it when I got the money, and being a nurse and knowing what my doctor would say, i tapered off over two months. Went to the doc and he put me on lexapro, which is more for my anxiety. Cymbalta is not the miracle drug they say it is, that;s for sure!

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  6. I do not have the side effects from Cymbalta, fortunately. I am taking 60 mg X 2 daily. I have taken it since it came on the market. My Dr. finally stopped prescribing Lyrica to me when I informed him that I was tired of the constant weight gain and was not going to fill any more of his prescriptions. He tapered me off, and switched me to a low dose of Topomax. Since 1-1-2011, I have lost 89 lbs following a heart healthy diet. Thank you Leah for your blog, I enjoy it thoroughly.

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  7. They put me on cymbalta and I didn't get the sweating, but I felt like I was on full electric charge all the time. I couldn't sit still and I had these incredibly annoying and painful zaps (for lack of a better word) that went on constantly. I didn't take it for long, so I guess that's why I don't remember having any withdrawal. If I get side effects that bad that quickly, I stop a drug immediately. I have become so fine tuned to which drugs cause which side effect, that I can always tell if a new one has added something too unpleasant to handle.

    And bariatric surgery because you gained weight on a drug he prescribed? Shame on him! That's the epitome of malpractice right there. These doctors should be aware of the side effects of these powerful drugs they are prescribing. It seems like most of the time, they just go with whatever the drug du jour is and don't even give a thought to telling us what might happen. Probably because they don't know.

    Paxil is the other one that causes horrible withdrawal, so if any of your readers are on it and want to go off, the only way I was able to get off of it was when my psychiatrist prescribed me a one time dose of prozac. The half-life of prozac is much shorter, but it gave my body time to get the paxil out of my system without the awful withdrawal. My dad is on paxil and he can't miss more than one dose without awful withdrawal. It's the worst of the SSRI's for withdrawal. I felt horrible. It's what I imagine trying to quit crack or heroin would feel like.

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  8. I was on Cymbalta for a year or two, which was initially an attempt to help with depression. I started it after the fibro pain started (although I didn't know that's what it was at the time). The first couple months or so, it helped with the pain. But gradually, the pain came back and the Cymbalta wasn't doing anything. Thankfully, I didn't have much in the way of side-effects, other than dry mouth. Having tried several different anti-depressants prior to this, I knew tapering off was essential. So when I knew I was going to lose my insurance and it wasn't doing anything for me anyhow, I gradually tapered off of Cymbalta until I stopped completely after getting down to the lowest dose. I had never had issue tapering off anti-depressants prior to this, even ones that gave me multiple side-effects. But the darn Cymbalta wouldn't let go. After a week I was really concerned for my mental health and my doc put me on Prozac for a couple weeks to deal with the side effects. Thankfully, that helped right away and I didn't have any further issues. On a side note, I've never tried Lyrica because the side-effects would be too problematic at this point compared to any potential help.

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    1. Be careful with the side effect of dry mouth. For years the antidepressants I used for insomnia (from Fibromyalgia) caused a very dry mouth issue.Eventually I had dental problems resulting in oral surgery and full dentures.The dentist and oral surgeon both informed me that the dry mouth side effects ruined my teeth.If I had known this back then I would've addressed it.

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    2. Be careful with the side effect of dry mouth. For years the antidepressants I used for insomnia (from Fibromyalgia) caused a very dry mouth issue.Eventually I had dental problems resulting in oral surgery and full dentures.The dentist and oral surgeon both informed me that the dry mouth side effects ruined my teeth.If I had known this back then I would've addressed it.

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  9. I used Cymbalta for several years and it was wonderful for my depression. When I had my tonsils removed a couple of years ago though I didn't take any of my medications for several days because I couldn't stand to swallow them. I was sent into major withdrawal symptoms from the Cymbalta. The brain zaps were AWFUL, but the scariest part was some sort of strange hallucinations that started with the scariest, goriest things imaginable. I ended up spending a whole night sitting up and crying because I was so scared. I nearly woke my husband up and made him take me to the hospital to the psychiatric ward, I was so scared I might hurt myself. My husband dropped everything and stayed with me until I felt completely better.
    After several years my depression outgrew the Cymblata, I guess. At any rate I needed a change. Fortunately the shift from Cymbalta to Pristiq didn't leave me with withdrawal symptoms. It did, however, uncover my fibromyalgia! Apparently it had been developing or whatever during those years I was on Cymbalta. The pain just kept increasing until I knew it couldn't be just a virus. In retrospect I can recognize breakthrough pain I was experiencing even then, but since the daily pain took control I've been fighting to get on top of it again. I am 32 years old and as of this week I now take 10 pills per day with several other "as needed" pills. I have found several supplements and especially essential oils that help some days, but I'm exhausted by trying to take control of my body again.

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  10. I was on Cymbalta for a few years. My head always would sweat when I went to try on clothes as did my entire body. I had been on Prozac. I'm now back on it, but am just still FAT! I eat almost nothing. These drugs are so messed up. I did a doctor supervised taper off Lyrica, and ended up in the stroke wing of the hospital. It wasn't a stroke, but not one doctor would admit my symptoms were from Lyrica withdrawal.

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  11. I am on cymbalta and 15 other meds. I have zapping when I try to sleep. they say it is mini seizures. I have had fibromyalgia for many years now and I am ready to getoff all of these meds, cause I am afraid of what they are doing to me. They just increased my cymbalts to 120 mg a day, and
    tramadol to 4 times a day for pain. I still have pain and pins ,n needles going through my body.I am ready to quit it all..meds,LIFE, but I can't cause I have 4 boys and 2 grandchildren counting on me.. What AM I TO DO????? ANY HELP WOULD BE GREAT> MY E_MAIL IS terrimomof4@yahoo.com

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    1. hi i also hav efibro and been on lots dofferents meds none work i have got some magnesium oil and tabs as i have read we are lacking in that take painkiller if really cnat cope sleeping tab if you get decent sleep its better drugs arent working so no point taking htem and thats coming from EVERYBODY you speak to with fibro ,my aunt also has she not taking anything but sleeping tab and the magnesium good luck xxx

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    2. Hello, I just want to encourage you that life will not cease without your meds. It may feel like it for awhile, as it did with me. I recently (over one month) have weaned myself off my medications. It was Hell but now that I am on the other side of medications, I feel better, emotionally. My wonderful husband said to me, just the other day, Wow,...well there YOU ARE ! I am working for a much better diet and try to control my pain with stretching and more natural remedies. I hope to lose at least half of "medication weight". I was on 6 types of medication. Has anyone succeeded with cannabis? My kids are actually the ones who convinced me to go off my meds and apply for a "medical use" card. I look forward to trying an alternative method. I keep saying: "someday..someday..maybe I will have energy again, limited pain, fewer headaches, etc..etc.. And yes, it is an automatic: kicked out of my Pain clinic Dr office. My hope is to go to a naturopath for additional guidance on my new "Quest for Life". Wish me luck!

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  12. I swear, drugs are such nightmares. Marajuana isn't the problem... it's drugs like Cymbalta and other depression meds/pain meds that have such crazy side effects. Cymbalta hasn't been too bad to me... I had been wondering why I go through hot/cold flashes... and what the rest of you expressed here may have answered that question. Do any of you find that Cymbalta puts you to sleep, keeps you awake or is it neutral? I've noticed weight gain since I started Cymbalta as well. I figured it was because my fibromyalgia was just getting worse and I was sitting more. Maybe it's a side effect... who knows.
    Unfortunately, I haven't had much success with Cymbalta as a pain reliever in any way. It's great for my depression though! I was on Effexor for a short time but I wasn't comfortable taking it and my insurance didn't want to cover it. Zoloft worked wonders for me for a very long time, but eventually it wasn't working quite as well, plus it had some less than desirable sexual side effects. :(
    Is Lyrica really that bad? I was on Amitriptyline and it gave me RLS, so I stopped using it. I was told Lyrica is it's cousin... so I'm afraid to try it. Thoughts?

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    1. I'm on Cymbalta for the side effect of pain from the Amitriptyline I take for insomnia. The Amitriptyline is coupled with Gabapentin;they cause my weight gain and other unfortunate side effects. I've always been skinny in a healthy way;oh well.I haven't had problems with Cymbalta otherwise. My Dr prescribed me Lyrica which didn't help with anything. RLS is a symptom of Fibromyalgia and nothing the Dr tries for me works. It's the nature of the beast. I think it's obvious to anyone who knows me that the Lord has helped me. If not for Him the Fibromyalgia would go full throttle against me. What I do struggle with I've learned to block or have a high tolerance.

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    2. I'm on Cymbalta for the side effect of pain from the Amitriptyline I take for insomnia. The Amitriptyline is coupled with Gabapentin;they cause my weight gain and other unfortunate side effects. I've always been skinny in a healthy way;oh well.I haven't had problems with Cymbalta otherwise. My Dr prescribed me Lyrica which didn't help with anything. RLS is a symptom of Fibromyalgia and nothing the Dr tries for me works. It's the nature of the beast. I think it's obvious to anyone who knows me that the Lord has helped me. If not for Him the Fibromyalgia would go full throttle against me. What I do struggle with I've learned to block or have a high tolerance.

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  13. I seem to have had some luck with Cymbalta. It doesn't take the pain completely away, but it does take the edge off. I don't want to be on it for life so I do eventually want to get off of it. I'm at managing it now, but I'm still prone to flares.

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  14. I gained a ton (at least 80 pounds) with Lyrica. I tried Cymbalta but it didn't do any good. I am glad that I did not continue since most of you gained more weight! ugh!

    heather

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  15. Thanks so much for your blog, Leah. I wish we didn't have fibro in common but it sure helps to know I'm not alone, including with med issues.

    Peace to you!
    Kali

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  16. thanks for posting, everything you said is my experience 100% with cymbalta and withdrawal from it..thank God I am now pharm free

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  17. That's all i want is to be RX free.. I have been on cymbalta, lyrica, tramadol, flexiril and ocassionally vicoden. Roller coaster of emotions I am all over the place, Cold turkey on all of these on Monday- except vicodin since the stomach pain feels like I'm bleeding on the inside. I increased my lacking nutrients over the course of a few weeks before dropping the bad stuff.(Zinc, CoQ10, Fish Oil and Lecithin. I have never felt this horrible in my life. I am on day 5 of detoxing. Yesterday was really bad but they have all been bad. The sleep issues are pretty intense no sleep the first night at all. Freaking scary hallucinations at night. Last night was the first night without them & actually got some sleep. Sweating right now as always since starting these drugs, now stoping. I have been dealing with horrible stomach issues and pain which makes me live in the bathroom even in the middle of the night. Iam losing some weight how can you not, cant eat much and all smells make me semi vomit. Quit smoking too since everything is making me sick. I just know it will get better every day I keep detoxing from this WHY would Prescription companies do this to people.??. God Bless -- Everyone should come off RX meds --All of them kill you on the inside and this facade of feeling better is a short time thing -u really feel much worse -- JUST Maintain a Healthy Life its all you can do. Just because you cover a rash on the outside of your skin doesn't mean the inside is protected -usually means something on the inside is causing it. Read the book "Spontaneous Healing"... Eye Opener for me!

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  18. I've been off Cymbalta for a few months now and STILL have hallucinations periodically. VERY WEIRD and scary! However, the pain is almost unbearable...I get almost sick when the pain starts and it's SO depressing to feel so badly!

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  19. Hang in there, It WILL get better! After the detox is over..mine has taken about a month. I did wean myself off: Effexor, gabapentin, Topomax, Oxycodone. At first it felt like every inch of my body was leaking or oozing. I had the opioid withdraw. The stomach ache, restlessness, sleeplessness...all of it and it was horrible! I look forward to my days without being dependent on my drugs. I do hope I can obtain a life worth living. Glad for the blogs! Just knowing I am not alone, helps alot.

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  20. I had the exact opposite reaction to Cymbalta. Although I felt dizzy and flushed for about a week after starting it, it has helped my pain in leaps and bounds.
    Mind you, my dose is heading up to 120mg very soon to see if that helps even more.

    I'm on my way to being on as few medications as possible and I'm so happy that I see it can be done. :)

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  21. These are so like some of my symptoms. The zapping! I tried for 18 months, and the brain zap thing was always happening. I had to go back on Cymbalta. I am now researching essential oils to find out if I can get off this stuff once and for all. I found a person who may be able to help me, and will come back here to tell you what I found.

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  22. These are so like some of my symptoms. The zapping! I tried for 18 months, and the brain zap thing was always happening. I had to go back on Cymbalta. I am now researching essential oils to find out if I can get off this stuff once and for all. I found a person who may be able to help me, and will come back here to tell you what I found.

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  23. It feels good to know I am not alone. I have been on Cymbalta for about two years. I don't think it is doing me any good and told my doctor I want to get off of it. I feel if I had more energy I would be more active and that would make me feel better than any meds in the world. Thank you all for sharing! Please continue to share good and bad! We are learning from each other!Thanks! Hugs!!!

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  24. Diane, Cindy, I "found" this site and your thread after doing a search for weight loss going off Cymb/Neurontin. I was put on these drugs in '2008 and went off them 2010 following the gradual draw down instructions. I was going through a stressful time in life (marital, financial, +++) and it was a disaster. I blew a bunch of job interviews, became overly hyper and moody, too talkative. Ended up with thyroid disease. One bright spot in all this is that I went down to my original weight of age 30, as a 50 year old. Bad news, did I mention horrid pain? Almost went to the ER from pain attacks twice in 2010. I am not a sissy. I can withstand a high level of pain. So for me to be crying and asking my husband to take me to ER is something. I wanted to snap when 4 doctors separately said I should go back on the FM drug combo. In 2010, I was successful in re-introducing the combination at a lower dose. Then my new doctor here in a new town told me I had traces of Lyme infection. With her treatment the pain decreased and the Graves Disease went into remission. The FM subsided to a tolerable level. I am now "finished" with Lyme treatment (3 years of antibiotics and a ton of other interventions). I waited 3 months and then started a draw down on the FM cocktail AGAIN. I am now DONE -- two days ago I finished. I am hyper again, but I am pushing through it. Not moody at all, and no pain attacks so far. I cannot wait to lose the weight from these nasty meds, and get my digestion back (you can imagine what 3 years of antibiotics does to your gut). As far as both of your comments go: Diane: I had horrible brain and cognitive issues starting 2008 -- yes - EVERYTHING complementary you can do, like aromatherapy, EMDR, acupuncture, yoga, massage, diet, ANYTHING at all helps. If you need a buddy to talk you through going off the cymbalta I have found a lot of faithful practical methods to manage my pain without it. I do not have a ton of money (at all) so I have had to be really clever and resourceful with what my insurance covers. Cindy: you are not alone! Same goes - I will be your buddy if you need one. You are correct. Pushing through the pain with activity is great. My favorites: walking, yoga, aquatic movement -- on bad days I go to the indoor pool and literally just jog in place up to my neck in order to get my heart rate up. I always feel much better. Stay away from wheat and sugar. Use yoga breathing when the pain gets bad. STAY STRONG LADIES --

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