8 replies to this topic

[MaureenV]

I am a lurker. I very rarely post on discussion forums. But this is different, in so many ways. You folks can help me.

I'm 51 years old, vigorous woman with a full, sometimes frenetic life. Childhood abuse survivor who held it all together for 30 years, real successful entrepreneur, leader, mentor. Just after 9/11, I lost Dad to cancer. Then after 4 IVF cycles, I got pregnant and miscarried at 5 months. The entire facade crumbled with disastrous consequences. After several bad bad years not to be discussed here, 5 diagnoses and a dozen med combinations, I finally "stabilized" 3 years ago.

Current diagnosis, bipolar 2 w/major depressive disorder and borderline tendencies. Meds, Cymbalta 30mg, Lamictal 200mg, plus 8mg loperamide.

Long-term Cymbalta symptom #1 -- colitis. Can't control bowels without loperamide. And boy does that add to the "major" in the depression scale. I have to obsess over what I can eat, trying to avoid every bit of fiber I can, so I can retain the meds long enough to absorb them. I have so many days of stomach/bowel/colon problems, I just don't want to eat. But this is now the only symptom I live with except...

#2 -- brain fog. Big problems with word retrieval. I'm an eloquent person, writer and teacher. I now can spend a full minute trying to find the right word I'm looking for to complete a thought. It's like a brain fog ... words, names, concepts i learned long ago, short-term memory seem to disappear for days at a time. I know that much of this can be attributed to aging, but it's more than that.

All the other symptoms are long gone, or at least they've become part of "normal" life. As a yoga teacher, I practice radical acceptance, and work hard.

But this just isn't the life I want any more. I want off the Cymbalta so I can relax, eat, think clearly, and find who I am without being propped up for so long. I can't stop the Lamictal, as it keeps me from rapid hypomanic cycling, and it has enough of an antidepressant effect, it may suffice. At last that's what my pdoc said last spring when I tried to taper down to 20mg. i didn't succeed that time, and went back up to 30mg.

So I'm trying again, determined to use all my skills and faculties, and share more than I normally do. I still have some of the 20mg Cymbalta capsules, so I moved from 30mg to 20mg on Sun 2/28. So far, I've got nausea and balance problems, and a few odd headaches. The GI symptoms persist, but they will until al Cym is out of my system, I desperately hope.

If you choose to, watch this space, and i'll try to keep posting what happens. I haven't seen anyone here withdraw after many years, so maybe this will help those who are considering it.

Hi b, quite a few here have withdrawn after several years. It's not an easy thing to do.

I've had ulcerative colitis for over 20 years, mostly under control. One of the reasons I didn't want to continue with Cymbalta after taking it for only a few months was slight flaring of UC. Having had serious flare ups over the years I can well understand the obsession with your GI tract!

Make sure you keep your potassium up, incidentally. I can chronically low (as in under the normal lowest level, not just low 'normal') potassium for 20 years due to another condition. Once that was solved three years ago, my UC has improved considerably.

I also had problems when coming off Cymbalta - one day constipated, next the opposite, but it slowly settled.


regards, Maureen.

[Junior]

Hi B

Just wanted to say - be wary of taking St John's Wort while in wdl. It acts like an SSRI.. you don't want your brain chemicals altered further at this point.

Keep up the good work.
Excellent description of the bipolar disorders btw. I have a sibling with bipolar 1, a parent with bipolar 2 and i'm aware of cyclothymia as I've studied psychology (spec interest in mental health).

Regards
Junior

[MaureenV]

"Nonetheless, I'm feeling aches in odd places, like my jaws. As many of you know, Cymbalta is the accepted treatment for fibromyalgia, one thing I've thankfully been spared. What I'm curious about now is why I have two fibro symptoms as I'm weaning off. More studying to do!"


Unfortunately this isn't uncommon with Cymbalta withdrawal.

I had pain in all sorts of weird places. Some of them were 'weak' spots: places which had been a problem (sometimes only mildly) in the past. I had pubic bone pain during pregnancy 20 years earlier which recurred. I had pain in my hands and feet which I hadn't had for 40 years, when I suffered secondary encephalitis. It all settled down fairly quickly once I started doing a very slow wean. Interestingly, paracetamol was not very helpful with any of this pain, nor the headaches I was getting. Seems to be in a category of its own!


On the UC, I've been working hard losing the weight I put on while on Lexapro for six months (prior to changing to Cymbalta). My UC is about as good as it gets at the moment, but my digestive system does not like changes to the volume of food in my system. I very warily tried Metamucil, which I've never tried before, starting much more slowly than they suggest. Now I'm up to the normal dose, it's working brilliantly for me, in a way that fibre from food would not. It may of course be because the UC is well controlled, and you may of course have tried everything on the market, but just thought I'd mention it.

I guess you know there's a Yahoo health group for UC?

regards, Maureen.

[i_was_b]

Hello, me again. Finally got the nerve to register.

I've forgotten to mention the dry cough. It comes on every night as I get tired. I don't know if it's part of the withdrawal, but I didn't experience it before now. And the sweating is still so bad. I'm now keeping 2 extra t-shirts next to my bed

I also ordered size 0 gelcaps from Rite Aid. I'm getting something ridiculous like 500 because it's the minimum order. So if you want some, let me know, as I'll have enough to share. Looks like I'll be bead-counting soon.

b

[cmonk]

4-15-10

Hello again. You probably think I jumped off a bridge. No wait, that was the thought 7 years ago! (Actually, it was to drive into a tree.) But no, I'm here, and increasingly alive. One of the great joys right now is to see how marvelous life can be even as I work to leave Cymbalta behind.

To catch up, quick review on why I've begun to quit Cymbalta. First and foremost, I want to see what is the best "b" I can be. I feel like a highly-functional automaton now, stable but indecisive and prone to impulsive, eventually destructive behavior so as to get the occasional high (figurative...no drugs or booze.) Second, I can no longer tolerate the side effect of colitis. A day lost to diarrhea, pain and being anchored to a toilet is in itself a cause for deep depression. And then there's the increasing feeling of stupidity -- intolerable word retrieval problems, inability to do even the simplest math without a calculator, inability to remember if we've already seen a movie i'm renting. Adding 8mg Immodium to my daily load of Cymbalta and Lamictal, avoiding all fiber and living in a mental fog...I hit a wall, and in fury, made the decision that the Cymbalta has to go.

Now the symptom roundup and technical discussion, and finally, a plea for your advice on big decision.

STATUS
(1) I'm at plateau of 20mg. It's been 6 weeks now (Sunday may be the start of week 7. But more on that below.)

BAD NEWS
(1) Still have the sweats, very bad. It's like hot flashes but more acute, as I get drenched 3-4 times a day. I carry extra clothes in the car when I leave the house, and keep an extra pajama top on the night table. I don't understand why this hasn't diminished, so I'm attributing it to the fact that I am just barely post-menopausal.

(2) I still get the shakes, but mostly when I've not eaten enough protein. My Cymbalta-induced microscopic colitis has required me to limit my fiber intake, so I struggle to keep the vegetarian diet I've lived with for the last 2 decades. So I'm moving up my "selectarian" scale and eating more eggs and dairy. More on Cymbalta and colitis in my next posting. I found a brand new research study I want to read before posting my thoughts.


B
I have been off this crap for 2 months. It took 6 months to get off and I thank God I did. I can not tell you what to do all I can tell you is I feel better now that I did. I have more energy and I can think clearer. I have fibromyalga , PTSD and suffer from depression. I am lowering my dose of tranzadone from 75mg 37mg. Trust me is a walk in the park compare to the cymbalta experience.
I had flu like symptoms for 2 month SUCKED big time.Brain zaps. There were times that I did not think I would make it. When I finally got off I hated the world. I had so much anger I ended up taking some herbs from the health food store and it helped. Then I went to church. That has worked well to.I have just decided to get all the chemicals out of my body. I feel like I have been drugged for years.
The people here helped me a lot . Maureen, Junior and Nurse Debbie were the BEST!
By the way the way you write is the way I would think of things I felt a connection when I read your story.

Keep in touch and best of luck to you!

Candy

(3) Still eating oddly. Under-eating one day and over-eating the next. i'm starting to note what I eat in my journal, and moderation is returning, but I am vigilant.

(4) Mis-typing. My brain is doing better with finding the words because i'm training with lots of crossword puzzles and writing. But the word won't come into my fingers. I have to hit delete and restart typing a word every 3-4 words into a phrase. "Look" easily becomes "leek" -- that's how bad it is. I am so afraid that is permanent now after 7 years on this hellish drug.

GOOD NEWS
(1) Nice news on my BP2 symptoms. Hypomanic episodes are still happening, but I can identify them more readily, and can make conscious decisions to slow down, sit down and write, and avoid people for a while. I'm still cycling, as I always will until there's "cure" for bipolarity, and just as often. The good news is that lessening the Cymbalta has NOT accelerated the frequency of my cycles. Nor am I sinking as deeply. And only a couple of impulsive moves over the last

(2) My colitis symptoms are letting up a lot! I've been able to halve the loperamide (generic form of Immodium) from 8mg a day to 4mg. And I've even tested that with some fruit with good results, even though I still haven't tasted an apple peel or potato skin in 7 years.

(3) Super good news -- for the first time in years, I'm starting to assert myself, express unpopular opinions and push back. The automaton is becoming more human!! This alone justifies my decision to start on the path away from Cymbalta addiction. I just have to avoid starting arguments just for the high. When the impulse hits, I open the journal.


Do you remember your high-school trig? Think of a sine curve with unpredictable periods, which is why I have to journal. In bipolar 2, the upper curve never peaks in the full mania of a bipolar 1 cycle. So I never go too high to start with (thank goodness.) The disaster has been how low I can sink on the lower part of the curve, which led to the first diagnosis of major depressive disorder. Lamictal is designed to create a fixed amplitude curve, so it has antidepressant component. It was added to the Cymbalta I had already been on for 3 years, and with a shitload of hard work, I now live within a range closer to the fixed. The big question in my case is whether when the Cymbalta goes away, will the bottom fall out so far that Lamictal and therapy alone will keep me "sane."

So here's my plea for advice.

I finally just now left a message with my psychiatrist (let's start calling him Dr. C) about what I've done, six weeks after the fact. (Kids, don't try this at home...work with her/him if you can.) And I only did it because I'm running out of Cymbalta 20's (again, don't do this. It's just not wise to fly solo.) Dr. C will be calling me back tonight. I did announce my decision to my psychotherapist three weeks ago (we'll call him Dr. N), and promised to stay at this level another 3 weeks to see if I stayed relatively stable, which I have.

We've been arguing for the last 2 sessions about trying to consider this an experiment. By this definition, we are supposed to keep something static to serve as a control. One of the I'm working through a very tough decision I've never been able to make, and now that I'm reawakening, I want to jump to a choice. So he wants me to keep the Cymbalta load at 20mg until I reach my decision in a concerted and considered way. Sounds like more of the same to me, and I am very unhappy about his "strong request" to me to not drop further.

My goal is no Cymbalta. Dr N says my goal should be to determine what is the minimum dose at which I can live a good life. We are at odds.

So tonight I'll ask Dr. C to write new scrip at 20 vs. the previous 30mg, and listen to his opinion. But I want yours. Should I keep dropping, right now? I bought empty gelcaps and have made 3 that are approx 17mg. I know you are not physicians, but many of you have travelled this road. I have waited 7 years to start finding me again. How do I stop stopping Cymbalta now that I've started? Is this an experiment to see where I go, or am I impulsively deciding that the only place to be is at zero?

Thanks in advance for whatever you can share.

b

[Junior]

Hi 'b'

Your difficulty finding words is very common in withdrawal and DOES improve over time. It used to frustrate the crap out of me. Especially seeing as I had completed my 4th yr psychology studies just a few months earlier! It will pass. Just give it time. It is all part of the healing process.

As for the decision: This is my thinking - it is your body, your illness and your journey. Your doctor is there to assist you but at the end of the day, it is YOUR decision. Any doctor who doesn't respect that has a power distance problem and should be ditched. IMHO

For the record I have a sibling with bipolar 1 and know that medication is very important to her overall well being. WHAT she takes, and what you take, is very much up to the individual.

One thing I've learned in life is to trust my intuition. If my cognitive side can't come to a logical, all things considered decision, then I go with what I feel. That is what I recommend you do. I suspect you already know what you want. Go with that feeling.

Cheers
Junior

[cookie]

Dear Friend:
I am new in this forum. As I read, the thing you and I have in common is that we have been taking the medication for a long time. I have been taking Cymbalta 60mg for 5 years!!!. I also feel like you say "I want to find out who I am" (without the medication).
I admire you, because you have dealt with so much in your life (childhood abuse, Dad loss, miscarriage, etc).....
I do believe you can regain your life, and again be the eloquent person and succesful entrepeneur.
I think you have a strength which is that you are a yoga teacher. I definitely believe, there must be a natural way to boost neurotrasmiters (serotonin, etc) by changing lifestyle. I´ve read about yoga and since I started yoga, I´ve felt so much better.
Sorry if I can´t share information on withdrawal symptoms, but as I said I am new in this forum, and haven´t yet started a weaning process (but plan to do it in the near future). Please post your progress, since it will be useful information to know how is the weaning process in a person that has taken the medication for a long time.

[Antonia]

Dear B, First I want to tell you that I find strength and encouragement through you testimony. I have been on for 5 years and dealing with seriuos withdraw after my last pill 2 1/2 weeks ago. The fogginess and headaches are worse than ever and the stomache cramping and horrible puffing up of my stomache persist as well. I refuse to give up, however because something that hurts this much to come off of CAN NOT be good for me in the first place. Today I sent my daughter to work with my husband for take your child to work day, only to findout at noon that it is actually supposed to be thursday. To top that off, I panicked at the time she was supposed to get off the bus because I was at a friends house and not home. I called her bus service to have her dropped off at my friends, only for them to call me back fifteen minutes later to inform me that my daughter had not gone to school that day. I am well aware that I will not be getting mom of the year for that slip up!! Anyway, I just wanted to tell you I am saying a prayer and positive thoughts your way. Please dont give up getting off this monster drug!!! I have heard the general rule of thumb from several doctors, and other cymbalta users, that the typical withdrawl period is about 2-4 weeks per every year you were on it. I am also aware that the fogginess may be permanent damage and irreversible, I am trying to learn to live with it just in case, by writing myself sticky notes, so when I arrive at my destination, I know why I drove there in the first place. I just wanted to tell you , you arent alone, and I wish you the best. Good luck. Antonia

[Antonia]

The nightsweats are horrible!!! I wake up soaking wet and have to peel my soaked night clothes off, get a towel to dry off, and then fold up several towels on the bed so I can go back to sleep. Nothing is worse than waking up panicked and soaked, its embarrassing. I can't even cuddle with my husband anymore for fear of drowning him. ....I suffered these nightsweats on year 3 of my 5 year run on cymbalta, they came 3-4 nights a week while on the medication. Now that I am pill free for 2.5 weeks, I have noticed they are down to about 2 times a week or so. I will take all the babysteps achievements i can get at this point.
Antonia