It gets better: Sleep, insomnia and iatrogenic injury

The IT GETS BETTER collection is intended to help those who are currently dealing with the iatrogenic (medically caused) injury from psych meds…so that they might know that we can heal. It is also intended to help educate the masses to the realities that we face. Protracted psychiatric drug withdrawal syndrome is real. It’s also sometimes gravely disabling. The fact is it’s largely denied in the medical community. We are routinely blamed and told that the experience is psychiatric…this leads to more drugging and sometimes forced drugging with the very drugs that have harmed us. This must end.

But yes, to those who are still suffering, it gets better. Indeed, I do not consider myself ill anymore. I consider myself HEALING which is a vibrant state of movement and change. My limitations do not mean that I am sick. Learning to make boundaries for my well-being has been one of the healthiest things I’ve learned to do. Deeply respecting the needs of this body/temple is one of the most wonderful achievements of WELLNESS.

I want to call attention here to some posts I put together at a later date on learning to cope with and heal INSOMNIA. I’ve learned a lot and my sleep architecture continues to return to me. We do heal. We do get better. Much of what I write about in the below post are simply memories now.

#10 from the IT GETS BETTER series:

from AUGUST 3, 2011

insomMy life is very up and down. Things are always in flux and the severity of any given issue comes and goes…

My sleeplessness has been frightening and dangerous of late and that is how I came to write this post.  Alto Strata’s post mentions this and I started thinking a lot about it. I will add to what I wrote earlier by including another paragraph by Alto Strata’s article which I share more later from the original email I wrote.

Here she speaks of the ineffectiveness and the potential harm of any psychiatric drug use after withdrawal. I indeed do not tolerate virtually any psychoactive medication anymore, reacting paradoxically to most psychiatric drugs, at best I have awful adverse effects but it will allow me to sleep which on some occasions is just plain necessary whether I like it or not. (You can guess I do not like it and you would be right!)

Because the insomnia becomes dangerous I do sometimes use tiny, minute amounts of drug…most psychiatric drugs I cannot touch at all anymore and those I can tolerate somewhat must be used with great caution. In general I dose myself with amounts that are far below any “therapeutic” use in psychiatry. Micro-doses are often tiny fractions of what is considered a therapeutic dose.

I should add here, that many people can use the slew of natural methods I also use to relax and not need to take, in addition, minute amounts of drug. I’ve not been so lucky. My goal is to not need to ever take these tiny doses of drug again, but I’m not there yet. (update: I did get there and haven’t used any micro-doses of drug for at least a couple of years. Yes, it got better.)

Here from Alto’s forum are some suggestions to help naturally reset the body and sleep naturally.  I also use this Epsom salt bath almost daily. And as often as possible I practice yoga too. Most of what I do now is restorative in nature and often involves laying down for the whole session.

I strongly encourage anyone who withdraws from psych drugs to exhaust all natural methods of “gently lowering cortisol” first before resorting to tiny amounts of pharmaceutical substances.

From Alto who again in these two sentences articulates my experience too:

I have had many bizarre and debilitating symptoms. Withdrawal syndrome also made me hypersensitive to neurologically active medications and prone to paradoxical reactions, so I cannot be treated by conventional medicine.

She later says:

If you suffer from withdrawal syndrome, avoid psychiatric drugs. If you must try them, experiment with drastically reduced dosages only.

Oh yeah. I’ve learned that. Anything more and you might tailspin out in a paradox reaction.

NOTE — anyone who has withdrawn from benzodiazepines should NEVER use a benzo again. Paradox reaction can fling one into months of reinvigorated withdrawal syndrome. Also if one becomes addicted again subsequent withdrawals can become more and more difficult.

So, more of my experience is exactly as articulated below — the emphasized part being what I experience precisely. When I relax I go into overdrive. Not infrequently it feels like my body can’t survive. It’s not hard at all to imagine why sleep deprivation is used as a form of torture. It most definitely is torture.

The below paragraphs are from Alto Strata’s article from a few days ago. Protracted withdrawal from SSRIs and SNRIs antidepressants. In it she refers particularly to the cause of the below disorder specific to serotonergic antidepressants. (mostly SNRIs and SSRIs).

Sleep disorders are very, very common in withdrawal syndrome. Excessive alerting activity and inappropriately raised cortisol at night causes the awful withdrawal insomnia.

The brain wants to keep us alert to respond to (non-existent) threats, and wakes us up when we become too inattentive. Tragically, the alerting response is triggered by the relaxation of sleep. This is not a circadian rhythm disorder. It is entirely iatrogenic.

Too strong an intervention, even deep relaxation, will cause the meta-homeostasis to increase alerting activity. The paradoxical nature of the condition is particularly hard to understand.

I thought the above was a brilliant and precise articulation of what my experience often is. Because I’ve seen the above phenomena in ALL classes of psychiatric drugs and perhaps most frequently among those who withdraw from benzodiazepines I had to ask the below question of Alto Strata:

I have to wonder about your argument as to it’s cause. We see precisely this when people have never been on SSRIs at all…I find it puzzling that drugs with completely different mechanisms of action can have such similar withdrawal syndromes…what do you make of that?

she responded with this:

The underlying issue is autonomic destabilization, which can be caused by any psych drug. They all act on the CNS, no matter what their micro-action. The neurotransmitters involved are almost irrelevant except, I believe, when they’re GABA. I’m no benzo expert but I suspect benzo withdrawal causes a different kind of autonomic destabilization because the GABA system lacks the redundancy of the others and when GABA is knocked out, recovery paths are more limited. (My suspicion is that simultaneous withdrawal from benzos and other psych drugs might be the worst.)

Autonomic destabilization expresses itself in different ways, that’s why there are many symptom patterns. But sleep problems do seem to be common.

Autonomic destabilization can also occur in the wild, spontaneously appear, and spontaneously resolve.

The sleep terrors are out of control at the moment and I’m not doing well at all. Ironically, people often assume I must be doing better when I post more often on the blog. It is in fact just the opposite. The blog has been a coping mechanism for when I’ve been the sickest and unable to get out of bed or move much at all. It gives me a sense of purpose and accomplishment when I can do little else. In that way it’s been a great blessing.

My goal remains to be healthy enough to walk away from the blog (literally) when I’m bound to my bed I tend to do the only thing I’m able…balance the damn laptop on my knees and pump something out.

Well on another note, since this just happened now — I’ve been blacking out a lot lately. It’s extremely disturbing. Just now I wrote a couple of paragraphs for this post. I don’t write much original work anymore. I felt  good about it and wordpress failed to save it.

The really awful part is I have ZERO recollection of what I said…TOTAL black out…this is awful and happens more and more. Not limited to what I write, since I don’t write much at all…it’s a daily occurrence. I find evidence of something having been done in the house. I used to ask my husband if he’d done it…now I generally know it was me and I’ve forgotten doing whatever it was. I forget conversations I have with people and emails I send. The list goes on and on.

Sometimes I wonder how I’ll come out of this? Will some of this brain damage be permanent? I cannot trust my mind or brain anymore and that is very sad and scary. Can’t help but think of Grace Jackson MD’s book Drug-Induced Dementia: a perfect crime.

Okay…that’s the sad and scary stuff.  Still the fact remains that the trajectory I’m on is towards wellness. My body gets stronger all the time. And the degree and level of acuteness of the most horrible symptoms is diminishing. Yes, they are still acute and intense, but less so. It’s hard to feel happy about that when one is still in the throes of feeling terribly ill, but one need not feel happy to continue seeing improvement. In fact one need not feel happy and one can still be positive! One need not be happy, but one can still find joy in the nature of being. In life.  Wow, what a concept, but I’ve discovered it’s all true.

That three weeks where there was great improvement due to dietary changes I wrote about here? Well, some of the improvements have remained. Nothing is as acute as before, but the higher functionality did leave me and that is the nature of the recovery for some of us. Roller coaster. I had three weeks where most days I could go out. I still was crushingly exhausted and after about 3 pm I was worth nothing at all, but it was a nice change of pace.

The improvement that remains is that as before I only got out of the house maybe once a month (after a couple of years of being totally housebound)  it’s likely that now I get out once a week. AND!!! I can talk again if I want to. I may not always want to and it may be very exhausting at times but I can CHOOSE to do it. I truly could not speak much of the time prior to that. On occasions yes, but certainly not at will. This allows me to touch bases with friends in a way I couldn’t for far too long.

I do yoga, walk, lift small dumbells and love to garden when I’m able. And when I’m able I do all of it as much as I can. I love to do chores too. I love to do the dishes, laundry, clean the kitchen etc. when I’m well enough to do it. It’s such a joy that most people take for granted, I’m afraid. I couldn’t do any of it for so long.

✶✶✶

And again:

I want to call attention here to some posts I put together at a later date on learning to cope with and heal INSOMNIA. I’ve learned a lot and my sleep architecture continues to return to me. We do heal. We do get better. Much of what I wrote about in the above post are simply memories now.

The below are posts that show how far my healing has come.

See also: The anniversary posts: the 5 years off psychiatric drugs documented

For an article with the history of my tale of wild untested psychopharma gone bad visit Dr. David Healy’s website: Monica’s story: the aftermath of polypsychopharmacology 

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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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters