The next chapter?

So I mentioned in a comment on someone else’s blog I might not continue writing. And I may not, but for the time being I will continue with the purpose of this blog which is to document my journey off meds.

At the moment I’m terribly disillusioned. I have withdrawal effects that have lasted about two months since my last Risperdal taper. I made two tapers after not tapering Risperdal for several months (having switched to Lamictal for a few months when the going got rough the last time I was doing Risperdal) The two tapers consisted of a total of 1/8 mg. I did a water titration at 1/16 mg two weeks apart. That’s a mighty small dose and I’m still feeling it. Breggin recommends tapers no bigger than 10%. Well those tapers were more like 2.5% which is often considered normal in some of my withdrawal groups–but holy crap–we are truly talking YEARS to withdraw here and I may have given that fact lip service but it truly sounds unbearable right now. I’ve already been at it 3 years (only one that has been really intense–but it’s not supposed to get easier towards the end–it gets harder and it’s still looking like it’s a least two years if not more away.)

My brother’s dead and my PMS is so nasty I can barely stand it. How do I continue?

I feel deflated. I no longer feel confident. I have no idea if what I want is possible. Can I get off all the drugs??

Someone left a comment on my blog today. It’s basically an advertisement for a clinic in San Fransisco that withdraws people from psych meds. I called them. They claim to do it in 10 weeks for a mere $10,000. Maybe it works for some people but I quizzed the guy on the phone and I seemed to know more than he did. He was shocked when I told him I’d had a bad reaction to SAMe. Considering I heard from at least 6 – 10 people about SAMe doing frightening things to them when I wrote about my experience here, I’d hope that someone running a clinic would have at least as much experience as I have. I can’t believe I somehow reached a bizarre percentage of people who had bad reactions to SAMe. And 10 weeks to get off of drugs? How can they possibly sell themselves that way. They’ve got to be full of crap. I checked out their dietary and nutritional guidelines and they are very similar to mine. They have some sauna deal that they add in–claims of sweating out the toxins.

He was not the doctor and from doing some research it seems possible that the doctor may know what he is doing–but I remain highly skeptical. I tried calling his office, but he was out of town. I’ll interrogate him too. It’s a desperate attempt for some hope. I want more direction. I’m tired of feeling like I’m walking in the dark. But no more walking into a doctors office without an interrogation. No more wasting money. I’m starting to think they are all full of shit whether labeled conventional or alternative. They have a box and if you don’t fit in you’re out of luck. (oh, to make things clear–I’m not in the least bit entertaining the residential stay–that is insane and probably dangerous but I am curious to pick the guys brain on nutrition and diet–he does consultations by phone and my family lives near him so I could conceivably see him if I needed to.)

The best information I get is on the internet. Here on this blog and others and in the email groups I’m part of. Those of us in withdrawal, those of us having completed withdrawal, and those of us seeking alternatives together. Why do I want a person I can see in the flesh to tell me I’m doing it right? Why do I still hope there is an expert out there that I can talk to on a regular basis and feel guided by?

I’m back home and the business of living my life is staring at me in stark contrast to my brother’s death and it’s finality.

What should I do with this temporary gift called life? I need some ideas. Right now I’m doing nothing that makes me feel like I could possibly say I’ve lived a life worth living.

Take this post for what it’s worth. My rage and pain in grief. I’m showing it to you for the sake of “documenting” my journey.

Post script: My husband just read this post. He made an interesting observation. He said I didn’t sound as dispirited in my writing as I seem to be in the present communicating with him. When I reread it it seemed kind of powerful and loud to me. The truth is I am dispirited, but I wrote this post from my heart too. I clearly have conflicted feelings and I don’t think I show the truly dispirited part of myself on this blog hardly ever. She is here inside me though right now, feeling great despair.

Let’s hope a brighter post awaits us all.

10 thoughts on “The next chapter?

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  1. I think it’s okay to give yourself time to grieve, like in months. Life is a continual process in search of something else or meaning, and sometimes in the search we forget to live the moment. It’s flat out okay to lay on the couch and cry, take a walk and piss and moan. I also did the cold turkey thing w Seroquel and though it was awful, it’s done. I understand what you mean when you feel your writing didn’t expose the true deep grief you are feeling, compared to what your husband sees you as in person. The grief you feel now, quite possibly cannot have words for it, this I know, it’s my current residence of my spirit. But one thing I can promise you, is that life goes on, which is obviously too simple in phrase, but it does, and so will yours. Most likely a new dimension of you will appear here, and your readers will benefit from your current pain and struggles. Best, –Stephany

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  2. Sara,
    Also, I’m not so sure I’m stalled. I’ve corresponded with one woman who took several months breaks at times. She successfully completed a very complicated withdrawal and now has a child that she couldn’t have had on the drugs.

    Nonetheless, you’ve made me think and I’ve talked to two very important people in my life today. One who has cold-turkey withdrawn and my husband.

    I realize that regardless of all the anecdotal stories I have (and I do have access to hundreds) I have no hard data. We don’t really know why some people who withdraw quickly have permanent damage, though it’s passed around in withdrawal circles that it’s because they withdrew to quickly. I see on the other hand that people who withdraw slowly also have serious problems for a very long time as well. It may only be the damage of the drug use and perhaps have nothing to do with withdrawal in both cases. Nonetheless there are scores of people who first did a cold turkey only to go back on drugs to tell everyone that the way to go is slowly and that is what they do. But how many cold turkeyers are out there that disappear and I don’t hear from them again because they are not in the groups? Not sure. But I am in some groups that are human rights related full of people who have come off drugs without the help of withdrawal groups and most of them tell a story of taking it slow too–though often not as slow as the groups I’m involved in generally dictate. The cold turkey success stories are not frequent. (I realize there is something between cold turkey and painfully slow as well)

    Also your point about drawing it out making things worse– Well, it’s something to think about–Bottom line there are no systematic studies with control and comparison groups. It’s unlikely there will ever be such a thing. It’s a terrible shame and those of us taking on this horrible task have to live without answers and have only our guts to follow. It’s not a comfortable place to be in. I do look to my fellow travelers. There is a lot of diversity between cold-turkey and taking years. Thanks for the food for thought.

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  3. Cindy,
    I sent you an email but haven’t heard from you. My email is giannakali (at) gmail (dot) com

    Thank you everyone else for all your kind comments. I’m not up to answering everyone but it’s been nice hearing from all of you over the last week and a half or so.

    Some of your messages have been particularly healing and all of them have been greatly appreciated.

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  4. Peter Breggin didn’t call me back and frankly his updated edition to his book didn’t impress me in the least. Also he is the first to say that someone who has been on drugs as long as I should take years. I firmly believe there is no rushing this.

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  5. I know I shouldn’t be spouting stuff when I have no real scientific basis for it but can’t help myself. It does occur to me that there has to be a balance between withdrawing slowly enough to keep from blowing the brains out and quickly enough to forestall further “damage” physically and neurologically. Staying on the same dose is not necessarily a “neutral” or even a stabilizing stance. Dependency (and damage I’m sorry to say) must increase with every pill you take don’t you think, especially a benzo? While I certainly don’t advocate withdrawing from more than one drug at a time or, God forbid, cold turkey, I do wonder if there are ways to do it more quickly. You can’t be certain that all the pain you have now is just withdrawal pain; it could be pain from increased dependency and the pull for higher doses too. I think a quicker withdrawal must bring intense pain, but might also forestall further damage and decline (have you read A Million Little Pieces — that’s illegal drug withdrawal but we don’t stay on heroin or cocaine even though the withdrawal process is awful). I do kind of see this as something that should probably be undertaken on an inpatient basis but of course realize options for that are almost nonexistent and if they are available probably prohibitively expensive. What do you think about trying to get help to do it more quickly? I was fascinated by that place in SF — it’s too bad you didn’t know about that until after you got home even though I couldn’t agree with you more that promising the world is a big mistake and rather naive.

    I hope in a way you try to contact Peter Breggin — I think he does this withdrawal stuff full time now. Surely he must know something that can help you in your stalled situation.

    Forgive my presumptions in all this as I know no one has done more research or talked to more “survivors” than yourself so you know more than anyone. I’m just vested myself in a funny way in finding a way out for you.

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  6. Dear Gianna, Ama is absolutely right. I have very little to add to what she said and would never have been able to say it so well…now is not the time to be making any important decisions, don’t let that busy mind run away with you. You are hurting and in pain and you have to let the grief have its head for now. Please look after your good self…now is not the time to figure out the answers to any big questions! Ama is right, the stuff will resolve itself, it’s not something we can control. Your existence is fine and dandy as it is and doesn’t need justification of any sort. Love, Zoe.

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  7. Hi. I found this site over the weekend and boy oh boy can I relate. I was on meds for almost 20 years but have been off all meds (risperdal, seroquel, lamictal and klonopin, just to name a few) for almost a year now. It took me about a year to taper off of them but it was certainly worth it — I feel better than I’ve ever felt in my entire life. Am I doing as well as I’d like to be doing? No, and that’s how I found this site. I would like to find out more about nutrition (vitamins, minerals, which foods to eat and which to avoid and why, etc.), alternative medicine, and what’s worked for others. I’d also like to share what I’ve learned by trial and error.

    I’m new at this blogging stuff and don’t know much about it. How to do it, the correct etiquette involved, etc., so please forgive me if I’m doing it wrong. 🙂

    Good luck and thanks for sharing so freely and openly. You’re making a difference.

    (Is there a way I can e-mail you?)

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  8. Gianna, This is a horrible chapter of your life. You are in the middle of grief and it will take a time. Things will get better even if you don’t think so.

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  9. Grieving is the worst. And the best, because it has an end and a purpose. That may not make sense. It’s the worst because you can’t talk yourself out of it or pretend your way out of it, it’s so raw and so real that it laughs in the face of denial, but going through it and out the other side, well, you become a different person and you join the others who have grieved in the circle of those who know.

    Hugs if you like hugs, be gentle with yourself, eat some pie (if you like pie of course), take the time you need.

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  10. so sorry you are in such incredible pain and dark hopelessness. it’s horrible horrible horrible. you are not in a position, now, to know that it is a stage and that it will pass. from here, it seems rather clear to me that it is a stage and that it will pass. before you decide that life is a horrible waste of time give yourself a week. sometimes all it takes is a week.

    me, i don’t like the sound of the SF clinic, because i don’t like the sound of miracles, but you seem on top of it so do whatever feels good and right for you. but you are right, we do need, sometimes, someone in charge who tells us “do this” and “do that.” it’s such a primary human need, not to be responsible for every little decision, not to be feeling one’s way in the dark. if this doctors makes you feel safe (and you will have to trust your excellent gut here), go for it.

    it also makes somewhat sense to me that the w/d should be particularly painful now that so much shit is going down. it may not even be w/d but simply the fact that a lot of shit is going down. shit going down hurts, whether you are withdrawing from bad-ass drugs or not. it is human to want to locate the pain. that is why so many stressed people end up in the ER with chest pain. if they thought their hearts were in their ankles they’d be having ankle pain. the comparison is rough and doesn’t exactly represent your situation (you are withdrawing, and the drugs do operate on the mind) but maybe you’ll know what i mean.

    when i feel miserable my mind goes wild trying to figure out what’s wrong. then it goes away, all by itself.

    gianna, you are in free-floating, agonizing pain. you don’t need to make decisions with respect to what to do with your life right now. you need to lie on the couch, drink cups of tea, and let the tears roll down your cheeks. you need whatever it is that it comforting to you when you feel like shit. i know what works for me (sweets and good, loving women friends); you must know what works for you.

    having lived a life worth living… ha. the concepts of a life worth living changes depending on who you ask. steve fossett is/was all in favor of dare-devilishness. george bush thinks the life worth living consists of bombing as many bad guys out of existence as he can. mother teresa thought you should help others. me, i think that, if you have made a person happier at least once in your life, then your life has been worth living. a pretty low standard, as you can see. 🙂

    let me know if i can be of help.

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