Believe and Know . . . (as it pertains to psych drug withdrawal syndrome or serious illness)

Monica Cassani
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If I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning. — Mahatma Gandhi

That is certainly how recovering from the heinousness of the iatrogenic injury of psychiatric drug withdrawal syndrome has worked for me!! — my unrelenting determination to find a way through the maze of autonomic nervous system chaos has, indeed, brought me many gifts and continued healing . . . and it’s not done yet!

Certainly I’ve not believed that in every moment and in fact have at times experienced great despair when the illness had me bedbound and unable to speak, unable to even brush my teeth and experiencing acute pains and insanely strong and difficult sensations that don’t seem to properly belong in the experience of being human. And yet, something — some small thread of knowing — kept me going, always.

If you find yourself in such a hellish place know that there are many like us . . . making our way through. Healing and growing and learning. Keep on going. All things change. All things pass. All is transient.

In general I say I do not believe anything and really that remains true. Still because of the poverty of language the word belief works here and I don’t know how to not use it and make myself clear. So please find it in your being to understand how one might not believe and believe at the same time 🙂

I’ve found that holding contradictory “truths” is often the way forward actually.

Peace and love to all my fellow comrades who’ve found themselves in protracted psychiatric drug withdrawal syndrome.

Learning to move through protracted withdrawal has been a long process. Now it’s one I largely can appreciate in ways I certainly could not when I was suffering at its height. For documentation on some of how I did that see: Information and inspiration for the chronically ill

Please do not attempt to discontinue psych drugs without first very carefully educating yourself on the risks involved so that you might minimize the chances of developing grave iatrogenic illness if you decide to withdraw: Psychiatric Drug Withdrawal and Protracted Withdrawal Syndrome Round-Up

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This post was first published on
Beyond Meds

18 COMMENTS

  1. Dear Monica
    I admire your enthusiasm and your responsible advice.
    I reckon there’s no such thing as ‘long term mental illness’ (as it is known) – just psychiatric drug withdrawal syndrome. A person can be fooled though, into thinking that they are genuinely sick because the treatment eventually makes them sick.
    But its still possible to get completely well.

    • RE: A person can be fooled though, into thinking that they are genuinely sick because the treatment eventually makes them sick.

      I often look back and ask how I did not see how sick “treatment” was making me ? It’s like the stuff gave me amnesia or some memory disorder where I totally forgot what I was like before.

      • Peter Breggin’s calls it medication spellbinding, but you must know that already, copycat.

        http://breggin.com/index.php?option=com_content&task=view&id=187

        I will say in my case, it was very confusing to me to have the four doctors I went to, and then my husband’s doctors, all jointly lying to my husband and myself about the misdiagnosis of my drug induced illness, and the serious adverse effects of the subsequent drugs. One just doesn’t expect a whole bunch of doctors to lie to you. What did Healy call it? … “healthcare kill.” Based upon my experience, defaming people with “mental illnesses” is how the medical community labels all they want defamed and discredited, for reasons of greed.

        Monica, thank you for all the work you do on your blog, I’ve found some wonderful information on it. I’m glad you’re doing better.

        • Yes I did think of using the term spellbinding but not everyone knows the definition of that. http://breggin.com/spellbinding_psychiatric_drugs.pdf

          This spellbinding needs to be more widely known and explained cause it’s effect causes the most damage.

          Once I figured out I was really having a withdrawal problems I was starting to see the truth, the spell was starting to be broken.

          The paper that link above leads to does point out “memory dysfunction”.

          The part I hate the most about “dual diagnosis” is that people with alcohol / addiction problems never get free of chemical intoxication cause psychiatric drugs start usually the day detox medication stops.

          Active drinking or addiction or both > detox > psych meds

          “Dual diagnosis” ensures drugs spellbinding effect goes unbroken.

      • Yeah, what Someone Else says. The drugs can induce a state— “agnosia”— which is what petty shrinks call not believing that you’re sick the way they say you are and need to take the medicines they prescribe you so you can respond to them the way they think you should. It’s just part of the brain damage, I think, of some of the drugs, many of which can subsume your personality, skills, mind, and strengths so much that you figure most of what you have always known as YOU is gone.

        But it comes back, and often comes back the wiser.

        In the eighties I read about head injuries specialists that were adept at interviewing people who had symptoms of brain injuries, but denied ever having had one. Eventually, it would click during the interview and someone would say, “Oh, yeah! There was that time I fell out of that second story window!” Before they remembered, they suffered from injury induced “agnosia” and it wasn’t a state of psychological denial, it was just a little byproduct of the injury.

        • “The medication made me better…after 10years and trying 20 different meds and side effects and so on and I also needed to wait like a month before it helped.” yeah… what are the numbers on “spontaneous remission” again?

  4. Pharmacists should have much more of a role in our medical care. Check out at this link:

    https://www.ascp.com/articles/prescribing-cascade

    It starts with, “Any new symptom in an older adult should be considered a drug side effect until proven otherwise. Unfortunately, medicines are often overlooked by clinicians as a likely cause of new symptoms in older adults. A common mistake is to treat the symptom by adding a new drug. Sometimes, this new drug also causes another side effect, which can then trigger adding yet another new drug. This sequence of events is known as the ‘prescribing cascade’.”

    I think that should be extended to all persons.

    Since hormone replacements have eliminated about 95% of my MS pain, I’m making a plan to discontinue most of my meds. After carefully tapering back to less than a quarter of the baclofen I’ve been taking— an antispasmodic that can cause hallucinations and psychosis if stopped abruptly— the spasms and burning sensations in my feet (the other 5%) have been reduced significantly. I’m sleeping through the night lately, instead of having to sleep in two or three shifts, like I have been for the last two years. I still have some tapering to do, but when I feel short of breath, I take a tiny chip of baclofen, and the symptoms stop within ten to fifteen minutes. It’s only active for two to four hours, so it’s easy to tell when it is and isn’t active. It’s amazing how different the world looks when your head is working better, you’re better rested, and you have more energy.

    So, I’ve also cut down on the amount of ibuprofen I need to feel o.k. My kidneys, heart, and liver will thank me later, and I’m cutting the oxycontin in half now. I know what to do should withdrawal symptoms get harsh or too disruptive— in the world of illicit drugs it’s call “chipping” but it works with with prescription drugs as well . Am looking forward to being free of medications that aren’t working and/or make me sicker than I am.

    My major concern right now is the amitriptyline, because it’s no longer making me sleepy and because it raises the risk of heart attack by 35%. The drug itself actually collects in heart tissue. I’ve been taking a very high dose— 150 mg— daily for nearly two years. And because it’s a mind bender and abrupt continuation can cause a psychosis that most psychiatrists and a lot of doctors would assume is a mental disease. Because the drugs only have the effects they’re promoted for, right? Just found out, also, that amitriptyline only works for nerve pain in 3 out 4 people. For all the trouble it causes, it may not even be working for what pain I have left.

    Amitriptyline is also making me flat, too indifferent, and making it difficult for me to learn from negative experiences– I think. I’m learning the differences between fatigue, tiredness, and lethargy; and between brain fog that is part of MS vs. cognitive impairments caused by the meds.

    I’m going to use the 10% taper for amitriptyline starting July 1st, and will give myself a month to watch for withdrawal symptoms— ; ) THANKS MONICA!!!. I also see my neurologist on that day, so — I’m going to ask him to prescribe liquid amitriptyline and good instructions for dilution (I’ll also ask a pharmacist to compare notes) so I can really taper by 10% with a little rounding up and down.

    I ended up on most of these drugs willy-nilly because of the awful symphony of pains throughout my entire body that made it extraordinarily difficult to go to sleep, and which hurt really very bad. I wanted to cry sometimes, the pain was so intense. During a freak cold-spell early last December, I discovered that hot flashes and night sweats were responsible for almost all the pain north of my ankles, even when I didn’t feel particularly hot or warm. I was wearing a t-shirt and light workout pants that stopped below the knees and a sheet caused pain all over when it was 52 degrees Fahrenheit in my room!

    It’s hard to express what a joyous and relieving bit of information that has been. It changed everything. I’m considering raising the hormones a little bit, to stop the struggle between being too cold and too achy some nights, but sometimes that’s a toss-up now, and it’s not severe. I’m pretty sure that most of the symptoms I’m experiencing are a result of the drugs, not MS. If I stumble on some evidence contrary to that for some drugs, I’ll work with that, but I’m not going easy on any of them and will assume the drug is the culprit until evidence says otherwise.

    Since extended sleep deprivation is not an option I can live with— that, severe pain, and hypervigilance was responsible for my one psychotic episode at the age of 51. I’m going to take trazodone and/or benadryl to help me get to sleep until I’m clean, and I have some time to establish good sleep habits again; then I’m going to start cutting down on the trazodone and then I will be FREE of psyche drugs! Hopefully. It’s going to take however long it’s going to take— another goof example of slow being fast— but right now I’m capable of making a complex plan, doing the math, and writing a coherent report with a table to give to my neurologist– while I’m in relapse! Already I’m smarter by reducing my drug intake. My neurologist’s boss has expressed serious concern about the number of meds I’ve been on, so I expect my plan to be received well, to be supported, and for any questions I have to be answered— and probably to be given helpful advice. My GP found the connection between the pain and menopause to be wonderful. That’s the mark of good doctors— they listen and consider that their patients may have insight that they don’t.

    I feel so happy right now— I have a lot to look forward to. THANKS FOR LIGHTING THE WAY, GUYS!!! I feel much safer with you and feel more confident in my ability to cope with the challenges of discontinuing medication because you do!

    • good to hear some of your symptoms are improving.

      I’ve seen that it’s often the case that psych drugs exacerbate illnesses like MS and Lupus and other auto-immune and many other chronic illnesses in general. That’s pretty terrible given they’re routinely given to folks in such situations.

      I’m glad you’re finding a way to minimize their use.

      • If nothing else, the body has to expend time, energy, and resources to cope with the meds and their reactions with each other and with my mind-brain when all that work could be dedicated to healing lesions.

        After much study, I found that alpha lipoic acid which is supposed to be good for nerve pain (and is used for Type II diabetes) also lowers blood sugar. Baclofen raises it. There’s an unnecessary struggle to invite into a body. Several other combinations were cautioned against and one was specific to autoimmune disorders, I think amitriptyline. Fibermyalgia and ADs?

        There’s a little problem at the V.A. as far as policy goes. The neurologists thought my GP was supposed to handle the pain meds, and my GP thought it was the neurologist’s job. Doesn’t matter anymore, and I’ll kick myself if I ever let myself be prescribed so many things again.

        Rather than using the illicit word “chipping”, I’ve named it “nibbles”– take a little mousy morsel (after the dose is tapered to such a small amount) and monitor. After a little nibble of baclofen two hours ago when I started to feel shortness of breath, the pain in my ankles INCREASED about 20 minutes later. Within an hour it decreased again noticeably, but the spasm is still worse than it was last night and most of today. My ankles have felt more relaxed (very little spasm) than since before the symptoms of MS started— which goes back to summer of ’07!

        Baclofen makes my ankles and feet hurt! Quitting it does wonders. I’m too happy to feel like a chump who has been burned twice with the same baby-tricks, and am bearing in mind that tapering off others may not be so easy or could even be very hard. Hope that’s not the case with amitriptyline or trazodone. Since I’ve seen what you and others have gone through with it, I’ve decided to take your advice.

        “… holding contradictory “truths” is often the way forward…”

        Totally.

  5. “I’ve found that holding contradictory “truths” is often the way forward actually.”
    Well, psychiatry would call that cognitive dissonance ;). I love when they label everything that I like about myslef as a sign of this or other disorder. I’m almost proud to be mad 😉