Slow down Bessie

Yesterday I crossed the threshold in my withdrawal from Risperdal where I went from simply dealing with the inevitable suffering that withdrawal brings into total agony complete with heart palpitations and head, neck, back and shoulder pain. Unbearable. I did what I had to. I took 1/2 mg of Risperdal. The part that sucks is that I felt like I had failed. And that’s bullshit. I’ve gotten off (once again) 50 mg of Seroquel, 200 mg Zoloft, 200 mg of Lamictal and now 10 1/2 mg of Risperdal—where is the failure in that. It seems like victory to me if I think with a clear head. I will resume the withdrawal of the Risperdal once I stabilize on the 1/2 mg.

I went too fast and really I knew I was going too fast. But I went against my better judgment because I want this to all be over and listened to a number of people (willingly) some of whom have come off drugs and others who want it to be over for me too as well as my husband and took a leap of faith which proves faith is not always enough. I’ve been plodding along here cautiously and carefully following the 10% rule. No more than 10% of CURRENT dose. Yes it’s taking years, but I haven’t’ reached the hell I reached yesterday. And so maybe reinstating means prolonging a low grade hell, but that is the way it’s going to be.

I “talked” with Jayme from Rayne’s World yesterday. A huge proponent of getting off of drugs and ditching psychiatry. She has done so herself. She had wise words for me when I said that I didn’t feel credible keeping up a blog anymore, imagining all the people that must think I’m kidding myself in thinking I can get off drugs. (even though I have a lot of readers who have come off of drugs and are living successful and happier and healthier lives than ever before and it is those people who keep me going everyday.) Here is what Jayme said:

I hope you continue your blog. My friend R____ recently went off all her meds, slowly of course, and in the end she went into crisis because her body lost the ability to fall asleep without Seroquel. So she went back on the lowest dosage as possible of Seroquel just to maintain her sanity. Her goal is to be off all drugs, but that will come later. Sleep is more important to her. The thing is, she feels like a failure and is ashamed to tell anyone she went back on Seroquel. But it’s important to tell the whole story so others can know what to expect. Otherwise they will believe that they have failed if they go into crisis. And many are scared off because of fear of a crisis. But it’s all part of the process, and you always have control over how slow you take it and whether or not you go back on drugs when a crisis hits. (emphasis mine)

 

This is an individual journey and while we can take comfort in others experience we have to ultimately listen to our own bodies. Someone a couple of days ago left a comment that left me defensive. He said:

 

Be open to remaining on meds…I have tried several times to come off neuroleptics and I get to about ten-fifteen days and it is very intense. It is always a question – is this withdrawal or…symptoms of illness? Only you will know the answer but don’t struggle on too much. Being on meds doesn’t mean anything unless you make it so – anything that can help – use it and try not to judge it in a negative way. Focus on right now this very moment and accept the discomfort…don’t resist or try and get away from it…everything changes eventually. Focus on the space in between things and question what goes through your mind. Is this real or is the story adding to the discomfort? Don’t think that if you don’t get off meds now you never will…there is a right time for everything. listen to YOUR knowing and you’ll be ok. For sure.

 

And while I’m not open to remaining on meds or much of the first part of his comment (which is what made me defensive) he ends his message with wisdom. Everything else he says is wise and grounded. (sorry Michael for being a bit snitty in my response to you.)

 

I don’t want to choose drugs as a final option. I do believe that ultimately my mental health issues are psychological and spiritual issues that can be worked on. That cannot be said for withdrawal symptoms though. Those are physical symptoms caused by the body being accustomed to poison in the body. It would have been stupid not to take the 1/2 mg of Risperdal and suffer needlessly.

 

Nonetheless, I worry. I fear. What if it’s just been too god damned long? I haven’t gone to sleep at night without some aid in more than 15 years. Is my brain permanently damaged? The only answer can be “I don’t know” and no one else does either. Breggin expresses doubts about people like me getting off drugs. Grace Jackson another “dissident” psychiatrist (as she is sometimes called) who I’ve corresponded with only wished me her best her tone suggested doubt. She by no means thought it was a done deal that I would succeed.

 

Sleeplessness is hell. I can’t handle it. Some of the people in the benzo groups I’m part of go weeks and months without sleeping. I can’t do that. My physiology is too delicate—it just feels like I’m going to die. The physical symptoms of pain add to this feeling. Sleeplessness is not a choice I can make. It’s not an option period.

Last year around this time I did something similar. I cut down on the Risperdal too quickly and had to reinstate a bit. I stabilized then I switched to Lamictal and got off 200 mg of that. Now I’m ahead of where I was last year on the Risperdal, but I’ve gotten stuck again. I won’t do anymore experimenting with going off more quickly than the most conservative estimates. And I certainly hope I stabilize at this low dose of Risperdal.

You know the shitty thing about this? Since I’ve been completely off Risperdal I had no irritability. Today on 1/2 mg I am again an irritable bitch. Risperdal makes me irritable and you know what pisses me off? The damn doctor kept upping my Risperdal dose because of irritability. God I want to sue that motherf#$@er. I can’t help but feel so angry when I think how I followed along innocently looking for help while being made worse. It’s so infuriating and I have no where to unleash my anger. Perhaps when I’m not feeling so irritable from the Risperdal my anger will become manageable too. It does seem this anger is being fueled by the irritability that is being caused by the Risperdal.

In any case this nasty irritability I feel is great incentive to stabilize and get off of it. In some ways I like myself better when I’m desperately sick from withdrawals than when I’m nasty to the people I love due to iatrogenic irritability.

I’m so tired. I was hoping to speed this up. Make it another 6 or 8 months and now I know it may be another year or two instead. I’m so tired.

 

19 thoughts on “Slow down Bessie

  1. Karen,
    I was on 11 mg of Risperdal and am now on .45 mg…yes, I’m almost off…I was on Risperdal for about 13 years….so it can be done….

    It’s taken a long time…I’ve been withdrawing from it and other drugs for 4 years.

    You would need to do a lot of research on how to support your body and mind with other means…this blog is good place to start…

    You need to be ready to make lifestyle changes, be disciplined and committed.

    Look at the “about” page…then take your info to a doc that will help you—you shouldn’t try to do it alone.

    It can be done! I know lots of people who have freed themselves from neuroleptics…

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  2. Hi, I am Karen. I have just been reading about Risperdone which is basically the generic form of Risperdal. I have taken this drug for more than ten years. I feel very upset when they say things like, after a person has taken it for so long, their mind can’t work without it and ,the chemical makeup of their brains is dependent on the drug now forever. I have been taking 2mg for many years. At least it wasn’t four mg or something like that. I was told by my doctor that I may not always have the psychotic symptoms related to my bipolar illness,voices ,hallucinations. I wouldn’t mind hearing other peoples comments on how thy have succesfully tapered of their Risperdal after taking it for so long ,or any other related comments.I was once was given an iq test and scored high on it, it’s just my memory that isn’t so great right now.Thankyou, I wish all of you the best, Karen

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  3. I am a dual-disordered person. I don’t know if this will help you but it has helped me tremendously. After years of beating myself up because of my mental issues, I finally made the decision to truly accept myself, mental illness, faults, terrific qualities and all. I know this sounds really simple, and may not be appropriate in your case or other cases (please forgive me if I am being offensive in any way, I’ve only just recently found your blog and have not checked out your archives.)
    Having a mental illness is certainly no easy task to bear throughout our lives, but it does give us the opportunity to be more loving and compassionate to others who suffer as we do or anyone who suffers from a debilitating illness of any sort.

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  4. Sally,
    I find melatonin very helpful for jet lag. I try not to take it often because it is a hormone and I have hormonal problems but for a couple of days after traveling it does seem to set the body straight.

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  5. I’m glad you slept like a baby too. I’m still reeling from the information that Ambien and Lunesta are closely related to benzo’s. I took Ambien when I traveled to Europe before my false diagnosis with bpd nos. It had been recommended for jet lag and such and it worked but I could see how I could have become dependent on it and all of the hype about how it wasn’t addictive, just lies, well of course.

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  6. oh…there is plenty of irritability to go around. Once I’m premenstrual again, I’m sure that hormones will be part of the cause too. In any case, I imagine I can be off Risperdal by the end of the year? maybe? I hope so. I suppose I shouldn’t make a timetable and just let my body tell me when it’s time.

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  7. I hate that you are having to deal with the irritability. It’s the old “damned if you do, damned if you don’t” routine. You can’t go off Risperdal or you feel like shit and you can’t stay on it or you’ll feel like shit. I’m encouraged to hear that it’s the Risperdal that is causing the irritablity. There’s a (distorted) grain of hope in that.

    I wanna sue your doctor too.

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  8. Thanks Sally,
    Ambien is out of the question. Ambien and Lunesta and the like are closely related to benzos and very dangerous. They are psych meds. Also I’m hoping I haven’t forgotten how to fall asleep—I’ve been in withdrawals which cause sleeplessness. If I move slowly enough—then sleep really shouldn’t be an issue. It hasn’t been throughout most of my withdrawal. I’ve been doing this for 3 years. I’ve been sleeping most of the time. I only have intermittent days of sleeplessness which is totally okay.

    And last night!! I slept like a baby.

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  9. Gianna, what you are doing is wonderful. The honesty you display is courageous. Many people choose to take some sort of drug. This is not a character or moral failing, or a sign of a biologically defective brain, just a fact of life. I support your choice to get off of psych drugs. I can’t imagine ever taking them again, and yet, sometimes it’s okay to do so. As for the sleep thing, many people have trouble sleeping. Have you thought about temporarily trying a non psych insomnia med? Several years ago I used Ambien temporarily and it worked – of course with all of the stuff that’s come out about Ambien in the ensuing years, I don’t know that I’d take it again.

    One good thing about the first ssri I ever took years ago was that it showed me what life without crippling anxiety was so that off of the drugs I could shoot for being that way. Ambien sort of helped me see what going to sleep “normally” was like so I could do it without drugs.

    I also like Andrew Weil’s Sound Body, Sound Mind cd for falling asleep listening and have used audio books of novels, etc to listen to in bed to fall asleep.

    You are unique. Psychology teaches us that if we aren’t all identical, some of us are inferior. Psychology is wrong.

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  10. “I’m an irritable bitch” that is normal. We all go through ups and downs of bitchyness. You have reason to be bitchy as you are unhappy. Just because it isn’t “good” emotion doesn’t mean it isn’t you. I know you mean MORE bitchy than normal, I’m just saying.

    Anyways I just read lack of sleep makes you lose control of your emotions. AKA Manic.
    Emotions Run Amok in Sleep-Deprived Brains
    http://news.yahoo.com/s/livescience/20071022/sc_livescience/emotionsrunamokinsleepdeprivedbrains;_ylt=AiwQRevAt9gLwZjF_Nn2qs4DW7oF

    then another article where U.S.A. sleep “norms” is questioned.
    “No Such Thing as a Good Night’s Sleep”
    http://www.livescience.com/health/070928_hn_sleep.html

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  11. Gianna-

    I’ve never known anyone who has taken as long as I did. Part of the reason was because I was trying to stay afloat as a student and had to go super slow. I also had Effexor to contend with, which was horrific. Keep the faith…

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  12. irritability, the bane of my life. being off 2/3 of the klonopin has as good as taken out constant irritability from my life. what a fucking relief. i haven’t been irritable in that way for almost a year. i thank god every day. it really, really sucks. i know what you’re going through.

    you should give yourself a couple of days before you decide that the 1/2 mil of risperdal is the cause of the irritability. there are other things that’ll do that, including (randomly) a) not sleeping, b) menstrual cycle, wherever it’s at, c) disappointment in yourself, d) resuming sleeping, e) your brain not knowing which side is up! f) things having been REALLY intense lately, g) sudden relief with attached guilt, etc. etc.

    were you irritable when you were still coming off the risperdal and were taking just 1-1/2 mil?

    think, gianna, think. and then, when you’re done thinking, cut yourself a generous slice of slack and make sure to put some hot fudge and a big fat wallop of whipped cream on it. you fucking well deserve it.

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  13. ama,
    thanks for your beautiful and insightful comment—and you say you haven’t even clarified what you really want to say!! wow.

    Mark,
    that’s just it. I’m not myself. I’m an irritable bitch. When I was completely off the Risperdal I was free from my irritability. I may have had withdrawal pains, but I felt like a nice human being. Now I’m disgruntled and unpleasant.

    otherwise I think your philosophy is right on.

    I want to be fully myself and while I’m still on 3 mg of Klonopin and 1/2 mg of Risperdal I can’t be sure of who I am—so the trek continues on. Thanks for being here for me.

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  14. My only motive for coming off psychiatric meds was to be myself. The dosage you take is so small (1/2 mg of Risperdal ?), I don’t think it really stops you from being yourself. If drugs/meds are “helping” by the takee, then it’s hard to call it harm. the 1/2 mg is just a technicality that you will beat eventually. There are 12 step groups A.A. and N.A. that take abstinence seriously, you do not need to be so serious in my opinion.

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  15. nice post, gianna: intelligent, wise, beautifully written, full of heart. i have thoughts about this that i’m trying to clarify to myself. i’ll post them here when they are clear at least to me! in the meantime, for all it’s worth, i think you did the right thing. do you know why? because there is no wrong thing to do at this time except doing something that damages you. too much pain is damage.

    time? what’s time? who’s to say what lies at the other side of being drugged? all we have is now. we may be dead tonight. let’s make the now as BEAUTIFUL as we can. once the path to wellness become a path to misery, only fools would stick with it. there are many alleys and little detours in the road to wellness, but remember, tutte le strade portano a roma.

    see you at the trevi fountain any day now?

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  16. Mike,
    Your comment is incredibly comforting and frustrating at the same time! 5 years! Oh god. I just want to be done with it so I can enter the recovery period AFTER the withdrawals. But then I guess I will be wanting that to end desperately too so that I can begin my life.

    I need to accept what life is now, then and into the future whatever it is.

    Thanks for the rest of your advice too. Oddly enough I really haven’t been unstable—had some depression but that’s it. Even when I went off half of my mood-stabilizer. No mania in sight, but I will keep what you say in mind. I just think the diet and nutrition is keeping me fundamentally stable, but there is no way to know that for a fact.

    Thanks undiagnosed for the validation. You are always so helpful.

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  17. Nope, not failure. You are doing so much to take care of yourself and one of the reasons you have gotten so far is that you know when enough is enough, and don’t push farther than you can handle in a given moment. Hopefully you can now enjoy some sleep.

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  18. Good move with reinstituting a smidgen of the R. As you know it took me 5 years to taper off of my cocktail. There was a point in the middle when I DC’d two meds in as many months. I went faster because it was during a school break and I so desperately wanted to speed things up but man did I pay for it. It was brutal…

    You really have a come a long way. It’s quite possible that physiological healing starts with each taper (e.g., receptor up or downregulation) and not when you are completely med free. So in that sense you are progressing. You have also experienced a return of aspects of your humanity, which is also heartening. Just trying to make the point that, as frustrating as it is for it to take this long, you are moving forward.

    Another loose thought… Maybe it will help to think of slowing your taper as insurance against any iatrogenic mood de-stabilization that may occur down the road as a result of withdrawal. I am about as unipolar as they come and I’ve experienced several sporadic short lived episodes of hypomania (talking loud/fast, intense irritability, increased mental clarity, hypersexuality, etc). I can’t tell you how at odds this is with who I am… In sum, you are progressing, you are getting more of *you* back, and slow and steady is the only way for many of us. Long live all of courageous turtles…

    Keep fighting, G.

    Mike

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