posted
Apparently this is one of the newer SSRI's out there and it didn't even occur to me to think that there would be any problem stopping it.
Boy was I wrong.
As I sit here and write this, I am shaking, with chills, bone aches, my lyme pain at about 2000 percent of normal, and basically in total agony. I have been in this Cymbalta-induced withdrawal agony for TWO weeks now and it shows no sign of stopping.
And the thing is, I knew better. I should have checked. I know for example how coming off of another drug like Effexor can completely ruin someone. I have seen it hapen to 2 people I very much love, both having to go to the ER.
See, I had been experiencing so much success from my Leptin program that I suddenly over 3 days became able to sleep without any meds at all. So I just stopped taking them. Cymbalta was one of the meds I was taking for pain and sleep. *smacks forehead*
Once I realized my mistake as I was curled up in a ball sweating and shaking and moaning, I realized that I would have to taper myself off the meds. So I got back on them and did a tapering program, thinking that would help.
Trouble is, it's now about 2 weeks since I stopped from tapering and I am still in absolute hell. I am getting electric shocks in my bones and in so much pain, etc I just want to bang my head into the wall.
I have no energy and also seem to have developed a startling new symptom - mania (oh yay!), so I have not been able to post anything, but I am using my reserves here because I want to warn people to please please please be careful.
Yes, taking this med may slightly alleviate pain, but there is a good chance that if/when you decide to go off of it, it will ruin your life. I realize different people have different reactions, but now I am person number three who I have witnessed going through this nightmare.
It is SO not worth it. I don't care how much it hurts I am not going to let one speck of Cymbalta ever ever ever pass my lips. Or any other SSRI.
Please be careful, and use this med at your own risk. Be aware that the withdrawals are almost as bad as heroin withdrawals, and they last longer. I have never experienced pain like this before in addition to and exacerbating my Lyme pain.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Allison, Be careful..If you think you are in danger, get someone to work with you..These psych meds can be Hell...My daughter has taken so many that I can not be sure what has caused her to become so sick..Psych meds or the bacteria..
Get to a good health food store and ask for Help..They should be able to recommend some good alternative things..
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Cave, my local bartonella buddy to boot! You just made all of this worth it. I am SO glad to have been able to help.
I can't believe how cavalier these doctors can be. Not the one I have now (because I love her), but in the past it's the same thing. They have no clue what this stuff does to people.
It is only my anger at Lily (manufacturers of Cymbalta) that is making me able to tough through this withdrawal. But aslo, I tapered pretty much as I possibly could. I know also that Paxil is verrrrrrry hard to get off of. Ironically, back in the day, I was part of their clinical trials (paid guinea pig).
I have been on a merry go round of antidepressants many times. I have not experienced this with Wellbutrin, Zoloft, prozac, or...dang, can't remember what else they made me take.
Lyme mom, thank you! I am doing as much as I can with alternative stuff to speed up my detox right now, both internally and externally. What seems to be helping are epsom salt baths when it just gets too much to take. Also I am running through a course of chlorella and also a bit of oxy-powder here and there.
I'm also going to start the foot pads, I have some and completely forgot about them. Also I think I am going to get some bodywork done, maybe Bowen, and then just cross my fingers and pray really hard and drink a whooooole heck of a lot of water.
Hang in there Cave...
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
Thanks for the warning, Alison. I have a scrip for it, which I will let continue to gather dust.
I've been doing Zero Balancing, which I am skeptical about since I don't really understand it. However, I've noticed that I haven't been depressed & angry since I started it about a month ago.
P
Posts: 449 | From Vermont | Registered: Nov 2004
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Well, after months of doxy I finally got switched to Levaquin to try and go after the Bart. Of course, now that I've read all *those* horror stories, I'm just sitting around waiting for my tendons to explode LOL.
I haven't retested yet for Bart so have no idea if it's improving or not . . . I guess I'l see how the Levaquin does.
The thing that frustrates me the most about this Cymbalta debacle is that I was doing So Well just a few wekks before. This Leptin thing ...it's amazing. I was sleeping, starting to lose weight, my pain was going down, I had more energy, I felt like I had turned a corner. Oh, and my body temperature was up too! From 97.1 to 98.4 soooo close to normal! All just from balancing one little hormone.
But since Cymbalta completely messes with hormones/neurotransmitters, the withdrawal has been wreaking havoc with all of that and I'm back behind square one. Bitter? Me? Nah. LOL
Anyhoo...my doc also assured me that the doxy at 400 would deal with Bart also, even though I was antsy to try other stuff (which I now finally am). I'm glad to hear that you are tolerating the Cipro and that your tendons are all hopefully present and accounted for.
Sweet pea, that is awesome. If you can deal with the lyme without this med then I have to say that makes me breathe a huge sigh of relief. Even just the chance that you might go through this hell is not worth it. Right now I want to chop off my hands and feet because I'm thinkig it would hurt less.
But I also wanted to ask you about Zero Balancing. I am intrigued! Is can you explain that a little bit? I don't have depression at all (astoundingly, lol). The only reason I started taking the Cymbalta also was for pain and sleep, both off-label uses. Never again.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
Just wondering how long you were taking cymbalta and at what dose when you went cold turkey??
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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posted
Thanks for this verfy timely post! I just filled a script for my daughter. I will now retire it to the top shelf with all the other rejects!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Just to share another side...I have been taking Cymbalta 90 mg for a few months, and it has really helped me so much with the pain and depression. I will worry about the withdrawal later; I';m just glad to be getting a little relief now.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
PP - I had been taking it for only slightly over one month (!). I had stopped my lexapro which also caused some withdrawal, but it wasn't very bad, or was maybe made easier by overlapping with the Cymbalta. I was taking 60 mgs.
Tracy, I totally hear you about getting the relief from pain and depression. The Cymbalta did lessen my pain a little bit. It did.
But I just keep thiking to myself, if it is that horrible on my body while leaving it, what horrible things is it doing to my body while I'm *taking* it? Even if I can't feel what it's doing, it's gotta be doing something bad. I just would not want it in my body for an extended length of time. I think it is counterproductive to healing Lyme.
But...when the pain gets really bad I completely understand that decision. Completely. All day every day for the past 2 weeks I know that if I just take the pills again, my agony will end. it is very tempting, and it is quite a dillemma. Well, not really because I threw them all away lol.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
I'm in such the same boat, here! Before I realized the pain was Lyme related (read as: before I realised I had Lyme), I let a neurologist talk me into going on Effexor -- he swore that it would significantly reduce my "fibromyalgia" pain.
I read about it, knew the risks, and in desperation went on it anyways. It hasn't helped the pain one bit, and now I'm terrified to try to get off it. So, for now, I just keep taking the darn drug, letting the drug company have lots and lots of money from my insurance.
Don't get me wrong, here -- I'm not anti-SSRI drugs across the board, at all --- they are wonderful for a lot of things, like depression and severe anxiety (Paxil saved my life years ago when I was severely depressed) -- I'm a therapist, and I've seen psych meds truly give people their lives back! I just think that they are rather too liberally prescribed for things like pain, where the success rate is pretty low and the risks far too high.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Zero Balancing is performed while you lie on a massage table. The practitioner uses fingertips to apply pressure to what are called "fulcrums" of the body, I guess they're like pressure points. There's also a little bit of pulling on the limbs. These actions supposedly balance our physical body with our energy. It takes about 45 minutes, and you're supposed to do it 3 times (once a week) for it to be effective. Who knows.
I didn't keep the brochure but if you google Zero Balancing you'll come up with some info on it.
I also have severe sleep issues, which aren't any better since I started the ZB. Unfortunately Ambien has been the only thing that has worked for that.
P
Posts: 449 | From Vermont | Registered: Nov 2004
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posted
There's a good book on withdrawing safely from antidepressants. The Antidepressant Solution: A Step-by-Step Guide to Safely Overcoming Antidepressant Withdrawal, Dependence, and "Addiction" by Joseph Glenmullen, M.D. Here's a link: http://www.simonsays.com/content/book.cfm?sid=33&pid=513984
Although I never had trouble stopping antidepressants, this book scared the hell out of me. Based on his description of a teenager's horrific withdrawal from Effexor, I spent about 6 months very slowly getting my daughter off of it.
Posts: 164 | From USA | Registered: Jul 2005
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posted
It's your liver that needs TLC to the extreme during detox.
Do you have an 'alternative' practitioner available you can turn to?
These meds are poison. My son was on Celexa. One of my greatest regrets in his case. These drugs should have never been administered to humans IMO. Furthermore, they are put out one after the other and have never been studied as far as impact medically - each one years later is proven horrible. We got him off it but it took allot of internal organ care.
Withdrawal is very tough but it can be done.. your organs are under tremendous stress IMO. Good for you to be geting OFF. Still, you have to do it with great care.
Cleansing and detox will be crucial.
If you can find guidance in herbal detox, diet, and cleansing you will fare well I believe.
If you cannot find a guide, you can research and apply the focus yourself.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Now I'm a bit frightened myself after reading all this. I definitely trust the experiance of the folks in here who have been under treatment so much longer.
Is the Cymbalta worth the small benefit of less stiffness walking and some relief from the neuropathy? It has helped my right leg.
I've only been taking it since October, prescribed for the peripheral neuropathy. Now I wonder if I should taper off it the same way I tapered on to it, and hope for the best?
How are you feeling today, Alison? Is it starting to ease up any?
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
MizMo,
If you are already on it, AND, it is already helping you, it doesn't make sense to stop because it might be a problem stopping in the future.
Having dealt with neuropathy myself, I would just wait until you have things under control, then slowly wean off, and see how it goes. Maybe you won't have any trouble at all. And even if you do, the relief may have been worth it.
if you are taking it and it is helping I see no reason for stopping .
I would like to say that my husband would have never taken cymbalta just for pain relief.
I want to stress that he was very depressed with sucidal thoughts. That is why he started. And yes it was an added bonus that it has helped with his chronic pain.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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posted
Cave....you had me on the floor laughing. Mephistopholes indeed. Snort. LOL. Luckilly I used a certain porcelain disposal system to remove all traces of the vile evil medication from premises, so I don't have to worry about persons with pitchforks sitting on my sholder.
Thank you, MizMo for asking. Just today the little man who has been living in my bones and shocking me with live bare wires has decided to stop. I can only feel this is encouraging news. Also, my blood sugar/leptin/insulin resistance/insane sugar cravings have started to taper off and I am back on the Leptin wagon.
All in all it looks like I may have made it out of the woods, although the pain is still, on a scale of one to ten, about a bazillion point two. Roughly. Thank goodness I'm not suicidal, despite the fact that death sometimes feels preferable to this amount of pain.
To answer someone who asked...no I was not taking it for depression. My only reasons for taking Cymbalta were pain and sleep. I had depression for 15 years, bad enough to be hospitalized for it, hence my familiarity with depression meds. But, I was able to heal my depression completely through cleansing and haven't had it at all for a few years now. Not true clinical depression.
The above reminds me when I was in the mental hospital and met someone with "MS". Apaprently you can get thrown in the loony bin for it (and here I thought it was only Morgellons), which makes me sad, because what if what he really had was lyme? I just remember him saying to me, "When it gets to the point where I can't move at all, I want to be put on the couch so I can watch my daughters." How sad.
Anyway...thanks all for your support and responses and stuff. Don't you get really tired sometimes of having to always be one step ahead of the drug companies? And yeah, why can't they let doctors wantonly prescribe antibiotics with complete abandon the way they hand out this toxic candy? Sigh.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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My friend had to stop effexor after several years and experience the craziness and electric shocks as you describe.
She got some benefit while tapering from 5-HTP and as many amino acids as she could get in her system. It took her a while but she also swears no more SSRI's for her.
She takes sam-e now with good results.
Posts: 460 | From Illinois | Registered: Aug 2005
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posted
This sounds horrible! I have a llmd appt. tomorrow and much to my dismay had decided to finally give in and ask for something for stress. It may be a herx??? I stress over the smallest things and am paraniod. Do any of you that have had some experience with them rec. one to just help a little I want a mild very small dose. Thanks mimi
Posts: 343 | From usa | Registered: Dec 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Mimi,
My LLMD recommended something for stress after my dx.
At first, I balked but then agreed when I realized just how much stress I was going to experience.
I have taken xanax since June with no side effects that I can see. I take a super-low dose and it seems to take away that anxious edge without creating other problems.
I also think others here have used it successfully; it might be worth a search on the board.
I don't know much about this stuff at all, but I believe it's in a different category than the drugs currently being discussed in this thread. I just don't know that for certain.
Hope your appointment goes well.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Allison,
Thank you so much for bringing this thread to my attention. I'm so sorry for what you & others have gone through.
I just wanted to post here mentioning the Holy Basil (aka- Tulsi), that helped me to get off of both Zoloft & Effexor-XR.
I had been told Effexor was one of the hardest to withdraw from. It is the same class as Cymbalta (SNRI), so I don't know which would be worse.
I had some trouble reducing the dose on the Effexor, and when it came down to skipping days it was pretty awful.
Luckily I remembered the Holy Basil in my cabinet & started taking it whenever that "funny" feeling start creeping up on me. The doses got farther & farther apart & I was off it in a week.
I would suggest that anyone faced with the nightmare of coming off these awful medications give Holy Basil a shot. I REALLY hope it will be helpful to others, as I KNOW it helped me.
Ali
PS- GREAT THREAD!! Thanks for sharing your experience.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I have been on Paxil several times and the first two times the withdraw was hellish. The third time I stopped Paxil but immediately started taking Prozac.
Stayed on Prozac for a month and then quit cold turkey w/o any adverse affects. Prozac has a very short half life and no withdraw.
The only thing that helped was a hot bath with about a cup or two of baking soda - sit there at least 45 minutes until you start to sweat and stay there until it slows.
I would give the same warning to anyone of here prescribed hormones for menopause. I thought I was going to die on Premarin. I wanted to reach in and pull my spine out. The pain increased about 10,000 fold.
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Alison,
I also have a script I have not filled. I knew not to, simply because years ago I tried Prozac and immediately felt like I was having a mental meltdown, so I quit quickly.
LLMD's KNOW that lyme patients cannot and should not be on these meds, especially at normal dosing, why do they continue to prescribe them?
Read this, they call it "antidepressant discontinuation syndrome" it is exactly like your story, there is advice and there is a book about it and other advice like taking B6, I wonder if methylcobalamin injections (b12) would help, I know it couldn't hurt: http://www.healthyplace.com/Communities/Depression/treatment/antidepressants/article_withdrawl.asp Another sites recommends this for withdrawal: Key herbs that might be considered for SSRI withdrawal syndrome based on the symptom analysis include:
Thanks for your post and also thanks tailz and Lymebites for helpful herbs.
Thankfully it's been many months sice the Cymbalta debacle.
Ali - I have witnessed first hand the horrible effects or Effexor withdrawal. I almost had to take one person to the hospital, but I got her doc on the phone and he had me giving her teaspoons of water with a little Effexor in them and even those she could not keep down.
This was just to try to get it back into her system enough so that the withdrawal would stop, as she had stopped cold turkey. She was vomiting uncontrollably, shaking and in intense agony.
It's kind of ironic that this post comes up again -- I found myself starting to take amitriptylene again after unending insomnia. Yesterday I finally decided to try and go off Lyrica and the amitriptylene (Elavil).
Much to my shock and horror I am going through withdrawal AGAIN!!! This is very strange since I have gone off those 2 meds in the past without problem. Gaaaahhhhhhh!
Thankfully it's only about 1/10 as bad as Cymbalta, but man oh man.
A.
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've been on Cymbalta since Nov 06. If this med effects me badly when I need to come off of it, I will just have to handle that when and if it happens?
Cymbalta gave me the ability to deal with so much outside stress in my life during 07. If I hadn't been on cymbalta and was still trying to stay above water with xanax, oh my!!!!!!
I would of sunk for sure. Cymbalta helped me greatly with depression issues. But it also helped regulate my body's thermostat.
Cymbalta has serotonin in it. Our bodies are regulated temperature wise with serotonin. Before cymbalta, I was cold all the time.
Winters were horrible for me. I could never get warm and being chilled also made me ache more due to feeling cold.
I kept having my doc test my thyroid levels every 6 months for the last 5 yrs because I had been hypothyroid for years prior to lyme and low thyroid can cause one to feel cold always.
Finally after the cymbalta changed my life and warmed me up, I did some research and found serotonin is a temperature regulator and it all made sense.
I love cymbalta!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hey all, just wanted to say Lexapro has been great for me -- I'm only on a half dose and plan to stay on it as long as it works. I have had horrible anxiety problems with bart/Lyme.
Posts: 3528 | From US | Registered: Apr 2007
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posted
SO Is there no recourse for these God-awful feelings and mood swings and depression that makes me want to die????????????
Posts: 111 | From Pa | Registered: Oct 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Blackpowder, I thank GOD for the medications that help us cope with this awful disease.
Cymbalta, Wellbutrin, Lexapro are three of the most effective to us.
It's very personal, and you have to find the one that works for your body. That's the hard part.
When you find the right one, you wonder why you resisted for so long.
If you can't cope and are eating Xanax and Valium to get by, think about these alternatives.
Posts: 2903 | From AZ | Registered: Feb 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Blackpowder, no you don't have to accept those swings and moods. Earlier in my 8 yrs of dealing with this lyme & company, I had tried wellbutin, and celexa.
They helped me okay, but I didn't want to take another pill. I didn't/don't like to take an endless list of scripts. I now take this most important for me: tramadol (pain), synthroid (hypothyroid), Ambien CR (aahh sleep), and cymbalta (coping pill).
I take supps/vit/minerals big time. Aleve, tylenol etc when needed.
Taking a pill that helps a ill person deal with the fact they are ill. It's not our fault, it's our life. It's a hard life with lyme & company. It's very hard to struggle daily with pain, multiply areas of body including the brain is dealing with inflammation.
We never know from day to day, hour to hour what the heck is going to be effected next? Then you throw in the outside world...our family, our boss our friends, our insurance companies, our duck docs, issues from our life?????????
It is overwhelming for many of us. Not everyone reacts the same to cymbalta, wellbutin, celexa, paxil, etc etc. A good doc will work with you to find the one that will help you cope with all.
Whatever you choose to take, it will not be a cure all. Hopefully it will just help you in enough ways that you can check it off your list.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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