Cindy’s story of recovery

Below are (somewhat edited) emails between me and a wonderful woman I’ve met through this blog. She has an amazing story of recovery, which she was happy to share with all of you but hesitated as she says she is still in process. I asked her, “who is not in process?” and suggested she start her own blog. In any case it is an amazing story and it is an example of someone coming off a whole hell of a lot of drugs in a relatively quick withdrawal. There was a comment thread recently and I’ve been having conversations with friends and my husband about whether there is a risk in coming off of drugs more quickly. All my withdrawal groups are indeed very cautious. Well Cindy basically did this on her own and trusted her gut and got off more drugs than me in about a year. (yes I said more drugs than me!! I had not ever met, even in all the years working with the “severe and persistently mentally ill” someone on more drugs than me.) So hers is a story to think about as I am beginning to despair never getting off of the drugs at the rate I am going.

She is fresh. She got off her drugs close to a year ago. That means she is still healing. It takes time.

The edited emails:

From Cindy:

My name is Cindy. I just turned 46 years old and I think I’ve just begun perimenopause on top of the bipolar, anxiety, post traumatic stress and borderline personality disorder diagnosis. Geez. I’m divorced, no kids (thank goodness) and I haven’t worked in 20 years. I live in Florida with my dog. More later.

From me:

hey there Cindy,
You know that PTSD gets diagnosed as bipolar and bpd all the time. The trauma is potentially your only real problem. (I know I don’t know you well enough to know that so if it doesn’t fit dismiss it!!) But if it does fit a good therapist who is trained in PTSD is what is called for–not meds and more meds.

let me know what you’d like to know—oh and can you share with me your withdrawal story? What drugs you were on at the end, what doses and how long it took to get off of them.

From Cindy:

Morning Gianna.

Well, where should I begin? First of all, thanks for mentioning that PTSD can be misdiagnosed as bipolar and bpd, it’s something that I’ve believed for some time now. Some days I think that’s what has happened in my case and then other days I’m just not sure. Maybe I’ll never know and maybe it doesn’t really matter. I don’t know. But thanks, it was nice to hear it from someone else. That’s why I love hearing about other people’s experiences…it makes me feel less alone and less ‘crazy.’

Okay, now about my meds. A couple of friends of mine who didn’t know me ‘before’ when I was on the meds (recent friends–8 months or so–because I shut out anyone and everyone in my life a long time ago and am only now starting to build new friendships again) have been telling me that I should think about getting back on meds. They think I’m not doing well. They think I don’t want to be on meds because they’ve heard that bipolar people don’t like to take meds. Blah, blah, blah. They won’t even consider the idea that if the meds had worked, I would have no problem going back on them. Shoot, I wouldn’t have gotten off them in the first place! IF they had worked. And IF they weren’t so poisonous. I only wish there was some magic pill, but there isn’t, and my physical health is just as important as my mental health. Why can’t they see that? It’s very frustrating.

I have been on nearly every antidepressant, antipsychotic, mood stabilizer, tranquilizer imaginable. Because these friends don’t have any idea what I’ve been through, I got out my copy of The Pill Book and went through the list of drugs and highlighted everyone I could think of that I’ve been on in the past twenty years. I perused the list fairly quickly and might have missed some and even at that the list included 39 meds! Astonishing, isn’t it? And they think I don’t know what I’m talking about. I know my body and I know what I’ve put it through with all those years of poisons. I won’t do it again. Not ever. And getting off those meds was NOT EASY. No one could understand unless they’ve gone through it or are going through it themselves.

A partial list is as follows: depakote, effexor, elavil, gabitril, klonopin, lamictal, lexapro, lithium (all types), neurontin, pamelor, paxil, prozac, restoril, risperdal, seroquel, stelazine, tegretol, tofranil, topamax, wellbutrin, zoloft.

Due to horrendous side effects caused by these medications it was necessary to take many other ancillary medications. Meds for constipation, irritable bowel syndrome, GERDS, acid reflux and skin conditions, just to name a few. Immediately after I got off my meds (within a 5 month time period) I had gallstones and had to have my gallbladder removed, I had kidney stones, I had pancreatitis (I did some research on this just this week and discovered that seroquel can cause pancreatitis), I had a colonoscopy and they found 5 polyps, they found a nodule on my right ovary, I had to have emergency surgery to remove a benign tumor in my stomach and I was hospitalized three times for heart problems to which they couldn’t find a cause. A heart specialist finally declared that I suffer from ‘heart spasms.’ So, all of that in a five month period, right when I had begun coming off my meds. And people have the nerve to say to me that they don’t think my meds were the cause. Maybe not, but maybe they were the cause. I believe they were. I have always taken care of myself and never had any health problems before. I’ve always eaten well, exercised, never smoked or took drugs and not too much alcohol.

Getting off my meds began in September 2005. I was so incredibly sick on all my meds and with all the side effects that I just couldn’t take it anymore. I was at the end of my rope. I had no quality of life. By this time I was so bloated (I had gained almost 100 lbs and weighed 250 lbs), my skin was horrible (I had hundreds of zits all over my neck, scalp, chest, shoulders and back), I was so constipated that I was only having bowel movements every three to four weeks, my balance was so off that I had to walk with a cane, my speech was impaired and I had trouble getting a full sentence out, my mind was fuzzy and dull, my eyesight became bad, my teeth began crumbling, and that’s just off the top of my head. I couldn’t take it any more. And beside all that, I was still experiencing depression and mania and psychotic thinking. I was a mess.

Not knowing what else to do, I looked in the phone book to find a nutritionist. I believed that if I could find the right ‘diet’ it might help alleviate some of the side effects. I didn’t really know what I was looking for and the woman I ended up going to specialized in Chinese herbs. I was so foggy and confused most of the time that I didn’t know then and I still don’t know how I really ended up in her office, but there I found myself. She was a little old Irish woman with red hair and outrageous clothes and she did a bunch of things that seemed like ‘mumbo jumbo’ to me at the time, but now, two years later, I don’t think it was. I thought she was a bit of a quack but I was sooo desperate. First she tested my Ph, then she looked into my eyes and finally she did some ‘magnetic’ kind of thing wherein she touched her knee to my knee and put some herbs into the palm of my hand and she could ‘feel’ what herbs my body needed and didn’t need. Again, I wouldn’t have cared if she did a rain dance or smoked a peace pipe, I just needed someone to help me.

Well, she told me at the time that she had been diagnosed with schizophrenia when she was in her twenties and had been on meds and in/out of psychiatric hospitals for most of her life but once she found out about herbs and other healing modalities she was able to get off her meds and she had been off of them for sixteen years! She told me that she wasn’t advocating me going off my meds and I had no plan of going off my meds since I had been told for twenty years that I was going to have to be on these meds for the rest of my life. I had also been told that I would never be able to work and my ex was told that if he didn’t continue to support me and take care of me I would end up living out the rest of my life in a state hospital! I just wanted help with the side effects.

At that time I was on the following: Seroquel 1200mg/day, topamax 800mg/day, lamictal 500mg/day, wellbutrin 450mg/day and klonopin 6mg/day (prn up to 10mg/day). Whew. I had been on that combo for about a year. Klonopin is the only med that I was on the entire 20 years.

So, Ruth started me off with a huge complement of Chinese herbs. About 20 different herbs per day, anywhere up to 50-60 capsules per day and that was on top of my 18 psych pills per day. Along with the herbs she put me on a very restrictive list of foods to eat. I can’t remember it all now, it was based on my blood type, and there was no dairy, no meat, no fish, almost no fruits, very few vegetables and a couple types of nuts and grains. Almost immediately I began to feel better. I began having bowel movements every day, my mood lifted, I started losing weight, my skin improved and so on. Within a month I thought I might be able to lower some of the doses of my meds. I spoke to my psychiatrist and Ruth about it and they both agreed that would be okay. I began with one med (I don’t remember which one, how much or in what order) and then the next and before you know it, I was completely off of one and then the next and then the next. I was only able to stay on that strict diet regime for about 4 months and I took the herbs for about 8 months (I think). The herbs were costing about $400/month and then Ruth’s fee was about $100/month and my ex started to get pissy about it. I told him that my psych meds had cost about $2500/month and psychiatrists/therapists had cost about $1200-1500/month, wasn’t he pleased that I had lowered it to only $500/month? but of course, he wasn’t happy. Why? I think he wasn’t happy because he didn’t want me to get well. Who could he blame his miserable life on if not me? So, by the summer of 2006 I was on my own. I did fairly well and by December of 2006 I was finally off all my meds! (and the herbs, too).

In January I read my first book about living organically. I started delving into that area. Now I’m eating organically and I’ve changed everything (from what I put in my body, on my body and use in the house). No chemicals, no pesticides, no artificial coloring/fragrances, no parabens, no SLS’, and on and on. No bad fats and no bad sugars, however, I still eat some fats and some sugars. I’m not that good, yet. I’m only taking a few supplements; multi-vitamin, magneseum, B vitamin, eye health vitamins, perimenopause herbs and digestive enzymes. I was taking fish oil supplements but didn’t know if they were necessary or not. For the past 7-8 months I’ve just been experimenting. It’s expensive to eat this way and take all these supplements, so I’m trying to streamline and take just what is necessary. My ex has put my house up for sale and although he is still supporting me, he keeps saying that’s about to end. I know I need to get a job but I’m scared to. I haven’t worked at all in 20 years and I only had a couple of inconsequential jobs before that. I was never able to hold a job and the stress can put me into a tailspin so quickly. Maybe now I’ll be able to hold a job (if I can even get one) but I’m so afraid of it making me sick again. Once I get on the ‘crazy train’ it doesn’t take me long to get to the end of the line….he, he, he.

Hope that wasn’t too long and boring. I just wanted to share, don’t know if it gives you any hope or not. Anything you could share with me would be gratefully appreciated. I’m hosting Bunko tonight. Have you ever heard of Bunko? That’s one of the benefits of being off my meds. I’m beginning to have a bit of a normal life. I had lost the ability to socialize and hated to be around others because I felt ‘judged’ or felt like it was too much of a struggle to try and fit in. My mind was often so fuzzy and slow and my mood so unpredictable. But now I can have 12 women over to the house, prepare hor d’oerves, etc. and actually look forward to it. I hosted it last month and it was so much fun and the women had such a good time that they’re having it my house again this month. That, in and of it itself, is remarkable for me. For the first time in my life I have hope for the future.

Thanks again for sharing, Gianna, and I hope you have a good day.

Cindy

From me: (largely edited as you know my story)

Oh…one question–how fast did you taper off the drugs? How long did it take? You are the only person I’ve ever met who was on more drugs than me. I’ve always been on more than anyone I had met. I think we should both win prizes

From Cindy:

Dear Gianna,

I agree….I say we both win prizes. What should we win? I would be satisfied with being able to stick my tongue out and say “I told you so” to those people who have doubted me when I’ve told them how many different meds I’ve been prescribed and at what doses. They’ve always looked at me and said, no doctor would prescribe that many meds and at those levels. Insinuating that I must be exaggerating or not remembering correctly or that my doctors must have all been quacks. On the contrary, I don’t believe I’ve had bad doctors, I think they just didn’t know what else to do. Hmmm, this isn’t working so let’s up the dosage or let’s add this med or that med. Maybe that’ll work. My ex used to complain that he thought I was a guinea pig to these doctors and I used to defend them and say, what else are they supposed to do?

Anyway, as I said, I don’t really remember how long it took me to taper off the meds but I think it was about a year. September 2005 to September 2006 and then three additional months for klonopin. I didn’t really know what I was doing and I didn’t have a plan — I just did what felt right. I didn’t keep track of what I was doing either, I wish now that I had. If I remember correctly, though, I think I lowered the dose a little on one med and waited to stabilize, then lowered it a little on another med and waited to stabilize, etc. Again, I never had the intention of going completely off of them, I just wanted to be on less of them. After I lowered the dosages significantly I was able to one by one stop each med altogether.

Don’t get me wrong, it wasn’t easy. In fact, it was quite difficult and I believed at the time that I would have to start taking them again. I suppose by that time it was more of an experiment than anything else, but low and behold, it’s been a year now and every day I feel stronger and stronger. I now believe that I won’t ever have to go back on them. I believe that you can handle whatever moods or anxiety you might experience through diet and exercise. I think I forgot to tell you this too. In February of this year I started exercising again. I hadn’t exercised for the past few years because I had gotten so heavy, my balance was so off and most of the time I just didn’t feel well enough to exercise. In February I decided to go for a walk. At that time I could only walk as far as my mailbox. It took two weeks before I could walk around the block. Now I walk almost 4 miles a day and I’m training for a half-marathon in January!! It truly feels like a miracle.

While I was on the herbs that Ruth gave me, my body began detoxing. She told me it was going to detox and I didn’t even know what that meant or why my body was going to detox. I thought ‘detox’ was just for street drugs or alcohol withdrawal. I didn’t really realize how sick my body was. And I’ll tell you, ‘detox’ my body did. It wasn’t any fun at all. Geez, I haven’t thought of that time much since then and I had forgotten how bad it was. I suppose you have to be as desperate as I was to be able to get through it. I’m glad I didn’t realize what I was in for or even what I was going through while I was going through it. I remember calling her all the time and telling her how bad I felt. Many times it felt like a bad case of the flu. I had chills and fever and bad mood swings. Those periods would last for a few days and then I’d feel better for a couple of weeks. She used to say that my body was going through a ‘health crisis.’ She said it was normal and I believed her. It was a good thing she was a nice old grandmotherly type or I might have doubted her. After four months I remember asking her how long my body would go through this and she said at least a year maybe two. I wanted to die. She was right, however. It takes your body a long time to heal itself after so much poison and toxins and stress and all. It’s better now and it was definitely worth it.

Best to you,

Cindy

From Cindy again:

Dear G —

I know my last e-mail was soooo long, but I forgot to tell you about my fears of going off klonopin. Over the years klonopin became my friend. I loved my klonopin and I never went anywhere without it. I didn’t go a day without taking it and I knew I could count on it to help me get through anything. While most of the other meds were only somewhat effective, klonopin always did the trick. If I experienced a little bit of anxiety, klonopin would calm me down. If I had a major panic attack, klonopin would calm me down. Whenever a med would stop working, klonopin always continued to work. While I was tapering off the meds I decided that I was not going to stop taking klonopin. It had always worked, was still working and I didn’t feel like it was contributing to any of the awful side effects. Was that just because I liked how it made me feel? My guess is yes. The only reason I stopped taking klonopin last December was because my ex wasn’t paying for my psychiatrist anymore, my refills had run out and even if the doctor would have written me another prescription without seeing me again, I couldn’t afford to have it filled (my prescriptions had always been charged automatically to his account and he closed the account). So I was forced to stop it. I was not happy about that, but I managed. I was scared to death of having a panic attack and no klonopin. I was scared to death of having anxiety and no klonopin. What was I going to do? Well, guess what? It’s been over a year since I’ve had a panic attack. Not one in all that time. And as far as the anxiety goes….I know this sounds hokey-dokey but I’m learning how to meditate, I practice deep breathing, I listen to classical music and I massage pressure points in my body to release the toxic energy. It works, it really does. I didn’t think it was possible to live without all my meds and especially my faithful klonopin, but it is possible and it’s so much better. Does that mean I will never have another panic attack or anxiety…I doubt it, but I know now that if I do I will be able to get through it without klonopin. It’s gonna be okay.

That’s all for now.

At this point I was shocked. Cindy had been on 6 mg of Klonopin and up to 10 mg prn. That is the largest dose I’ve ever heard someone being on. I’m on 3 mg and got up to 6 mg prn a day and that tends to be a very high dose in the withdrawal groups I’m part of. Also she went off quickly–this also appeared amazing to me. I’ve talked to people who went off of 1 mg of Klonopin and it took a year. I asked Cindy about this:

are you telling me you cold turkeyed off of 6 mg of Klonopin??? that is incredibly amazing and I wouldn’t believe it at all if it wasn’t coming straight from your mouth. It takes years usually and people have really nasty withdrawal syndromes–you give me hope girl….I have 3 mg to get off of.

Her response:

Not exactly. I knew I was running out of klonopin so for the last few months I tried to make it last as long as I could and started taking it only when I really, really needed it. So my last refill (100 2mg tabs) lasted me for the months of Sept, Oct, Nov and part of Dec. Then nothing. Yes, I’ve heard that it’s very difficult to get off of and the last time I was hospitalized there was a woman in there who had to be detoxed off of it and had hallucinations and all the other bad stuff that goes along with it. I’ve heard horror stories about it and I don’t know why it didn’t happen to me. Another weird thing is that I never built up a tolerance to it and I hear that most people do. I was on a huge dose of it, I know, but 2 mg worked as well for me after 20 years as it did in the beginning. I suppose I was very fortunate in that regard. But even so, if I can get off of it anyone can!!

Thanks again, G.

There are people who would call three or four months on that amount of Klonopin cold turkey. I have corresponded with one other woman who had been on 1 mg of Klonopin for 10 years and got off in two weeks. It gives me hope. Maybe this won’t drag out forever after all. Maybe all the people in the withdrawal groups are there because they are the ones having the really hard times. Then maybe we all brainwash one another. I don’t know.

Anyway, what an awesome story of courage and determination! Thank you Cindy for offering hope to everyone who might grace my blog.

—

Update: checked-in with Cindy a year later her response is very validating. Her recovery sound and solid. Take note she did not get terribly ill for the length of time I have but certainly it was no picnic either. I point this out only to show, once again, we are all very different. Today she says:

Gianna, I’m so glad to hear from you!  I’m doing great — it’ll be two years since getting off and staying off all meds on the 5th of December!  I have two part time jobs that I love and I’m feeling wonderful — other than menopause and aging!  My mind is clear and alert and I’m truly at peace.

She is so happy and healthy it seems that thinking in terms of mental health is a thing of the past. What a joyful thing to hear.