32 replies to this topic

[Amybc7]

Once the weaning is over....and the last dose is taken....what then?  Can you share your experiences around this?  

 

 

[thismoment]

Amybc7

 

After the weaning is over and 5 days after the last bead, 99.9% of the Cymbalta is out of your system. Technically, the withdrawal part is over. Now the discontinuation part begins.

 

This is the beginning of Discontinuation, where your brain tries to convince you that you made a mistake and you need to get back on the drug. It will say and do anything to prove to you that you made the wrong choice; it may produce a medical magic show of unimaginable proportions to convince you to get back on the drug; your brain will fool you, your doctor, a few specialists, your psychiatrist, your partner, and your family and friends-- it will become the consummate sociopath with a solitary goal. 

 

But don't believe a word of it!

 

I weaned off for 6 weeks and endured serious discontinuation symptoms for probably another 4 to 5 months (apparently some people are exempt from this ordeal, but I wasn't). The data indicates that each case is different- some long, some short.

 

A number of phantom diseases came in waves over those months: I had lupus, MS, fibromyalgia, arthritis, umbilical hernia, gastric reflux, muscle pains and cramps, nausea, inner ear-like problems vertigo, heart palpitations, diarrhoea, partially torn retina, black floaters, peripheral vision hallucinations (robe swishes), headaches, night sweats, GI problems, the flu, gluten intolerance, lactose intolerance, nightmares, anxiety, itchy areas, depression, fatigue, to mention a few. I saw two medical specialists in those 6 months and went to the ER twice thinking I was dying.

 

After 6 months it was virtually all gone- it just stopped and everything went silent.  This is why I advocate tying yourself to the metaphorical mast for 6 months until the siren song of the discontinuation symptoms have dissipated * (it might be 3 months for some and 8 months for others).  Otherwise you could easily end up on another SSRI, as your symptoms will lead your physician to conclude that you need it. There was still the odd up-and-down wave action of aches and pains in the months that followed, but 98% of it just up and stopped.

 

After the weaning is when you really need this forum because you may encounter serious doubts. Don't worry, you will get through this part too!! We will help one another.

 

* Literary reference- the story of Ulysses and the Siren Song, The Odyssey by Homer.

[Amybc7]

Thanks for your honesty!  As I find myself in yet another sleepless night - I am so frustrated.  I've been weaning for 10 weeks tomorrow.  Do I keep slowly going down?  Is there any proof that the slower that you wean the less you suffer in the end?  Am I just experiencing all this in small doses for the ultimate build up when I do stop?  Should I give up and stop the medicine completely?

 

I know - realistically I'm just throwing this out there.  I hate that there isn't information.  That my doctor has no information or help at all.  I know you can't rush things - but at the same time I feel like everyone (and even myself) is waiting for me to "get better".  

[wayne]

hi amydc7 iv been on cybalta for 6mths i wos having hi heart rate hi b/p light headednes and dizzynes. ive now gone cold terkey its been 4 days and o boy. im realy getting head spins. iv read alot in this forum and alot say 8weeks ill be seeing my doctor tomorow and she's going to freckout but im going to keep doing to so ill let you know haw im going ova the weeks if you wish. it will suck but i think it will be better in the end so keep going and we can compere notes good luck and dont let it get you down

[fishinghat]

I have to totally agree with Thismoment. I would add that during the early stages (say the first 12 weeks or so). It is really helpful to take it easy on yourself. Don't try to over do it. If you get feeling a little better and start pushing it then it usually causes a relapse the next day where you feel like you are starting all over again. Take things slow and easy.

[thismoment]

Amybc7

 

It's known that as you approach the end of weaning off- in the last 5 mg or so- there's an onset of symptoms. So you have to go slow near the end- even back up a bit and restore a few beads until you feel more stable.

 

The sleeplessness seems to go with the withdrawal territory and many of us joined the Cymbalta Vampire's Club: we crashed on the couch during the day and haunted the night hours going from the TV to Youtube to the fridge. Many have sought a sleep-aid for these times. But the upset sleep patterns seems to be a very common complaint during withdrawal and for some time thereafter. It would be good to get some feedback on this.

 

There is no ultimate buildup when you stop, the symptoms just go on for a period of time- could be short or longer; it's unknown so you have to wait and see. Cold Turkey just brings it all on at once.

 

You could just stop and see what happens (no problem with that). If you can weather it- great. It not, go back on to your last dosage where you felt stable and stay there for a week or ten days until things calm down and then begin again.

 

Yes (or no), there is little information out there on discontinuation; we're creating the history now and you are part of it: our suffering will reduce the suffering of those to come. Sounds heroic and noble, but it still sucks!

 

Everyone who is waiting for you to get better doesn't help, and I know you know that-- that perception and the value attached to it is yours. Please try to let it go-- try not to let others influence the timeline of your healing. If you're not familiar with Mindfulness you may find it worthwhile. Are you seeing a therapist? 

 

Your brain is healing, re-wiring itself, scrambling to establish equilibrium within its new reality. It takes time and patience. Take care.

[air3333]

I know the psychological symptoms can last for months after because I went off of Effexor and it is the same class of drug as Cymbalta. The psychological effects may be hard to deal with and you might want to visit a psychologist (not a psychiatrist). Psychiatrists do not know this information because they are in the business of finding mentally ill people to put on their drugs and do not have an exit strategy after the drug is discontinued. 

 

Psychological effects include sexual dysfunction, mood swings, manic and depressive symptoms, anxiety and depression. This is why it is confusing to psychiatrists - because they think the drug fixed the person and now that the person is off the drug the person's symptoms come back a few months later. This is why some call this a recovery period. 

 

This is why it is hard for me to get off this drug, because I know that this will happen as it has happened to me before. It will be hard for me to work in that circumstance especially when talking to people with extreme anxiety. 

 

The drug could have helped me at the beginning, but it has caused problems long term. I know I wont be able to work on 60 mg of cymbalta due to side effects. If the goal is to work, then I should not be on this drug, and it doesn't matter what the psychiatrist says because he doesn't know what I have to deal with on an everyday basis.  So I am in a catch 22 and I know if I discontinue the drug I will experience these mood swings for months and even years after I quit. 

 

This is wrong that this can happen to Americans but if you realize that there are many things wrong with America today then it makes sense. Tobacco companies covered up side effects of cigarettes for years and that was for a product that they know causes cancer. Think about it for the antidepressants they work for some people and they can work short term for many, however long term they cause problems. It would be hard for the manufacturers to admit there are problems with the drugs especially because the people on the drugs in the first place are mentally ill and they feel they need anything to boost their serotonin up. 

[thismoment]

air3333

 

"This is why it is hard for me to get off this drug, because I know that this will happen as it has happened to me before."

 

Indeed, the same future is awaiting the same behaviour. Therefore you need to change the behaviour up front to create a different future. Yes the mood swings are coming- they come for all of us- but why do some people have different futures than others? One answer is some people do things to alter their mind state, and as a result they engage the mood swings in a different way.

 

How can you alter your mind state to prepare yourself? Seek out a Mindfulness and Acceptance-based therapy. Getting off drugs is not all chemistry and clockwork- a great deal of what happens to us depends upon the tools we have to address the kind of adversity withdrawal will throw at us. It's very similar for all of us.

 

It's not surprising that many of us ended up on psychiatric drugs because appropriate coping strategies were not emulated in our early environment. Many of our default coping methods were defensive, non-expanding, and adolescent. It's not our fault, but it shaped the future, and now it's here.

 

You can change how you react to destructive moods from within (or without) by changing your brain in advance.

[air3333]

Yes thismoment I agree. You can change how you react to the moods. I didn't realize at the time it was withdrawal and I thought it was permanent. I am wiser now and I now it is coming but I will deal with it the right way this time. It is still frightening to me that I will have to go through this as others have as well. 

[Limbo]

It's frightening to me too, incredibly so. It's my first time on anit-depressants, and my first time coming off of them. I went too quickly at first and felt dangerously overwhelmed, but now I am evened out and am taking it slow, as a result all is well again. I'd like to go faster, but not at the risk of feeling what I felt the first time. At that "dangerous time" I worried that I might do something to end it. Normally, I do have desires to die in episodes of depression, but I know the desire is a only a metaphor for how dark I feel,I don't actually want to die, I want is to escape the pain. With the medication withdrawal, it felt scary, like I wanted to and had to hold myself back. I never want to feel that again. I was terrified. 

 

A book that has always helped me is Dr. Jon Kabatt-Zinn's books. He has a mindfullness-based stress reduction program that is extremely helpful for chronic pain and depression. He runs these programs in hospitals but you can buy the books and audio CDs. 

 

http://www.amazon.co...nn/e/B000AQ12GA

 http://www.umassmed....t.aspx?id=41252

[thismoment]

Limbo

 

Good point about the difference between wanting to die and wanting to escape.

 

 

The Jon Kabat-Zinn material is very good; you're on the right track!!

[AnotherMind]

"This is the beginning of Discontinuation, where your brain tries to convince you that you made a mistake and you need to get back on the drug. It will say and do anything to prove to you that you made the wrong choice; it may produce a medical magic show of unimaginable proportions to convince you to get back on the drug; your brain will fool you, your doctor, a few specialists, your psychiatrist, your partner, and your family and friends-- it will become the consummate sociopath with a solitary goal."

 

TM - thanks for your post. Im trying to take solace from it and clasp the metaphorical mast.

Now in week 5 of no cymbalta and still on a wretched confusing roller coaster. Waking up with random nausea and nightmares, heart palpitations, horrible, painful gastric reflux and still really abnormal responses to excercise. Im struggling with some really disconcerting psychiatric stuff too  -it's starting to scare me. Find myself splitting off from myself so that the words trailing from my mouth make no sense - it turns into extreme self-hatred and the desire for self harm. Also feel inhabited by other people - to the extent that I am seeing other people's body parts attached to me or their thoughts infiltrating. I dont want to tell my gp or pysch as I feel they may want to medicate me again. these are new phantoms in my house - was this madness latent or is this discontinuation I ask myself?

 

this is a detestable web of sickness and neurological confusion.

[thismoment]

AM

Talk to your psych about this and express your concern about being re-medicated. Your symptoms appear to be morphing into a psychosis that ought to be addressed soon. Please call the doc and go in.

[FiveNotions]

Am,dear one, TM is right.... what you're describing needs to be talked about immediately with your pdoc, or you need to go to the ER....have your partner or a loved one, friend, family member go with you.... I had similar experiences once, about 7 years ago.....and it was, indeed, serious...it was a brief period of psychosis.....I needed to be in the hospital for a little while...and I was relieved to be there and to know I was safe......and yes, I needed some medication...and lots of sleep.....it turned out to be temporary, and I got over it nicely...but it wasn't something I could talk myself out of or just "wait it out"......there are times when medicine and docs are what's needed, and when they do know how best to help.....I think this is one of them for you....

I wish so much I could be right there with you, right now, to help you through this, to put my arms around you and reassure you that you're going to make it, and to be sure you get to the ER or your doc....I can't do that, but I am with you in spirit and prayer....

Keep talking with us here until you get to a safe place....we love you!

[AnotherMind]

Mmm - it looks shocking on the page doesnt it.

Sorry to have sounded so mad everyone - these incidents only last about 2-10 mins at a time and happen maybe 2-3 times a day. It's been happening for about 3 days - I just try to work or walk when it comes on. I guess the concern is at what point does one loose objectivity...? 

[FiveNotions]

AM, having these episodes 2-10 minutes, 2-3 times a day is serious stuff! Having even one such episode is serious!

You can't just ignore this...and try to walk it off....this isn't a discintinuation/withdrawal from cymbalta type of thing....

Please, I have had these types of experiences.....one day, the "experience" swallowed me up and I ended up in the hospital....

You must, must, must report this to you doctor and therapist immediately.....

Please, AM.....I'm begging you.....

[fishinghat]

"This is the beginning of Discontinuation, where your brain tries to convince you that you made a mistake and you need to get back on the drug. It will say and do anything to prove to you that you made the wrong choice; it may produce a medical magic show of unimaginable proportions to convince you to get back on the drug; your brain will fool you, your doctor, a few specialists, your psychiatrist, your partner, and your family and friends-- it will become the consummate sociopath with a solitary goal."

 

TM - thanks for your post. Im trying to take solace from it and clasp the metaphorical mast.

Now in week 5 of no cymbalta and still on a wretched confusing roller coaster. Waking up with random nausea and nightmares, heart palpitations, horrible, painful gastric reflux and still really abnormal responses to excercise. Im struggling with some really disconcerting psychiatric stuff too  -it's starting to scare me. Find myself splitting off from myself so that the words trailing from my mouth make no sense - it turns into extreme self-hatred and the desire for self harm. Also feel inhabited by other people - to the extent that I am seeing other people's body parts attached to me or their thoughts infiltrating. I dont want to tell my gp or pysch as I feel they may want to medicate me again. these are new phantoms in my house - was this madness latent or is this discontinuation I ask myself?

 

this is a detestable web of sickness and neurological confusion.

 

AnotherMind

 

This dissociated self-hatred thoughts, even though rare are too consistant to accept the risk. Go see your shrink. If he tries to get you back on an ssri or snri just tell him you don't want to go back to where you were. Try clonidine, hydroxyzine, a beta-blocker or some other medicine . It is your life and your health.

[gail]

AM, having these episodes 2-10 minutes, 2-3 times a day is serious stuff! Having even one such episode is serious!

You can't just ignore this...and try to walk it off....this isn't a discintinuation/withdrawal from cymbalta type of thing....

Please, I have had these types of experiences.....one day, the "experience" swallowed me up and I ended up in the hospital....

You must, must, must report this to you doctor and therapist immediately.....

Please, AM.....I'm begging you.....

Anothermind, I agree with FN entirely. She knows what she is talking about. She's been there.

 

Episodes of psychosis, if this is what it is, can be treated easily.

 

Of course it can subside any moment, who knows? why take the chance?

FN says this is not a withdrawal effect of cymbalta, and I have not read any posts in the last 6 months talking about those kind of symptoms.

 

Please consider the two God-like advices.

[AnotherMind]

Thanks for your concern people, and thanks for being straight about there being no other reports of symptoms like these - I will be booking an appointment for next week with pysch and I already have one with my gp.

 

Five Notions - were your pyschosis symptoms like thoughts that became visually actualised for a moment or was it something different? Im trying to grasp what pyschosis feels like.

I had to committ my best friend once while she was in the grip of pyschosis and it was a very dramatic and devastating transformation.  What Im going through just feels like nothing compared to that - they are little perceptual glitches where my thought process takes a weird kink and creates a picture or sensation that is briefly intrusive and destabilising. By all accounts my behaviour seems totally normal, it's subtle and short lived. But I take your point Gail - why take the chance if it should change.

 

The idea of being swallowed up terrifies me.

 

thanks all. what a bother.

[FiveNotions]

Wonderful, AM....seeing your GP and pdoc!

Well, my "little adventure" started out with the perceptual glitches....hearing other voices in my head, seeing myself from outside myself, feeling like there were two people inside me.....then it escalated.....to the extent I can remember, I think I had a seizure and passed out....I woke up, sort of, and then felt myself being sucked down into a deep, dark, velvet soft feeling well.....I was so far down, and it was so warm and dark and enticing...yet evil...and I was down there and one of the voices in me said "you have a choice...stay here and be safe and in the dark and never return to that other world, or return and have to continue fighting...something like that.....I wanted to stay down there...it seemed like it would be easy, even if evil....but the other part of me screamed no, I will not give in to you...and I started fighting my way up out of the well....when I got to the top, the opening, I crawled out into the light, back into the world of life and living and pain....and I felt myself break apart into two distinct persons....the sane me and the evil, mad, insane me....the sane me was trapped inside the insane me....I was watching myself go insane, be insane....screaming, ranting, raving, hallucinations, hearing voices....I sat inside of this madness and observed it....completely unable to express to anyone that I, the real me, was still there, but trapped inside the mad woman.....

That's the best I can describe it....I have no memory of how long it lasted, how long I was in the hospital, etc....there are other details, but that's the essence....

And all this happened in 2007 (I think, maybe a year or two before) and was caused by the generic wellbutrin that my doc at the time had out me on to save money because I was without insurance while working for a temp agency.....

The docs didn't believe me when I told them it was induced by the generic wellbutrin.....so, The generic had to do this to lots of others, and to kill a few people before It was finally taken off the market....just last fall.

Fun times, eh?

[TryinginFL]

FN...

 

That story literally scares the hell out of me!  I have never heard someone tell anything any where near to that!!  That had to be one of the most horrible experiences of your life - I am so sorry that you had to go thru that.  And that was caused by the generic  wellbutrin?

Wow...

 

Too frightening

[AnotherMind]

Thanks for sharing FN - that's sobering and you are an incredible survivor.

xx

[FiveNotions]

actually, that was my second time being "run over" by that particular generic wellbutrin (mfg by Teva).... happened the first time in 2004 or 2005....I was yet again temporarily without insurance....and to save money the doc put me on the Teva generic....that first time around, it made me sick over a period of a month or more.....to the extent I can remember, the depression seemed to keep getting worse as soon as I started taking it...the doc told me I was having "break through depression" and kept upping the dose....I think I was taking 450 mg a day at the point I really got sick (300 mg is the max recommended dose, as I learned afterwards) ..... I think I had a seizure that time, too....and went Into intense projectile vomiting and loss of muscle control.....trip to the ER, and a hospital stay...how long, again, I don't recall....they said if I'd gotten to the ER any later, I was so dehydrated and vomiting bile that I may well have died....

That first time, I had no idea that it was induced by the generic wellbutrin....but the second time it happened, I knew right away...but I was trapped inside the insane person and I kept trying to tell the ER and snake farm docs it was the generic doing it to me...but the crazy lady wouldn't let my thoughts come out of my mouth.....

I'm not sure, but I think I was put on the cymbalta as a result of one of the generic wellbutrin adventures...to glue me together, in a manner of speaking.....

Somewhere back in there I was also put on Xanax, because I was having panic and anxiety through the roof.....I ended up addicted.....it took me about 2 years to get off it, which I accomplished in mid to late 2008, I think....

Then, just because I'm lucky I guess.... I had yet another run in with the newest generic wellbutrin last December, just before the cymbalta nightmare....the medicaid clinic GP doc (I hadn't been able to get an appointment with the clinic shrink yet) insisted that the new generic wellbutrin, made by a different company, was completely safe...medicaid won't cover the brand if a generic is available unless the doc specially authorizes it and writes a justification....I was an idiot and let him convince me to take the new generic....one pill of it and I started down the same path to a psychotic episode....I stopped taking it immediately and called the clinic and got the freaking brand authorized....took several days and several calls I think.....and I was in wellbutrin withdrawal during that time....once I got back on the brand, I immediately felt fine again.....

Then, one week later (I think, again, memory ain't so great), I'd met with the clinic shrink, who insisted I had to take the generic cymbalta that had just become available.... So, I used the last of my brand pills, and took one dose of the generic cymbalta ......immediately headed down the primrose path yet again.....I called the shrink and left emergency messages....he never called me back...so I said fuck it and stopped the cymbalta...cold turkey.....(again, all this is just to the best of my recollection....hopefully I can get more of my memory back one of these days or months)....

And, that ladies and gentlemen, is how I ended up getting off the crapalta and finding this wonderful safe haven.....

Other than all that, my life has been relatively quiet and boring. ;-)

[TryinginFL]

FN...

 

Thank you so much for sharing - horrific experiences!  I hope that this info will help some of our friends here decide whether they need to seek more help.  This is terrifying stuff!

 

And yet here you are - being of great help to so many!  I'm so happy that you made it out of all of those terrible situations.. you are a strong, helpful and remarkable soul!   Thank you for your selfless outpouring compassion!

[AnotherMind]

FN

Im staggered at what you've been through - there was a program aired in Australia last week which talked about how risky Wellburtin is and how, due to some people loosing weight whilst taking it for depression they pushed the FDA to approve it as a weight loss pill. (this is in US) Apparently a disaster.

 

I feel we've really been betrayed by the drug industry - terrible damage being done. And how is it that generics can be so different from the big brand? - (ive had the experience of having adverse reactions to generic brand also).

 

FN you are amazing and generous, so glad you have come through all of this.

[FiveNotions]

On my way back to bed after a bathroom run...just checking in....AM, how are YOU feeling now? I told my story not for me, but for you....to encourage you to get what you're experiencing checked out right away....and I'm so glad you're going to do that....are these episodes still happening at the regular intervals?

And, have you told your partner, or at least one other close friend or family member? Someone close to you, who can get to you quickly if needed, needs to know......

Thank you, AM and TFL, for your kind words about me and my little saga....all I can say is that not coming through it never seemed like an option for me...it all happened for a reason and had a purpose....like I said above, and really meant....if not for what happened to me I never would have found this place and come to know and love all of you who are also here!

[AnotherMind]

Hi FN

Thanks for asking after me. Ive been clear of glitches all day - not a peep. I forgot to mention that Id had broken sleep for four days - it's probably no coincidence that having a full nights sleep last night seems to have cleared my head.

 

I have told my partner and we've got plans in place if it happens again or gets worse.

 

Ive been reflecting on my mental past -  I suffered very frightening hallucinations as a child for many years - and what has been consistenly labelled as A-Typical major depressive disorder has always contained a degree of heightened thinking and perception that treads a thin line. For some reason Cymbalta has left me with a prone-ness to visual confabulations in accordance with intrusive thoughts - so I probably have an underlying vulnerability.

I will talk to my gp next week about it.

 

Thanks for your concern. so glad to have met you even if it's 'virtual'.

[FiveNotions]

AM, how are you feeling today?

I'm so relieved that you've talked with your partner and have a plan "just in case".....now, be sure to talk to your doc/therapist!

[AnotherMind]

Morning FN

still no stirrings - feeling pretty normal.  I hope (fingers crossed) that it was a temporary thing.

[FiveNotions]

That's great, AM! Keep talking about what you feel/experience....helps to keep the "gremlins" away! ;-)