29 replies to this topic

[tria]

Hi Everyone - I'm new to this forum and I am so glad to have found it!! I am slowly weaning off Cymbalta and have some questions about what withdrawal symptoms others have experienced.  I've read a lot of the other posts here, but I have a lot of health problems and just can't read as many as I like, so thought I'd post my symptoms and see what others had to say.  I am weaning by removing beads, but I'm using a scale that measures down to 0.001g so I weigh the beads instead of counting.  Roughly, I'm probably removing 5-7 beads every week or two.  I was taking 20mg and am at about half that dose now.  It seems to be getting more difficult to lower the dose, but from what I've read here this seems to be common.

 

I have numerous health problems, which makes determining what are withdrawal symptoms a bit difficult.  I have arthritis, chronic migraines, had thyroid cancer so I'm on Synthroid and Cytomel, and I have mitochondrial myopathy (a rare neuro-muscular disease which is probably the cause of my muscle pain - not fibro as originally thought when I started the Cymbalta).  Anyway, here are some of the symptoms I've been experiencing which I think are related to weaning off the Cymbalta.  Can anyone tell me if they've experienced similar problems?

 

Nightmares - dizziness - pounding headaches (I do have chronic headaches but I'm also now getting unbelievable headaches that just pound in my temples) - nausea nausea nausea! - abdominal cramps - diarrhea - heart pounding & shortness of breath (I've had a stress test, echocardiogram & pulmonary function tests, all normal) - crankiness and downright hostility - drenching sweats, day or night - trouble concentrating - obsessive worrying.  I also have mood swings and crying fits that are just terrible.  I will feel relatively fine then feel horribly depressed for several hours then back to fine again.  I also read on one post here that someone had "irrational fears" - I have this as well.  Some nights I can't stand the house being dark, or I will be afraid to get out of bed in the morning. It's just bizarre.  I also experience a horrible terrified feeling sometimes - terrified of what, I don't know, it's just this awful feeling.  The mood problems are just ridiculous.  There are days when I simply cannot function because of them.  Even something like making a simple phone call is too much.  I am really struggling!!

 

Has anyone had fatigue or muscle pain while weaning?  I've had both these symptoms for years but they both got worse when I started weaning off the Cymbalta.  Don't know if they're withdrawal symptoms, symptoms from my other health problems or maybe the Cymbalta was helping the muscle pain to an extent??

 

Any comments or advice is more than welcome!  Sorry for the long post (brevity is not my strong suit ), but I am so glad to have found this forum and know that I'm not alone in this!!

[Wagtail]

Hi Tria , yes most of the symptoms you've mentioned can be related to withdrawel symptoms . I didn't have the horrible headaches or muscle pain but I can certainly relate to the others .
Maybe you should stop reducing until you Stabalize & feel better, you might be reducing too quickly .
I had the fear & the chronic worrying , it was disabling for me & if not for the other members on here I don't think I would have been able to cope .
I'm sure one of the more experienced & articulate members will log on soon & support you with good advice on how you're withdrawing.
Hang in there ...

[FiveNotions]

Welcome, Tria, I'm glad you found us! If it weren't for my friends here, I never could have gotten off the "crapalta" as one os started calling it. And we'll do everything we can to help you to get through this!

Other than the nightmares (I had a few hallucinations, visual and auditory instead), I had very single thing you've described....sometimes several at once.

Like you, my emotions were all over the place....I could go from rage to hysterical crying in seconds...with no midpoint for just plain happy in between....I had irrational fears, I had to sleep with the light on so the boogey man wouldn't get me...

Yep,this is the poison leaving your system and your brain beginning to repair itself.

Fishinghat or ThisMoment will be able to advise you on your method...I'm awed that you're able to use one of those scales...when I was where you are on withdrawal, I couldn't count how many fingers and toes I had if my life depended on it! ;-)

I came off cold turkey....the total hardest way....but I was too far into it by the time I found this forum, so I just rode it out....with the help of everyone here.

What I can say is something that you've already seen noted here and are experiencing yourself....the lower the dose you get to the harder it seems to get....

I agree completely with what Wagtail suggests....hold right where you are, or even go back up a little bit, and let yourself stabilize. There's no need to rush this...slow and easy is the sensible approach (not that I did it that way...duh).... I think this is particularly important for you, because you have other serious health issues to manage while you do this withdrawal process.

What dose were you on, and for how long? Was it for the fibro or depression or something else? (Sorry, it's late and I'm not at my best.)

I'll sign back on tomorrow, and you'll be hearing from the others soon as well....

Bravo for doing this Tria, you'll be so glad you did...life after crapalta is worth all the struggle to get off it!

[ZappAlta]

Yes indeed it is w/d symptoms -I too was on 20 mg and went c/t over 8 months ago -symptoms will decrease by about 6 weeks.

[fishinghat]

I agree with everyone. Sounds like withdrawal symptoms to me also.

 

Your bead weighting method is great but as you found out when you get to the lower doses the withdrawal can really bite. You just have to stabile at your current level for a few days and then start back down at a slower rate. I know it is hard to do that when you are getting so close but you have been patient so far. Just a little bit longer.

[tria]

Wow thanks for the replies! It's reassuring to hear other people say, yes I've gone thru that too - it's not in your head!! I started the Cymbalta about 4 yrs ago for muscle pain. Doctors thought it was possibly fibro at the time, but I have since been diagnosed with mitochondrial myopathy, so that is the more likely cause.  I could only take up to 40mg and at first it seemed to help the muscle pain (dont know if it was a coincidence or if it did help) but after about 2 yrs, the pain kept getting worse.  Around a year ago, had me try going to 60mg again. I was willing to try anything, so I stuck with it longer than I had in the past.  Mistake!! I ended up with severe depression, feeling like I wanted to die. Scared the crap out of me that a drug could make me feel like that.  I immediately went back down to 40mg and decided I was getting off this drug.  I went down to 20mg ok, but had problems when I started weaning from there.  I figured out the bead counting, which helped a great deal until I hit this point.  I'm at approx 10mg (going by weight) and I am REALLY having problems.  I upped my dose last week by a few beads which has helped - my mood is stable enough that I was finally able to get on here and post something! I agree with all of you that I'll stay at this dose til I feel stable, plus I'm having oral surgery the end of this week so don't want to upset my system any more than I have to.

 

I've noticed from reading on here that most people lower their dose by a few beads every several days.  I seem to be much more sensitive and it takes me longer to stabilize. I can only drop my dose by about 5 to 7 beads every week or two. Even when I feel more stable, I still have symptoms.  Like now, my mood is better and no nightmares but I still have the nausea and dizziness and some other symptoms.  Is this common?  Right now, I'm figuring I'll have these symptoms until I'm off the drug completely for a while, which is not a pleasant thought. 

 

Also, just a quick question about forum etiquette - I have some questions on other meds people might be taking, on generic Cymbalta, etc. Should I start a new thread under the appropriate topic or continue my post here? Thanks again for the replies, and if anyone else has anything to add, please do so!! I'm open to any and all advice!!

[thismoment]

Hi Tria

 

You are on the right track. Let your body decide how much you reduce. There will always be some uncomfortable period of time following each reduction, but then you kind of level off between reductions. 

 

Go slow. Remember you're healing the most precious part of your being! Best wishes!

[fishinghat]

You can just post your med questions right here if you want too. We will be glad to help if we can.

 

Don't feel too bad about how slow yoou are going. We had one member that could only cut 1 bead at a time!! Patience will win out!!

[ittybittysmitty]

Welcome to the group, Tria! I'm happy you're here...;o)



You're experiencing what most of us can relate to..and I trust that you will find the advice and support you need right now.

I was diagnosed with Fibro in 2006...and understand the pain and fatigue...

To answer your question about the muscle pain and fatigue coming back, I would guess that your body is back to feeling the samebefore you went on it? The Cymbalta took much of my pain away, then once I started weaning, it returned.

Have you tried muscle relaxants or Tramadol for your condition? the Tramadol helps me a little when I'm in a flare.

We're all here for you Tria...thanks for opening up and sharing your story with us!

[tria]

Thanks so much for the encouragement and advice! I know I have to go slow, am working on being patient. With everything else I have to deal with, and now this thrown on top, it's very frustrating.... and sorry, I am getting very cranky tonite - yet another withdrawal symptom. And my head is absolutely pounding, can't stand another minute laying on the couch and it doesn't seem to help anyway.  The pounding headache wasn't bad until one doctor put me on Prozac to help me get off the Cymbalta.  Has anyone else tried this?  She said it was an "easy fix" - haha.  I was supposed to take both the Prozac and Cymbalta for 3 days then stop the Cymbalta and then wean off the Prozac over a week or so.  After day 2, I was a basket case.  I was paranoid, hysterical, terrified - it was horrible. That's when the heart pounding and the pounding headache got really really bad, and I've had it ever since. 

 

Yes I do take tramadol.  I take it every day either for my headaches, muscle pain or both.  It helps to some extent.  Toradol works very well for my muscle pain and helps the headaches too but the pills are murder on my stomach. I don't use it unless the pain is beyond ridiculous.  My previous neuro (who retired recently) used to give me Toradol injections which were great!  In fact, I'm sort of looking forward to my oral surgery because I'm having it done with anesthesia and they agreed to use Toradol in the IV to help my pain. I had this with a procedure once before and felt really good when I woke up! I haven't tried muscle relaxants, though I may ask my dr about it.  I do take Baclofen which does relax the muscles but it's not the same as a skeletal muscle relaxant (not exactly sure how it works).  It works well but I can only tolerate an extremely low dose. I will up the dose slightly when I feel I need to, but it makes me very tired. 

 

I also take Xanax for the anxiety and mood swings.  It works ok, but not great. Definitely wouldn't want to go without it but is there anything else that might work better?  (In addition to my neuro retiring, my pcp moved away at about the same time so I am starting over with a new pcp and looking for a new neuro, just to make things extra fun.  She seems open to working with me to control the symptoms as much as possible but I need to discuss it more at my next visit.)  The mood problems, anxiety, etc are really disabling, I just cant function at all. Don't know if any other drug can help this while I wean off or if it's just a matter of weaning and stabilizing?

 

One last question for now - sorry feel like I am bombarding everyone with questions! When do most of you take your Cymbalta - morning or evening?  I started taking mine at night because it made me very dizzy when I started it. I've wondered if gradually switching it to the morning would make any difference?  Has anyone experimented with this or noticed a difference as to what time of day they took their dose?

[TryinginFL]

Welcome, Tria!  This is the first that I have had a chance to read your posts and I can help a little, I think!

 

I had a headache for 2 solid weeks that made me think my head would explode - I even woke up in the morning crying it hurt so much.  This was at the beginning of the withdrawal. 

 

I also have arthritis and fibro.  I was originally on Crapalta and Lyrica and not long after Christmas I decided they weren't helping me and financially I needed help, so just went cold turkey.  Man, I sure wish I had found this forum before I was into the withdrawal by 2 weeks!  I would have done the bead counting, but that is history now.  I have been off both of these meds for 5 months and 1 week but still have occasional depression but that is outweighed by the anxiety. 

I have a benzo for that, so that is a huge help and I take Hydrocodone for break-through pain.  I don't think I would have made it through this ordeal without those two.

 

I also had tried Tramadol and Baclofen but neither helped me - we are all different.

 

I certainly understand the crankiness (still have it at times) and the crying spells still happen easily.  I can cope with these two if this is what I am left with when all is said and done.  I can't believe it has taken so long but I was on the poison for 4 1/2 yrs - 60mg/day.  Research shows that those over 50 take longer for their withdrawal, so there I am...

 

 I wish you much luck on your journey and will post again if I can add anything else!

[fishinghat]

Well Tria first of all the symptoms are about par for the course.

 

Second of all your dr is an idiot .Prozac is commonly used to switch out with Cymbalta BUT Cymbalta has a half life of 12 hours so once you stop it you go into serious withdrawal in less than 2 days. On the flip side Prozac takes 6 to 8 weeks to reach full effect. Most dr here would cut your Cymbalta by half for two weeks and start to ramp up yo thereur prozac during that time. Cymbalta would be put on minimal dose for weeks 3 and 4 while by the Prozac would nearly be at full dose by the end of week 4 or 5.

 

How long you been on the Xanax? Benzos like that are recommended for short term use only as you build tolerance to them.

 

One thing you can do to make things better is to stay at the same dosage for a while til the symptoms subside. When you get feeling better you can start reducing beads again. Besides the benzos and another ssri (anti-depressant) there is a drug called hydroxyzine that is frequently used. It works as well as benzos, not habit forming and no withdrawal. It may slightly reduce your blood pressure and will cause sleepiness.Most drs use around 25 mg at lunch and again around dinner time to help with the anxiety and a low enough dosage you shouldn't get sleepy. Then take 50 mg at night.. This will not only help you sleep but help your anxiety as well. It may be taken with your benzo (eg. Xanax).

 

In regard to when to take Cymbalta. Well it builds to a rather stable level in your blood wiith in 4 weeks. Remember it has a half life of 12 hoours. So it will be the most active the first 12 hours after taking it. Don't worry about all the questions. We are here to help.

 

Take care.

[tria]

Thanks TryinginFL - Thanks for sharing your story. I did try Lyrica but it made me nearly comatose! I slept in bed or on the couch for days. My mom would come over to check on me, make me eat something, and I'd go right back out again.  Maybe I should try it now and I could sleep thru these withdrawal symptoms

 

fishinghat -  Yes that dr who put me on Prozac was an idiot!  She was the neuro I was sent to after mine retired. Needless to say, I did NOT go back to her.  Thanks for the info on the hydroxyzine. I will definitely ask my pcp about it.  I've been on Xanax for years for anxiety attacks (prior to being on Cymbalta) but my doctors have been ok with it as I've never had to increase the dosage (0.25mg up to 4x a day as needed).   This is the first time I feel like I really need to start taking more so that's something I need to discuss with my doc and maybe the hydroxyzine would be a good option. I've also made an appt with an ND to discuss some natural med options.  At this point, I feel like the more drugs I can wean myself off of, the better off I will be.

 

Regarding taking Cymbalta in the morning vs nite, I'm still unsure. I think I may feel better during the day if I switched to the morning but I feel so awful when I wake up, I'm afraid that may get even worse since I'll have less in my system when I wake up. Guess the only way to know would be trial and error, unfortunately... ugh.

 

Thanks again to everyone.  It's so helpful hearing this advice from folks who have gone thru (or are going thru) the same thing!!

[Brodie]

Hi Tria, welcome ☺ thank you for sharing your story, sounds like you have had a rough trot

I was on cymbalta for 3 years, 60mg a day, and for the 15 years before that all different antidepressants. I also have rheumatoid arthritis. I have been weening off cymbalta for the last 9 months really, and have been off it totally for 3 weeks. I was dropping one generic bead every 2-3 weeks also. I found every time I dropped the dose I was getting more and more terrible pain in my joints and muscle aches and fatigue so the cymbalta was obviously masking some joint pain or withdrawals from it was causing inflammation. I'm still not sure which, leaning towards the latter as the pain isn't quite as bad now as it was when I was weening. Hopefully your pain will also ease a little the further down the weening line you get. But I have since been told that yes cymbalta is used to treat chronic pain.

I have also had the nightmares, the headaches And the mood swings. This snappy cranky person comes out and snarls at my husband and then I feel so awful as I didn't mean it. They have gotten less but still occur. I also cry a lot, and have those freak out moments as well. Where I become paranoid and scared and feel hopeless. Again, as each week goes by they are less.

I was also on lyrica for a while for nerve damage and it was great for the pain and gees I slept well, but gosh I found that tough to get off too, chronic insomnia. That took me about 2 months to get off. i was only on it for one month, then spent 2 months reducing it. Now I am off the cymbalta and cannot sleep to save my life. I have posted on here and had some wonderful advice on some drugs I can try to help me sleep which I will discuss with my doctor on Wednesday.

I think sleep is such an important part of managing depression. With all the side effects slowly subsiding, if I could sleep I think a lot of the other side effects would subside. Being tired can make even the least depressed person cranky, emotional and sad. I was also recently diagnosed with sleep apnea, I was waking up 30 times an hour. So we came to the conclusion that a lot of my depression was actually contributed to by not sleeping properly. Now I have had surgery and before I started weening I was sleeping through without waking 30 times an hour and for a short time started to feel less tired and have more energy and just felt happier. But now I just don't sleep . However people on this site tell me it will turn around so I will keep going, and I know with the support from this site you will too. Hang in there Tria, lovely to meet you, there is light at the end of the tunnel x

[tria]

Hi Brodie - Thank you for the welcome.  Yes it's been a rough ride! The arthritis started when I was 20 (I'm 43 now) then chronic headaches hit when I was 26. Muscle problems got worse gradually over the years.  Then thyroid cancer, which was easily cured Thank God, but now I'm on thyroid meds which can mess with just about every system in your body til you get the dose right!  I was put on the Cymbalta for the muscle pain.  At first seemed to help, then the pain kept getting worse.  It stabilized for a while and is getting worse since I started weaning.  Sorry if I'm repeating myself... I need to be off the computer soon and in bed.  Like you, I have some trouble sleeping.  I take Xanax and take one at night.  Some nights I sleep pretty well, other nights I will sleep ok for several hours then toss and turn until of course, it's time to get up and I have to drag myself out of bed.  The weaning has definitely messed with my sleep, between the nightmares and being wide awake at 3am half the time. Thanks again for the welcome and the reminder that there is light at the end of the tunnel

[GriffinsGranny]

I've been on cymbalta for ten years for generalized anxiety disorder and chronic pain for a bad back. I have to admit--it worked well for me. However, I'm 51, no hormones since hysterectomy at 28 because of heart disease that runs rampant in my family, and gaining 50 pounds in the last three years is not an option. I have a job that absolutely requires me to be stable, patient, and deal with many people and kids on a daily basis. Chose to do this during the summer months while no kids are present at my job. I've hit bottom twice, today being the latest. Left work after crying nonstop for 2 hours, went home and became hysterical with the crying. I've gone from 60 mg to 30 mg in two weeks, started 20 mg two days ago. I'm not suicidal, but have NO interest in life. I don't even enjoy my grandson who is the light of my life. No interest in dressing, bathing, leaving the house. Experiencing drenching sweats, God-awful dreams, something is wrong with my brain, and have seemed to have lost any and all control of myself. I have had NO interest in sex for ten years. My husband may be the most amazing man on the face of the earth--he's patient with me, loves me in spite of everything. This is a terribly negative post, but I spent a lot of time reading posts and THANK GOD, ITS NOT JUST ME!!!! I wouldn't wish this on anyone. I'm afraid friends and loved ones do not understand the magnitude of what is happening--it's like making excuses for my insanity. This forum may save my life, and I mean that from the bottom of my heart. I feel as if I know some of you personally from your stories. Fish, Five, Clara, you've spoken directly to me. Praying for everyone on here--Lord knows we need it!

[Wagtail]

GriffinsGranny you brave soul ... You sound just like me . Ten years on Cymbalta & 10 years of limited sex with my darling husband . The guilt from this alone make me sick . I think God sent him to me to help me through life , he has been by my side since we were 16 years of age .

To think of how we use to be gives me nightmares , we were so happy & compatible , we had so much fun & now it's horrible to know that I can't meet his needs . He deserves so much better I don't know why he stays with me !.
Especially now while I'm going through this diabolical discontinuation journey , he must miss the girl he married & loved , his best friend & mother of his three children .
I pray to God that she will soon return to him & his long patient wait will be worth it .

The shrew that I have become needs to take a hike !!!!:-(((

[TryinginFL]

Wagtail, your post breaks my heart!  You are such a dear and don't deserve all of this upset in your life.

 

It really is hell - and we both wonder if we will ever crawl out.  You are so fortunate to have a loving, solid spouse to stand behind you.  I have been divorced for over 25 years and have no real support system here for myself.

 

Please count your blessings - you have a wonderful family and they all love you!  I love you!  Let us pray that God will help us out of here soon...

 

Hugs,

Liz

[fishinghat]

I know how you feel Wagtail. My wife has been a dream. And TFL, you may not have a support system in your house but you sure have one here!!

[FiveNotions]

How are you feeling today, TFL? Were you able to settle in and get a bit more sleep last night?

That doc of yours sure threw me for a loop by refusing to discuss the alternative meds with you....of course you're going to go home and look them up...we've all learned the hard way to do just that...sheesh....I am trying to give him the benefit of the doubt...I do think he means the best for you, but ....well, you know what I mean.... :-(

[TryinginFL]

FH - I want to hug you....thank you!  

[TryinginFL]

FN - yes, I know what you mean, but apparently he is not accustomed to patients questioning his recommendations and RX's!  That is not what most do - only we who have learned that ignorance is not "bliss"!

[fishinghat]

FN - yes, I know what you mean, but apparently he is not accustomed to patients questioning his recommendations and RX's!  That is not what most do - only we who have learned that ignorance is not "bliss"!

 

You know each time I read something like this I feel so blessed about my PCP. I don't know how many times he has I feel very lucky.

[GriffinsGranny]

You hit the nail on the head, Wagtail! I can only hope some semblance of my former self resurfaces. We took grandson shopping with us today and trying to stay upbeat and have fun was complicated by brain whirls, chest pressure, weak legs, sweating...I'm sick of it all. I only have a week to go before my GP thinks I'll be weaned, but sure having doubts at this point.

[FiveNotions]

GG, that's a hell of a rapid schedule the doc has you on....each one of those drops in dose throws you into more cold turkey withdrawal....dropping too much, too fast.....my suggestion would be to sloooow down.....and, go back up to the 30 until you get stable, then bead count your way down.....

You're describing classic cold turkey symptoms....I know them well, as I jumped off that cliff myself....60 mg to zero in one day....

That you were able to go out and do all you did today, and also be working is amazing to me!

You're one tough Granny! ;-)

[Wagtail]

Wagtail, your post breaks my heart!  You are such a dear and don't deserve all of this upset in your life.
 
It really is hell - and we both wonder if we will ever crawl out.  You are so fortunate to have a loving, solid spouse to stand behind you.  I have been divorced for over 25 years and have no real support system here for myself.
 
Please count your blessings - you have a wonderful family and they all love you!  I love you!  Let us pray that God will help us out of here soon...
 
Hugs,
Liz

Thank you Liz , you are right & I appreciate it .
don't forget that you have a family here who love you & support you as best we can without actually being in your living room.
Just ask & we will be here for you 24/7 ..xxx

[Wagtail]

You hit the nail on the head, Wagtail! I can only hope some semblance of my former self resurfaces. We took grandson shopping with us today and trying to stay upbeat and have fun was complicated by brain whirls, chest pressure, weak legs, sweating...I'm sick of it all. I only have a week to go before my GP thinks I'll be weaned, but sure having doubts at this point.

Griffins wonderful nanny ... You are following in my footsteps .. Two steps forward & one step backwards ... I can see you now on that shopping trip .. Putting on that brave ( clown ) face , whilst feeling like you're about to drop dead . I often look around me @ all the smiling happy faces & think OMG if only they knew how I am hanging on by a thread ... BUT we do don't we ?... We hang on & we get through it & come home & crash on the lounge with a long sigh ...
I truly believe that every day in every way we are getting better & better & soon we will be one of those HAPPY SMILY FACES .. & they will be genuine smiles ..
We can do this & we WILL DO IT for the sake of our darling little grandsons !... Mine is just 3 yrs old & is a miracle baby , born after 5 miscarriages & will be an only child to his devoted parents . We owe it to them to be strong & stay around to see them grow into wonderful young men .. I will if you will ?... Xxx

[TryinginFL]

Wagtail, I am out of "likes" again, but I LOVE your post! 

 

I am happy to hear that you had a wonderful day w/your hubby today - you are truly blessed!

[FiveNotions]

TFL, how are you feeling today? Anxiety? Sleep? Alprazolam? ;-)

[TryinginFL]

FN...

 

Thanks for asking  -  I don't know when I will ever have a decent night's sleep again, but hope it will be soon.  Could not go to sleep again for over an hour - took Alprazolam and still couldn't sleep, so got up and watched part of a show I had recorded.  Finally got to sleep around 3 or so, but have been awake since 7.  I am so tired...

 

I did take another .5 mg Alprazolam before trying to sleep the 2nd time...