What I looked like during psych drug withdrawal

Someone on a withdrawal board asked me what I looked like when I was sick from withdrawal. This was my response which I’ve edited and filled out a bit for this post:

I was obese most of the time I withdrew…I looked like a different person than I do now for a lot of other reasons as well. I couldn’t sit upright for about two years because my blood pressure was so low, so not only was I bedridden, I couldn’t even sit up. I didn’t have the strength to hold my hand up to my mouth long enough to brush my teeth. I’m lucky my teeth didn’t rot away. My gums are a bit of a mess but I now take meticulous care of my teeth. I couldn’t speak most of the time either during that time…the issue with speaking actually lasted much longer than the critically bedridden time. The issues with verbalization led to further isolation. People couldn’t visit if I couldn’t even talk. The phone wasn’t an option except on rare occasions. My muscles got totally atrophied. I had enough strength to get to the bathroom but not enough to do anything else out of bed. On a couple of occasions I ended up on the floor of the bathroom before finding the strength to find my way back to bed. Bedridden means I didn’t leave the house for two years as well. I was f***ing sick and I looked f***ing sick. No washing, no haircuts (I hacked my hair off at one point so that it would just be out-of-the-way)…I was completely nonfunctional…I needed 24 hour care. My husband provided that care…it was total hell for him too…isolation too…because no one understood or cared enough about what was going on in our house even though we tried to let it be known…there are no supports in the community for what happened to me… I would have died without my husband’s care…this I have no doubt about.  

What else was it like? Here is a symptom list: Post psychiatric drug withdrawal. One woman’s report of symptoms

I’ll post before and after pics too (scroll down). You’ll understand if I didn’t take pics while I was sick. I really don’t know what I looked like during that time. Honestly, I didn’t have the energy to consider such things. I can still often feel shitty these days, but at this point when I feel like crap I fall strictly in the invisible illness category. There was nothing invisible about how I was sick when it was really bad. I didn’t really relate to that term at all at that time. Bedridden, atrophied and unwashed isn’t invisible except that no one sees you in your home of course. And almost no one did. Only my husband and one woman who became a dear friend. But the illness is glaringly obvious for anyone who spends time with folks in the throws of severe protracted psychiatric drug withdrawal.

And to be clear — not everyone gets sick like this when they come off psych drugs. It’s some far too large minority percentage that do. Clearly far too many of us. I know thousands of us. Of course there is a great spectrum of outcomes from barely affected at all to gravely affected. The boards online are heavily weighted with the worst of us because we have nowhere else to go. Those who don’t need the boards for support aren’t there.

Some back story here:

The above two pieces can serve as a mini history of my personal journey in and away from the psychiatric system.

See also:

and

Photos:

Before
Before
after
after

*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If you MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

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The unbearable heaviness of protracted psychiatric drug withdrawal

(gratuitous kitty pic) These darling sweet things help me heal.
(gratuitous kitty pic) These darling sweet things help me heal.

This post is now on Mad in America as well

Last week Matt Samet posted about a setback he’s recently had. The withdrawal ugliness which had largely abated came crashing back after several years of wellness. I made some comments about that in a post that linked to his.

What I didn’t say is that I’ve had my own setback recently too. Setbacks for me remain routine and normal…they are part of the excruciatingly non-linear process of recovery. I’ve not yet experienced anything resembling full functionality, but I do have periods of time where I start to imagine what that might be like again as I’m able to do a bit more than usual. So, these setbacks, while becoming less intense in many ways are always hugely discouraging still.

This setback was triggered by a commonly used topical (over the counter) medicine, so yes, another drug reaction. It’s hard not to beat myself up for even thinking I might tolerate it. And I really didn’t expect this to happen, but our skins absorb stuff as efficiently as when we ingest through our mouths and I know this. Anyway, I learn more and more about how to take care of myself.

One of the things I’ve always liked about reading Matt Samet’s work is his gift for description in his prose. Describing to the uninitiated the utter hell realms of protracted psychiatric drug withdrawal is very difficult. I find myself at a loss even when coming up with some rather creative metaphors which I’ve done many times. When I read Matt’s expressions I always think, “oh, good, he makes it at least vaguely conceivable to those who’ve never gone through it.” One of the worst things about these acute and disabling symptoms is the utter sense of alienation they create in those of us experiencing them.

Here are a couple of tastes of his prose describing such.

First from his first  post on Mad in America, The Other Side:

At my darkest hours, I certainly lacked all faith. Sleeping two hours a night, vibrating constantly like a half-busted refrigerator, barely able to converse or make eye contact, sweating, sheathed in muscular rigidity, panicking, too weak and fatigued to exercise, too distracted to read even a simple magazine article, I remember thinking the pain would never end.

and more recently as he writes about the setback he’s experiencing:

I’ve come to believe that the big issue with med withdrawal is that it causes a light-years-beyond-“discomfort”, horror-movie overexcitation that won’t, not for one instant, let you forget your existence. Your second-to-second reality comprises a seemingly unending hell with no pause button, only the occasional relief of sleep. You are in so much pain on every possible level that you simply cannot escape yourself, and so the pain looms larger like for it.

In the withdrawal/healing state, the symptoms are often so strong, and the fear, racing, obsessive, and tortured thoughts, and inner torment so great, that you are unable to enter that frictionless state — aka plain old life — in which you are simply acting, moving freely about the world as need and desire dictate without the ball-and-chain of dread-infused self-awareness dragging you into the abyss.

Without being so persistently aware of your existence that you also can’t stop from ruminating about its antithesis, death.

Distraction helps a little, but only for so long. I often felt like my very shadow was chasing me, leaving nowhere to run. As soon as I paused, even for a microsecond, the withdrawal storm was back on me like pack of snarling dogs. Worse yet, insomnia and fatigue had sapped my energy stores, yet if I tried to “rest” because I simply could not take another step, the symptoms crowded in to fill the stillness. I felt like a shark that must always keep swimming, or it will drown. The experience was in every sense an existential trap.

You look at other people not tormented as you are and wonder how they live so casually, so fluently. What secret do they know that I don’t? Their world seems alien, a realm of the gods and superheroes, a paradise unobtainable. Just to go grocery shopping or throw a Frisbee in the park or smile at a child would take more energy and courage than you could ever imagine conjuring. Occasionally, you hit one of those rare windows of calm, and you can, in the contrast, see how withdrawal has warped your picture of the world. Then, discouragingly, the symptoms return to push you back into a terrified and frenzied thought-storm.

Oh shit, not this again. (read more)

Yes, oh shit.

Anyway…this is in large part why my social media hiatus hasn’t been as complete as it would have been otherwise. I had been successfully moving back into the world a bit. I’m still more functional than I’ve been at other setback points, but I need the distraction the internet affords at times like these when the various pains and sensations are once again screaming within me. I’m not nearly as involved in all the things I’ve done online for the last several years but I’m around more than I was the first week or so when I was feeling a lot better. My notifications remain turned OFF and I’ve not re-subscribed to the multiple news and information outlets and I’m not responding to most comments etc, but I’m around more than I said I would be.

I know that my trajectory continues in a positive direction so I’m largely okay, but yeah, it sucks too.

Below I’ve put a list of some of the posts I’ve written from the trenches. When the symptoms were at their most acute and chronic too. That is really why protracted withdrawal issues are so horrible. The symptoms are both acute and chronic. An unremitting hell.

I can say that it’s all mellowed hugely over the years I’ve been ill. It may be taking a long time but the direction is undeniably one that moves towards healing. I remain optimistic. Truly and deeply optimistic.

Some posts that tell of symptoms:

More similar posts can be found here: Monica/Gianna, healing documented

And then from Dr. David Healy’s site: Monica’s story: the aftermath of polypsychopharmacology 

For information on how to more safely withdraw and lower the chances of such illness see: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

This post is now on Mad in America as well

For more of Matt Samet’s lovely prose read his book:

On Amazon: Death Grip: A Climber’s Escape from Benzo Madness

And for Kindle: Death Grip: A Climber’s Escape from Benzo Madness

Hotel for the mentalists

Part 1 and 2 here and part 3 here. Part 4 here.

These were originally posted here.

This is Keener’s amazing story. I hope you will all start picking it up. There are several more installments some of which she is writing just for this blog in order to finish her story.

She is completely recovered today and this is an amazing testament of strength and the human spirit.

Hotel for the mentalists

This post tells more about my experience of withdrawal from the antidepressant, Effexor, and my less than positive experiences in the mental health system.

A quick recap first. At this point in my story I am in severe Effexor withdrawal – I was psychotic, manic, physically ill and volatile. In the space of a few hours I had taken a little sojourn up my local high street in the nude; burst into a community hall of unsuspecting meeting attendees (still naked), scared off an ambulance (partially naked) and been escorted by her majesty’s boys in blue to the local station (fully clothed) only to be told by the doctor that I was fine. Last but by no means least – later that day I physically attacked a dear friend of mine while he lay sleeping.

The alternative title for this blog is ‘For goodness sake, will somebody lock her up!’. I will attempt to explain how difficult it was to get me sectioned and the all-consuming devastation that Effexor withdrawal brought about in my mind, body and life. This is also a story about how difficult it was for my family and friends to go through, as we all struggled to accept and understand what was happening to me. I was confused and confusing…

The morning after I smashed my fist into my friends face, was spent with me whizzing around the house – trying to burn most of my possessions, but keeping those items that were imbued with mystical energies. The world was being destroyed, we had messed up and ruined Planet Earth, and humans were now reaping what we’d sown so arrogantly, selfishly and hatefully.

But the good news was that I had an important role to play and some humans were to survive and we were all going to meet up. I had a lot of work to do and not much time, as I needed to turn my home into a sorta good vibe energy magnet defense complex.

Meanwhile, back on the reality channel, my friend was having a rather stressful morning. He was tired and in shock and needed help. He had managed to make a few phone calls, Beener was on her way over and a GP was coming to do a home visit, but their arrivals were a few hours away. It would be a few days before the ‘Community Mental Health Team’ and Rapid Response Team rode into town. And you know what they say ‘things will get worse before they get better’….

My friend tried to encourage me to eat, to relax in the bath, to stop making fires and burning my things. So I sat in the bath, purifying myself with flower petals and magic water – which was actually mass-produced, cheap, gaudy pink, pot porri that I must have found at the back of a cupboard somewhere when ransacking the house. Perhaps it was at this point that my friend managed to reconnect up the various TV wires that I had removed to stop the Freemasons and other ‘bad’ humans from beaming into my house. I was on to them – they were evil and scary and hurt people and did mean things- they had no place on ‘new earth’.

My friends recall now that at first they thought that I had been brain-washed by an online cult. I was saying such strange things and was obsessed with the computer. I had been on the net in the last few months reading about ’spirituality’ and yogic philosophies. Now, my friends aren’t daft, but to them that seemed more logical than believing that I had somehow just got mental and flipped.

Continue reading “Hotel for the mentalists”

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