17 replies to this topic

[Monique]

Hello Everyone,

My name is Monique, I've been on Cymbalta for a little over a year now. I am looking forward to coming off of the drug.

My story:

I went to my doctor asking for help with depression I had been experiencing for about five years. She suggested Cymbalta, I was first put on Cymbalta, it was 30mg once a day for a week and then 60mg once a day the following week. I've been on 60mg once a day ever since.

After the first couple of weeks of taking the drug, I felt great, energized, motivated; the depression was gone, I felt less stressed and irritable at work, I finally felt happy; things were looking up. Then after a few months, I started to notice some red flags: I sweated A LOT, after a couple of hours of taking the pill I'd feel nauseous, it got harder and harder to either fall asleep or stay asleep at night, I was constipated ALL THE TIME and I had lost the need to feel aroused, I experienced sudden twitches of my legs when I would go to bed, and noticed that I seemed to be losing considerable amounts of hair. Most of this was listed on the drug notes that came with my bottle every month or were things that I attributed to my switch in work schedule or just effects of me getting older (I'll be 30 next March) so I didn't feel the need to worry about them. I had mentioned the nausea and the twitches to my doctor only for her to suggest that benefits of the drug certainly outweighed those side effects, at the time I agreed with her.

I can't remember when it was that I expereinced my first "brain zap" but when I felt it I knew that it wasn't normal. I've missed doses of Cymbalta a few times since I've been on it (I'm laissez-faire when it comes to meds for some reason) one time, I couldn't remember if I had took my dose the night before, I woke up and it felt like if you shook my head, you could hear my brain rattling around in my skull; it felt "loose" in there is the only way I can describe that feeling of course I felt sick, nauseated, drained. Another time I woke up after skipping a dose and it felt like my eyes were being pushed out of my head by my brain, that was the worst headache I had EVER experienced. Then there was the time I wasn't able to get my prescription because I had lost my insurance because I had lost my job. I went TWO days without it. I knew that my prescription was still good so I just "sucked up" the fact it was going to cost me $170 for my month's supply. When I went to the counter to pay for my pills, I told the pharmacist (who was nice enough to give me his discount and I paid $135 instead of $170) that it felt like my head was going to "lobb" off. BOY, the relief I felt once I took that first dose of 60mg again ... I felt like a junkie.

Now here I am, wanting to get off of the drug. Like I mentioned in the title of my post here, I've been a long time lurker. I've been reading the stories here and had I known then what I know now ... you get the idea. Still though, I was hoping that I could turn to you guys for advice.

First, what questions should I ask my doctor about coming off of Cymbalta? Should I discuss any of the stuff that I've read about on here? Are there any labs that I should have done prior to any weaning? What if he comes at me with a quick two week/every other day wean instead of a gradual taper like it's been suggested, should I be concerned that he doesn't know about the adverse withdrawl effects being shared? What type of monitoring should happen once I begin weaning, periodic blood pressures (mine stay in the normal range, except one time I was 144/90, YIKES)? Serum blood levels? How about lifestyle changes, dietary changes? Sleep changes? Exercise? Maybe these are the questions I should be asking my doctor at my appointment next week ...

Second, what's up with that site, theroadback.org? Is that legit? Has anyone tried it?

Well, thank you for your time in reading this. I hope the best wherever you are in your quest to be rid of this drug. I look forward to the input.

Thanks,
Monique

[cookie]

Dear Monique:
I can so relate to your story. Cymbalta was also a lifesaver for me at the beginning but after a period of time it just stopped working. And also lost my libido and my legs were restless when going to sleep.

I never realized I was losing my hair until I started looking some family pictures from the last years, and saw my picture and realized I had such thin and poor hair. I have always had thick and lots of hair. Since I started weaning things got worse, I am losing more hair than ever, that remain on the brush. I have read that neurotrasmitters are linked with hormones, could it be a change in hormones what is causing the hair loss??

I also had the worst headaches i´ve ever experienced.

Unlike you I have never missed a dose since I started taking cymbalta.

It is so good that you are planning ahead the questions you are going to ask your doctor on your next appointment.

First I have a question for you....Does your doctor agree that you stop cymbalta??? The first time I mentioned to my doctor I wanted to quit, he said that I need to take antidepressants for the rest of my life, and that he considered that cymbalta has worked for me.

It will be useful to discuss the stuff you´ve read about on here. However, what I do not know is if wether you want to mention the source of your information (this site) or not. I´ve read on some doctors being very opened to learn about the experiences exposed on this site, and they even read this site themselves. But there are others who will not rely on a site more than their knowledge or the information they know about a medicine.

MAYBE YOU COULD ASK THESE QUESTIONS:
-What withdrawal symptoms (emotional/physical) have other patients experienced when quitting this antidepressant? How long will the witdrawal symptoms last??

-Are there any labs that I should have done prior, during and after to quitting??? Before weaning I did a blood test, and found that I had glucose/insulin problems.

-Which would be my weaning plan??? If he mentions the every other day approach, then tell him the stories you mentioned on this post on you having missed doses and how you felt. Also tell him about the half life of cymbalta and ask him if there is a way you could take a certain dose of cymbalta –everyday-. Also ask him how long the weaning will last?.

-What things can I do to diminish withdrawal symptoms??

-How can I tell if the emotional symptoms I am feeling are withdrawals or my depression coming back?

-Once I am off cymbalta, what antidepressant do you suggest??? Vitamins/supplements?? etc

Monique you didn´t mention if you plan to quit all antidepressants, or you just want to be off cymbalta specifically. In my case I want to see if there are other natural alternative therapies.

Concerning your lifestyle changes, I´ve found that exercise and nutrition help a lot with my depression reducing my anxiety and improving my mood.

Once you start your weaning process it is important that you report to him your symptoms periodically.

I hope this helped monique, and please keep me updated on your doctor response.
Hugs
Cookie

[cookie]

Monique:
Haven´t heard from you in a while....how are you?? how did the appointment with your doctor go??'

[Monique]

Monique:
Haven´t heard from you in a while....how are you?? how did the appointment with your doctor go??'

Hi Cookie!

I know that it has been a while since I posted last. I have some updates and questions that could be answered by doing somemore reading on here.

I hope that things are well with you and yours!

Monique

PS- Thank you for asking.

[Monique]

Here is an update about my weaning experience:

In my last post I expressed my desire to come off of Cymblata (YAY!)but actually coming off the stuff, as we all know it's a pain in the you-know-what (BOO!!!).

I go to my doctor armed with print-outs and drug book in hand. I ask him the obvious questions: What are the side effects of weaning? Have any of your other patients experienced negative reactions to weaning? What kind of weaning schedule do you recommend? Are there any labs that I should do? He gives me pretty convincing responses to my quesitons/concerns and sends me on my way with 30mg samples to start weaning. I get to day six and I find myself in the ER with a BP of 157/92!!!! Horrible headache, disoriented, nauseated, the usual. I tell the ER doc about the weaning and tells me to go back on my 60mg dose and to wean much slower. YEP.

I'm a Veteran so I decided to take advantage of my VHA benefits and enroll in their system (something I had put off doing for six years). I now have a primary care doctor through the VA, I met with a psychologist, and a psychiatrist and I'm scheduled for some therapy sessions in about a month. That said, when I spoke to the psychologist: gave him my history and motives for wanting off of Cymblata, he suggested that I wait until I find more stability in my life before I take any sort of steps toward becoming free from anti-depressants period let alone weaning of of something like Cymblata. Considering my situation, I have to agree with him. I discuss this recommendation with my psychatrist and he then suggested that I switch to Prozac. Woo hoo, great idea except he wants me to go from 60mg of Cymbalta to 20 mg of Prozac all of a sudden. Uh, ok? I tried the 20mg of Prozac Tuesday w/o a dose of Cymbalta at all and I felt the withdrawl symptoms come back on again so I took my normal dose of Cymbalta w/o the Prozac and now I'm fine. GRRRR!!!! There is some sort of tapering process to switching from one drug to another isn't there?


So here I am back to the drawing board. I am determined to getting off of Cymblata, I have hope.

[cookie]

Dear Monique:
Thank you for updating your progress. I hadn´t heard from you in a while.
I´ve also had high blood pressure.
For the past 5 years my doctor has said to "wait until you find more stability in your life before you take any sort of steps toward becoming free from anti-depressants". I think that stability is never going to come. Actually I think nobody´s life is stable, there are always going to exist external stressors, what differs from one person to the other is the way we perceive life. For me "stable" people are the ones who react differently and strongly to external stressors. That is why I decided to start weaning, because if not, then it would never be the right time for my doctor.

I am not a doctor, but it seems that going from 60mg cymbalta straight to 20mg of prozac is a huge step. Remember cymbalta works on 2 neurotrasmitters (serotonin and norepinephrine) and prozac only on serotonin. So it makes me think that if you stop cymbalta all of a sudden you wont have the norepinephrine aid. Read a lot through this site, because there had been other people who have slowly switched to prozac, I just do not remember how they did.

I am down to 10mg from 60mg. I still have a long journey ahead

hugs
Cookie

[Monique]

Hi Cookie!

Well, I have been thinking alot about your post and what you said about the stability. Well, I decided to forego the Prozac. My goal is to get OFF of the meds, not add to the mix. I also decided that the best approach is to count beads, and LUCKILY, I will be able to do so since my primary doc will give me samples. I guess the bright side is that I won't have to pay for the Cymbalta any more!

I guess now I'm a little confused as to the way this bead counting business works. There's a percentage to calculate? The number of beads in the capsules are different? WHAT?

Anyway, Eli Lily can go blow one for all I care! I live in Indiana, I have this idea of making a special trip to the front doors of their facility and giving them all of my leftover beads. Hell, maybe we all should! Gather together, get the media involved, and personally hand them over the leftover beads, protest style!

Well, I'm off to read more on here, since you guys know way more than my doc does.

Take care,
Monique

[cookie]

Dear Monique:
Sorry for my late response. For some reason I am not receiving emails from this site when I receive new posts. Actually I bumped into your post when looking for "hair loss" information. You mentioned that you had hair loss during the medication. Since I started weaning my hair loss has gotten crazy.

There are many posts explaining how to do the bead count.

[MoniqueKim]

Anyone know how to combine profiles on here?

[MoniqueKim]

My last post here was Oct 2010 and I am still taking the 60mg and have made more than a few attempts at weaning but had failed miserably!

I am going to the doctor tomorrow to renew my Rx and hopefully ... once-and-for-all ... do what I need to do to rid myself of this poison!

How is everyone?

[MoniqueKim]

Alright, so I went to my appointment yesterday and to my dismay, the thinking is STILL that dosage can be cut in half and missed in order to wean off of this drug! WHAT THE HECK?!?!?!

Anyway, so I was given a two week supply of 30mg and a script for 20mg. I am supposed to take the 30mg every day for one week, then take 30mg every other day for anyother week. When that is done, I should take 20mg everyday for two weeks, then take 20mg every other day for a week, then nothing at all.

^^^YEAH ... THAT'S NOT GONNA HAPPEN!

I decided to do 10mg drops for the next month. I have to make due with what I have and this seems to be the better approach, unless I have a reaction to it.

I took my last 60mg dose Monday night. I was out of Cymbalta Tuesday night so no med. Yesterday, I got my samples and my script filled, and took 50mg last night before bed and so far so good. I haven't felt any brain zaps, moodiness, nausea. I have had a bit of a headache and what seems to be a hightened sense of touch (weird, I know).

My plan:

50mg x 7 days
40mg x 7days
30mg x 7days
20mg x 7days

From there, if things go ok, I could just take 20mg for a few months, then start weaning from that at a slow pace.

I have felt it important to take supplements while I'm weaning. I've been taking a Prenatal multivitamin that has DHA and EPA in it as well as an Omega 3,6,9. I added Algal DHA and a Super B-Complex with Vitamin C and folic acid.

I am hoping that that all of this works!

[MoniqueKim]

Second day on 50mg and things are still okay. I have noticed some tingling in different parts of my body that go away. I've been able to sleep, even in the heat (I have no AC, just fans)! And noticed that I didn't feel tired during the day like I usually did on the 60mg.

Eating is okay as well, I still have an appetite and there is no GI upset to mention. Phew.

[Lundeliz]

MoniqueKim,

I'm glad so far so good! Keep posting and let us know how it goes. Good luck!

[MoniqueKim]

I have made it through one week on 50mg! Hmmm ... where to start ... well, the most noticable difference is that I can sleep! I don't toss and turn anymore. I wake up a little foggy but it goes away about an hour after I wake up. I'm sure it means that I should plan my mornings better so that my head is clearer by the time I have to do anything that needs me to be completely alert. I've been eating less and chosing healthier things to eat. I haven't began any exercise yet; it's on the bill though and I'm taking my supplements religiously. I haven't had any crazy emotional episodes: anger, frustration; in fact, I felt that I expressed my worry over my son being diagnosed with ADHD in a very healthy manner. I mean I cried, what parent wouldn't though, I was just essentially told that my son isn't 'normal'.

Tonight is my first dose of 40mg: the journey continues.

[MoniqueKim]

Got myself down to 20mg!!!

[Allison]

Got myself down to 20mg!!!

How did you get down to 20 mg? Did you count the beads? I have been on 60 mg for almost two years and have tried two other times to quit this stuff. I am on a taper now since July 29, taking 10 beads out a day for 10 days, then an extra 10 (20 beads) the next 10 days. So, it will take me a while to get down to nothing. I also have 30 mg capsule for when I get to that point of being at half with the 60 mg. Do you know how many beads are in a 30 mg capsule? Did you remove beads daily for a certain amount of time? I see people putting bead counts on the blog, but when I counted it was a different count. Any input would be appreciated.

[MoniqueKim]

How did you get down to 20 mg? Did you count the beads? I have been on 60 mg for almost two years and have tried two other times to quit this stuff. I am on a taper now since July 29, taking 10 beads out a day for 10 days, then an extra 10 (20 beads) the next 10 days. So, it will take me a while to get down to nothing. I also have 30 mg capsule for when I get to that point of being at half with the 60 mg. Do you know how many beads are in a 30 mg capsule? Did you remove beads daily for a certain amount of time? I see people putting bead counts on the blog, but when I counted it was a different count. Any input would be appreciated.

Hi Allison,

I got a script for a month of 20mg and a 7 day sample of 30mg and split it up so that I could do 10mg drops a week for a month. I've leveled out at 20mg and so far things are okay. There are times that I feel some slight brain shivers. I noticed that I forget how to spell sometimes and stop midsentence because my mind goes blank for a moment. My sleep has gotten better and actually have more energy coming off of this stuff than I did on it!

Like you, I was on 60mg for two years and I also made a couple of attempts to get off of it. Actually, I just went to my nurse practitioner today and asked if she could give me a script for the 20mg for the next month so I can taper off of that ... counting the beads of course. (cursed Eli Lily for only making Cymbalta available in 60, 30, and 20mg capsules!!!)

If you're tired of counting beads (mind you, you'll have to count them eventually, there just isn't as many in 20mg capsule as there are in the 60mg) and you wanna brave the 10mg drops (depends on how sensitive you are), you should try it. I wish you luck on whatever you choose to do.

Lemme know how things go!

[Allison]

Thanks Monique!! I am counting out 3 extra beads only per day now as I started feeling really sick at the minus 10 beads for 7 days. Not sure which is better to do. I should be done with it by Oct. 11 and will start a very low dose of Lexapro right towards the end. Lexapro has a longer half life so it helps the cymbalta weaning process I hope, like Prozac does. Then I am going to 5-HTP two weeks after stopping everything. I will ask my dr. about a 20 mg. capsule of cymbalta. I have 30 mg. but don't know how many beads are in them so will just keep counting out the 60 mg. ones. Have a great evening!