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jmim: My recovery story

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jmim

Since I noticed there was a call for positive recovery stories around here, I thought I'd add mine. I was put on antidepressants (imiprimine) at age 19 for depression and ativan for panic attacks. Shortly afterwards, I started having "hypomanic" episodes (because of the antidepressants?). I was then put on lithium. A few years later, I was still depressed and Effexor was added. Couldn't afford that anymore and went back to Lithium, Imiprimine and Ativan. This went on for about 15 years.

 

After talking with a new psychiatrist about my doubts around my bipolar diagnosis, I attempted to go off of all medication. Made it off of the lithium after 14 years, which felt like a huge step. Had been off of the Ativan already for a while, so the last was the imiprimine. That didn't go so well. I know now that I just went too fast, even though I thought I was going slowly. I started having panic attacks almost immediately and cried at nothing. Felt totally out of control. I tried to tough it out for about a week and couldn't handle it - my psychiatrist started me on Cymbalta. Immediately I felt less anxious and depressed, but I also felt oddly agitated. I started clenching my jaw pretty much all the time, giving myself headaches. I developed all sorts of nervous habits, but I was so glad the anxiety and depression was gone that I didn't care.

 

It took a year and a half for me to really try again, this time with another psychiatrist. We went even more slowly - it took about six months if I remember correctly. I had been on 60mg of Cymbalta, and I initially went to 40 for a few weeks with no problems. Same with 30, other than a few brain zaps, so I stayed there only a few weeks as well. At 20 the zaps got more frequent and I was a little more anxious but it was bearable. Below 20? Bad news. I tried the every other day thing, but I was a mess. I felt like I had the flu and I was just distressed all the time. I'm in grad school, which I'm sure didn't help things as I was constantly under pressure. I ended up using empty capsules I already had, filling them with about half of a 20mg capsule, so I could do 10/day. I stayed here for a long time, until the flu feelings went away and I thought I was coping better with day to day life. What it eventually came down to was actually a project I was doing for my MFA degree - a performance in which I counted the number of pills I had taken during my time as a psych patient (using empty capsules so I could see how big the pile was - to my best estimate, the total was 36,835) I did "the count" in nine hours and forty-one minutes, and while I had been planning on tapering even farther for a few more weeks, I had more motivation at that moment in my life than I had ever had seeing that huge pile of capsules, so I stopped. The day I counted those pills was the last day I took one. A week later, my father passed away. The universe has a strange sense of humor sometimes. I'm not sure how, but I didn't go back to the meds, and I'm so glad I didn't. I let myself grieve as much as I needed to, and the people around me expected me to be a mess, which was pretty much the case.

 

It's been 7 months, and the physical symptoms are gone. I'm still getting used to the rest of it though - having emotions again is wonderful and also difficult, especially dealing with my dad being gone. I was numb for so long that it was hard to remember how to manage feelings on my own. I'm a worrier by nature, and an emotional person. I cry a lot, but I'm learning that that's better than not feeling.

 

So there it is. A success story (at least so far). I have faith that this is the real thing though. I feel like myself again, for good and for bad, and I'm working on my coping strategies post-medication. It can be done :)

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Altostrata

Thank you for joining us to tell of your success, jmim. Congratulations!

 

I would have liked to have seen that pile of 36,835 capsules!

 

How long did it take for you to taper off Cymbalta all together? How long did it take for you to recover from withdrawal symptoms?

 

Did you do anything that helped the withdrawal symptoms?

 

What was the pattern of recovery from withdrawal you experienced?

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jmim

Thanks for the welcome! You actually can see the pile if you go to my website and click on photography -> 36835 (www.jodiemim.com). I still can't believe the size of it, honestly.

 

My total taper was about 6 months and until the last 20mg, I really didn't feel much withdrawal, to be honest, other than a higher anxiety level than I had been used to. Then the brain zaps started, as well as nausea and body aches. I was irritable as all hell, and weepy a lot of the time. But I noticed that it was the worst when I first dropped down a dose, improving slightly over a week or two and then stabilizing. I know this isn't the case for everyone, and many people have much longer periods of symptoms. I think I just want to make sure people in the middle of it know that it's not always years!

 

I'm still recovery in the emotional sense - I'm remembering what it is to feel things in the moment, get upset, cry, etc. But I'm also remembering how to laugh, enjoy sex again, cry from beauty as well as sadness, which I'm sooooo grateful for. The last weeks of withdrawal were definitely the hardest physically (especially going from 10 to 0 - I didn't count beads after 10mg, I just stopped). For me it was mostly feeling like I had the flu all the time, and having brain zaps, as I said, along with weepiness and irritability. But those symptoms left altogether a few weeks after I stopped for good. Not pleasant, but much easier than some horror stories I read during that time, which is why I wanted to post my story - to give people in the middle of this mess some hope that they might not suffer endlessly!

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Altostrata

OMG, what a beautiful huge pile of pink medicine capsules!

 

So it took you a couple of weeks to stabilize after a dosage decrease. That makes sense.

 

You're lucky you recovered a few weeks after going from 10mg to zero. Some people might have been more sensitive to a decrease like that.

 

Did you ever have any problems sleeping when you were tapering?

 

How would you describe your emotional adjustment? Were there stages you went through?

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jmim

Thank you! I'm particularly proud of that one.

 

I actually still have trouble sleeping. Because I was taking meds regularly (I was always a good girl about it!) my body had a routine and I fell asleep pretty easily. Now I'm having to do that work of regulating on my own. Not so easy! We live in a noisy area, and I find it difficult to shut it all out at night. My brain is also far more active now! Good for my art practice and life in general, not so good at 1am. What's interesting is that this is how I always was before meds, it had just been so long that I'd forgotten. Even as a child I had trouble falling asleep - my brain just doesn't like to shut up sometimes, and I think best at night. I've taken to using earplugs and sleeping with a fan on, reading books before bed and not the computer, etc. Sometimes it works better than others. I've found that caffeine, as much as I LOVE coffee, is really my enemy. If I have it after about 2pm I can't sleep for the life of me. So I watch that too. What I've realized is that this in NOT pathology, it's part of being human. We worry. We fret and think too much. And we have to manage it.

 

Emotionally, I seem to ping back and forth between incredibly grateful to have been given a second chance and incredibly angry that I was put on this path to begin with. I was technically an adult when I was diagnosed (19) but I certainly didn't have the wherewithal to understand what was happening to me! I was depressed, yes. I had just gone away to college and didn't have many friends. I had tried drugs for the first time (pot and acid. hallucinogens are also not my friends!). I didn't know what I wanted to do with my life and it was hard. But I wasn't bipolar. I was never bipolar. The ADs I was given changed the way my brain worked, and I'm still pretty mad about it at times. (hence the artwork, the counting, etc. it's pretty cathartic). I also have to deal with the fact that I am just a really sensitive person. I cry easily, but at least I can now. I get anxious about things all the time, but I'm dealing with it as best I can.

 

Having a really supportive partner has been invaluable too. He doesn't understand, per se, and I have to explain a lot and remind him where my emotions are coming from, but he really, really tries to let me have them and not take it personally. It has to have been hard on him, but he's also really proud of me, which means a lot. If he had any doubts about whether or not he thought I could do this, he hid them well :)

 

I don't want to come on here and sound all pollyanna-ish, as I know how much other people are suffering RIGHT NOW trying to get through this. But I do want people to know that I did. 7 months off isn't proof I'll always be as ok as I am right now, but I did get through my father's passing meds-free, as well being in grad school and now dealing with a cross country move in August (with very little $$ to do it). I actually think getting through this 7 months has given me more inner strength as I've achieved something people told me for 17 years I wouldn't be able to do.

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jfrank17

What an amazing story and an amazing photo. Very very inspiring. I am so sorry for the loss of your father, I cannot imagine how it must have been to deal with that in the midst of withdrawal. Thank you so very much for sharing your story.

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InNeedOfHope

I so wish my recovery could have been like yours.

 

It is interesting reading what you say about the jaw clenching. That was one of the first negative side effects I had starting up the Cymbalta. The doctor said it was an anxiety side effect because of my worrying. I said well I can be driving or just washing up, not thinking about anything really and it just spasms and he just wouldn't believe me.

 

Now in these stages of wd, this has turned to inflammation, swollen glands and lumps in my throat.

 

You say you were always sensitive, so was I! I could easily cry at something both sad and joyful. You are right some of us are just made that way, it does not mean there is anything wrong with us.

 

I believe in the first instance so many cases of depression/anxiety are caused by poor diet, over use of anti biotics meaning that we don't absorb nutrients so well and the fact food doesn't actually contain the same nutrients as 50 years ago. Also if we have a lot of stress in our life I think it drains and uses up reserves in our brain. If someone has lots of security and positive life experiences I guess their connections are stronger.

 

Communities are spread far and wide these days and there isn't the same support there as in years gone by.

 

I am glad you made it through! Cymbalta is tough to beat. I would be interested to know if you had any more physical symptoms.

 

Sorry for your loss, life is so hard and cruel at times, but you are right you are coping with strength and it is inspirational that you are. I wish I could be like you.

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jmim

Thanks for the kind words, guys. InNeedOfHope, no one believed me that the jaw clenching was related to the Cymablta, but it totally was. I've been a worrier my entire life and never clenched my jaw before. It started with the meds, and not only gave me headaches but wore my teeth down a bit too. I'm sorry yours seemed to have even more negative an effect! The dental problems have actually been a big deal for me, financially and physically with being on antidepressants so long (17 years total). The dry mouth side effect was a huge problem for me from the start and I went from having somewhat ok teeth to something like 9 crowns by the end of it all. I tried all the special toothpastes, etc, but nothing worked. Me dentist once told me it would cost over 10,000 for me to really fix my mouth. Who has that laying around?

 

I think for me the initial depression and anxiety was caused by not having enough faith in myself / self esteem as a teenager (I had been teased mercilessly as a kid) and then going away to college when I wasn't ready to be on my own. There were family issues that exacerbated this I think, but losing that sense of support being away from home at 17 was a tough one for me. I had never done drugs (or drank, actually) and started smoking pot and even tried acid. I'm actually not anti recreational drugs for some people, but for me it was bad news... I had a really bad acid trip that completely shook my faith in reality as I knew it. It was the final straw, I think. I had been teetering on the edge of some sort of depression before then anyway. I think back and feel sorry for that teenager, you know? It was too much for me. I think a stronger support system would have made a huge difference, and that's why I came home from college. Unfortunately, that was also when I started anti-depressants and this long road of being on meds. I was having panic attacks and having trouble leaving the house, and I can't fault my mom for taking me to a psychiatrist, she just wanted to help me. And honestly, in a way it did, I'm just not sure about the cost... and what would have happened if we had had alternatives that didn't involve meds. I'm almost positive that my bipolar diagnosis was a result of the antidepressants and i not getting along - I had never had irritability, rage, racing thoughts, etc like that in my life! I felt out of control. Enter the lithium, right? And more antidepressants. Ugh...

 

I wish you guys health and contentment. I'm still looking for it myself, as positive as I can sound about my recovery. I actually had a really rough couple of days - hormones are a killer for me. Suddenly I'm weepy and irritable and really depressed, and now without meds I don't sleep as well. When I get overtired I am a complete disaster. But I finally got some sleep last night, so here's hoping...

 

I'd also like to add that if my first psychiatrist had been like the one I'm seeing now (although probably not for much longer) I think I would have been far better off and had more hope! She has really supported me getting off of meds, and believes in meditation, exercise, diet, vitamins, support groups, talking, CBT for anxiety, etc. Gives me hope that not all psychiatrists are blind to the idea that meds aren't always the right answer.

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jmim

Communities are spread far and wide these days and there isn't the same support there as in years gone by.

 

This is a huge one for me... We don't have the kind of communities that would be ideal for mental health. I feel that we're so much more isolated than past generations, but maybe that's just nostalgia for the past. Community (however you find it) is key to living a "happy" life though, no doubt.

 

InNeedOfHope, how far into WD are you? How are you coping?

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Altostrata

I got jaw clenching in withdrawal and destroyed a couple of fillings before I got a night guard, which has helped a great deal.

 

jmim, is your doctor knowledgeable about tapering? If so, I'd like to add her to our list here.

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Nikki

Wow you did a marvelous job in getting off drugs. It's so good to know that it can be done.

 

Jaw clenching is an issue that began when I sent on an ssri. It is a side effect.

 

You have the patience of a Saint :D

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MrAnxious

update jmim :) curious how you are doing?

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Hopeinahpwr

Jmim,

Thank you for your inspiring story, it really gives hope!!!!

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elbee

Wow, so many similarities in our stories . . . age of onset, starting with depression and panic attacks, drug use / bad trip experience (a lot like how I experience panic attacks, I've always wondered about that). I can even relate to (in some way) appreciating the meds when they were prescribed. My panic attacks were so bad, I'm not sure what I would have done. I like to think I could have weathered the storm without the meds, but who knows. I am where I am today, and the only direction is forward.

 

Thank you for sharing your story of courage!

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Prozac20

Did you have weakness or fatigue after stopping ? If so how long did it take for it to go away ?

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ChessieCat

Hi there,

 

The staff at SA are wondering how you are.  We'd love to hear how you are doing now.   Would you mind dropping by and giving an update?

 

Thanks.

CC

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FarmGirlWorks
On 6/9/2012 at 11:15 PM, jmim said:

What it eventually came down to was actually a project I was doing for my MFA degree - a performance in which I counted the number of pills I had taken during my time as a psych patient (using empty capsules so I could see how big the pile was - to my best estimate, the total was 36,835) I did "the count" in nine hours and forty-one minutes, and while I had been planning on tapering even farther for a few more weeks, I had more motivation at that moment in my life than I had ever had seeing that huge pile of capsules, so I stopped. The day I counted those pills was the last day I took one.

❤️❤️❤️ * I am working on a visual of WD symptoms/descriptions by reading Success Stories and just that has been so helpful in reminding me why we all are getting off the corporate poison known as psych meds/drugs. Loved this!

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