**NOTE** if you’re interested in leaving comments on your experiences of this phenomena please do so on the Facebook page. Also if you’d like to see how this happens to a lot of folks, please go read the comments.
This is the second of the “IT GETS BETTER” series. The “It gets better” collection will be a series of republished posts from when I was gravely ill from the psych drug withdrawal process and the following protracted psychiatric drug withdrawal syndrome. So many folks out there are now going through the heinous process of finding their way through psychiatric drug withdrawal syndrome and other iatrogenic injuries from psychiatric drugging.
While many find their way through after weeks or months, for others it can take years to really get out of the deep disability and darkness it creates. I’m going to start reposting my personal pieces from those difficult days, so that people can see how far I’ve come and find hope that they too might come out of that darkness and find some peace and joy again. I know it’s possible from my own experience and from the many who have found healing and wellness again on this journey ahead of me and with me.
Most of these were written from within a dark fog of various sorts of pain and hellish sensations. I will be leaving them largely unedited, so consider that when perhaps something is not clear.
✶✶✶
#2 from the It Gets Better series
from 4/27/2014
Extreme sensitivity to noise, touch, movement, commotion etc…(brief personal update)
The title of this post is the subject line of a post I placed on my benzo board and also sent to a few of my friends who’ve gone through this in the past. I’m not able to write much these days and yet I know there are lots of readers of this blog who would like to know how I’m doing and so I’m taking this opportunity to share something I wrote to other people coping with benzo withdrawal. The sensitivity I speak of has been around for a long time. I’ve been like this for a good year now. So I remain housebound and isolated as it’s extremely difficult to speak. I am able to get up out of bed more often and see improvement in that regard, though it’s not consistent at this point. This hyper-sensitivity, I should add, is only one of a vast and mind-boggling collection of strange and often debilitating symptoms withdrawal has brought with it. I had none of this before I was medicated and neither did others who complain of similar issues brought about by their own withdrawal. In this instance I’m talking to people who have withdrawn from benzos and sometimes other drugs as well simply because that is where it’s easiest to find folks who’ve come off psych drugs. (since the writing of this article I’ve found that these broad, systemic issues are common with all psych drug withdrawal and seems to involve an autonomic nervous system injury see: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.)
This is what I posted to the board:
I’m trying to figure out what people call the crap that keeps me from being able to leave the house. I’ve not thought of it as agoraphobia though it’s the closest word I’ve seen used for my experience. I’d like to see if others have this more particular general experience. Perhaps the title of this post will attract others who feel this way.
I can’t go out and I suppose some might call it in part agoraphobia but it’s not that I’m actually scared of going out or that I don’t want to go.
It’s that my raw nerves can’t deal with the stimulation of being out. I also often have to have the house empty of noise and commotion…the animals have to be kept away from me etc.
For me it’s all about not being able to tolerate stimulation that is inevitable if I leave the house…the sort of stimulation I must avoid feels like physical violent assault if I don’t manage to avoid it.
This includes radical movement sensitivity if I get in the car…disorientation and motion sickness upon moving.
I’ve never thought of this as agoraphobia…but certainly if I were forced to face my sensitivity to stimulus I would feel fear…but no one is making me leave the house…
also it’s not just stimulation but physical inability…I get sick often if I sit or stand for more than a few minutes…
the last few days I’ve been going into the yard for a few minutes at a time with a camera…it’s nice since it’s spring. And it’s a big deal just stepping outside…the thing is I can go into the house quickly.
so anyone have this sort of insane multiple sensitivity to all sorts of stimulation?
It varies in severity but is generally always to bad to venture into a public sphere and that includes doctors and dentists and stuff…so I cross my fingers I don’t need one until it passes.
These are three of the many responses I found helpful (and got permission to repost) I ended up getting several others that validated that this is commonly caused by the benzos and that people never had these issues before withdrawal. I know much of this already but sometimes need to be reminded as I go through it because it’s very hard to cope with:
I agree with you, it’s hard to call this agoraphobia proper as it has more to do with the system being in state of hyperarousal, the result of which is typically intolerance to or hypersensitivity to most stimuli.
You used the word “assault” to describe your experience. This is exactly the word I’ve used in the past. That, and the sense that my brain could not filter out any of the stimulation from the outside world in such a way as to make it tolerable. Consequently, I stayed holed up in the safe corner of my dark office for four months straight, sun clips on my glasses and my fingers poking into my ears only to be removed because I couldn’t even tolerate that. Mind you, I live alone. It was winter, so except for my bedroom window, which always remains cracked, this place was pretty buttoned up and quiet, or so one would have thought; it sure as hell didn’t sound quiet to me. The sound of my own breathing or the ticking of the battery operated clock that sat on the other end of the house also felt like they were assaulting me. It was just crazy. So, yeah, this is a very real, understandable phenomena, one which is detailed on the various lists of withdrawal symptoms, but usually parted out to look something like this:
Hypersensitivity and/or hyper-acuity to sound, light, touch, smell, movement, etc.
In a very real sense, in benzo withdrawal the brain seems to lose its ability to filter out stimuli. Aside from the hyperarousal piece, I’m not altogether sure why or what part of the brain is being affected, but there you have it. It’s an experience that can be validated by many who have been through this ordeal. It was this very sensitivity to everything around me that served as the barometer of my own healing; as my sensitivity lessened, I began to see improvement over all. That said, I am still fairly hypersensitive to sound (though not nearly to the excruciating degree I experienced during those earlier months) and still prefer to live in silence when at home. Quite often I wear swimmer’s ear plugs if I have to attend a meeting, class, or anywhere I know beforehand that someone’s voice is going to be too loud or grating for me to tolerate.
In a way, the sensitivity you are experiencing is a message from your body that to protect it from the outside world, to reign things in, as it were, keep things quiet, much like what we might do to protect a new-born infant from too much outside stimuli as their brains simply have not developed that filter most children have fairly well-developed by the age of 2 or 3. I’m guessing you’ve seen a new-born when it has suddenly been startled by, let’s say, a sudden sound. The reflex typically manifests in what looks like a full body jolt. So, in this regard, in withdrawal our brains seem no different from that of a new-born.
A second comment:
From my experience with lots of folks in benzo withdrawal over the past 18 months, I can say that I hear of many, many folks who experience this kind of “agorophobia”. I think Ashton mentions it in Ch. 3. And it is just as you described. It is not what we typically think of as agorophobia. It is hyper-sensitivity to stimuli.
I think it is our bodies natural defenses, protecting itself from over-stimulation. When the sound of people’s voices actually hurt, we learn to avoid them. When the exertion of getting dressed and walking to the car is exhausting, we avoid that, too. I think we should listen to our bodies and not try and “push past” our resistance, although some will disagree with me.
I was poly-drugged for 10 years (see sig line) and some of us simply can not force ourselves at stages of our recovery. Exercise, for example, seems to flare up my symptoms. For me, the world has just been far too stimulating to engage in during my recovery. I wear sunglasses all the time. I limit contact, including phone contact. I keep “stress” (stimuli) to a minimum. Interacting with people has been simply too risky and frustrating. And I just don’t have the endurance and haven’t for quite some time.
I am completely confident that this will completely resolve once the intense physical symptoms ease off. I have had a few “windows” and all of this evaporates for me. I believe it will be the same for you too, Gianna. You have been through so much. Trust your body to tell you what it needs in this regard. You re not alone in this either. Lots of folks suffer in this way (with the agorophobia).
Take care,
H
And a third comment:
Yes, I suffered similar things…and i would call it agoraphobia…and to my mind as well it was a way of reducing sensory stimulation…it eventually passes. I had it during post withdrawal BOTH times. If i were an experiment, I would have replicated results.
Since november 2008 while still on meds plus withdrawal would say I didn’t go out for a year and a half? Maybe more? Still rebuilding my ‘outside’ life…its hard…no doubt….its like living in a hyper awareness state…I still have trouble now, too…but its less and less as time wears on…and I never pushed myself, either…thats great you are getting out in your yard! It’s so very pretty! 🙂
✶✶✶
**NOTE** if you’re interested in leaving comments on your experiences of this phenomena please do so on the Facebook page. Also if you’d like to see how this happens to a lot of folks, please go read the comments.
Click here for the “It Gets Better” Series
During these times I speak of in the series I was unable to sit upright in bed. I was only able to walk to the bathroom and rarely to the kitchen. My muscles became totally atrophied. I was too weak to hold a toothbrush up to my mouth and therefore went a couple of years without doing what most people consider simple acts of hygiene. I wrote with the laptop propped on my knees and my head propped up a bit with a pillow. Writing was a lifeline that helped me continue. It’s been a source of great joy to find out that my keeping this blog has helped so many others.
This is not my reality anymore. I am up and out of bed. I practice yoga daily. I dance, I walk and I cook and run errands and do chores. I have not achieved perfect functioning. I still can’t make firm commitments or travel. Still I can enjoy many things in life and I’ve developed a deep appreciation for what I’ve been through and how much it has taught me. Life is a wondrous thing and simply being alive is a reason to be grateful as far as I’m concerned.
For the entire withdrawal documented see here: Monica/Gianna’s withdrawal documented. To see how radically improved I am please visit the personal posts from this year (2014). Or you can also visit Mad in America, where there is a collection of posts I’ve written.
This radio interview is good if you prefer listening to reading.
For a quick history in two parts read these two pieces:
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
More: IT GETS BETTER
See also: The anniversary posts: the 5 years off psychiatric drugs documented
Everything matters 