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Benzodiazepines and sensory issues

November 9, 2009

I thought I would bring a slightly expanded version of one of my comments on a recent post (Being kind to your body, and nasty assumptions) over to one of its own:

I should probably also add that I know I was lucky in the way I reacted to benzos; an awful lot of people do become physically dependent. I got some psychological dependency going for a while, but they did make life much more bearable. For a while, I did take higher than the prescribed dosage (for the first few weeks of the month, until the pills ran out!), just to try to get some relief.

Not considering/knowing that I might be autistic and experiencing very real sensory issues and overload, doctors assumed that I had a huge mess of anxiety disorders (panic disorder, GAD, social anxiety, and even agoraphobia when I avoided overwhelming stimuli). Some of my overload reactions were even seen as psychotic symptoms, for lack of a decent understanding of what was going on. I didn’t know any other way to interpret what I was experiencing, much less the mental health professionals (ouch). For years, I had multiple “panic attacks” every day. Sometimes the only way I could get to sleep was to wait for the waves of “panic attacks” to completely exhaust me. I now know that this is my nervous system shutting down under sufficient overload, out of self protection. After I crashed out of college, I barely left the house for years, trying to avoid the “anxiety”.

Scarily, the more I see of other people’s experiences, the more common this sort of thing seems. That’s the main reason I keep sharing experiences I’ve been trained to find embarrassing, in hopes that someone else can benefit from knowledge I’ve picked up the hard way!

Anti-anxiety meds will blunt your reactions to sensory issues, but do not address the problem. At all. Nor do the various forms of therapy aimed at changing your responses to anxiety-provoking situations; the sensory stuff kicks in before the anxiety-related thought patterns they’re looking at.

Learning that the sensory issues are real, and how they’re working in my case, let me figure out some ways of coping with them, directly. Even if CBT does not work directly to stop the sensory reactions, you can learn to change your reactions to the “symptoms”, once you know what’s going on. Besides learning to work around overloading situations in the first place, and use things like mp3 players to cope. That’s even without taking into account my previously-unrecognized hypoglycemia/diabetes: eat a piece of fruit before leaving the house, avoid >50% of “anxiety” symptoms while out and about. Between the two problems, they account for pretty much all the “anxiety” I was experiencing on a daily basis. Now I know that I can manage this without uncomfortably sedating myself.

These meds did, however, greatly help the muscle spasms. Very possibly for the same reasons that I don’t have many opioid receptors now (wipe out dopamine receptors, you also wipe out related opioid receptors), and do not get nearly as much relief from opioid pain medications*, I have never had a physical problem stopping taking rather hefty doses of benzos–besides just losing the muscle relaxant effect, which was a ton of help with the very painful tardive dystonia I got from neuroleptics. (Which were also prescribed, in large part, to blunt my sensory sensitivity/”anxiety”.) I have atypical reactions to a lot of medications–not just psychiatric–due to both neurology and ethnicity.

This is the only type of psychiatric medication I would consider taking again, though not for the main reason it was prescribed before. A lot of people do run into problems, and I am definitely not trying to dismiss or minimize their experiences. These are some tough choices.


* Also probably feel the effects of not getting much relief from endogenous opioids, either, leading to a lot more pain. Both facets are apparently a common problem under the fibromyalgia diagnostic umbrella. I have also been diagnosed with fibromyalgia, for lack of a clue why these things were happening, when my pain is coming from the same old dystonia and associated med-induced problems. I wonder how many other women in particular, now that they’re pushing atypical neuroleptics so hard, are getting diagnosed with fibromyalgia for the same reasons?

I also wonder how many other people are not getting appropriate treatment, especially in the UK, to quote from that previous post:

It’s been much worse since I moved to the U.K., since the NHS is weird about benzodiazepines, thanks to earlier overprescription and a huge class action suit. Flexeril/Skelaxin/etc. don’t work for me. And I just figured out a few months ago that it’s not fibromyalgia, it’s the same old crap! I am also concerned about stigma if I seek specific treatment, since it did come from neuroleptics, and I’ve already run into medical stigma here over the (bogus) bipolar diagnosis. “You brought it on yourself by being crazy, now live with it” is not helpful.

The NHS Direct patient information on fibromyalgia used to mention diazepam/Valium as a useful muscle relaxant. Now it does not.

One Comment leave one →
  1. April 1, 2010 9:39 am

    Benzodiazepines were also the only kind of psychiatric drugs that had anything resembling the effect they were supposed to on a long term basis, for us. And yeah, using them to mitigate sensory overload is definitely something we can recall having done, particularly when we were trying to go to university. The one problem was that by the time we’d taken enough for things to no longer bother us, we’d be pretty groggy and trying to think through a fog.

    The one other beneficial effect they had was to make us literally only capable of thinking about one thing at a time– our brain doesn’t handle multitasking well under the best of circumstances, but will attempt to do so anyway thanks to years of conditioning, telling us that “you could do it if you really wanted, you just don’t feel like trying.” And that was often a problem at university in classes where we’d get handed complex labs or assignments that weren’t clearly delineated into steps, because it was assumed that the ability to easily break down any sprawling complex task into a discrete series of steps was an ability that “everyone” should naturally have by their college years. The worst was a class that was kind of a “perfect storm” situation for pushing our normally mild movement disorder over the edge into something more significantly impairing. And so we’d end up popping Xanax just to narrow our focus down enough to be able to channel all available mental energy into things like “move arm” and “move leg” and “move legs in rapid succession to walk.”

    I would like to be able to stop taking them someday, but unfortunately we can’t at the moment, because they’re literally the only thing we have to control what seems to be some type of seizure disorder (we have no health insurance, and don’t dare see a neurologist in the US without having it– “pre-existing conditions” and all that), due to their anticonvulsant properties.

    We’ve taken them for genuine panic and anxiety, also, although always in a resentful sort of way, if that makes any sense. As we mentioned in comments to this post, despite the fact that we’ve been in some really hellish mental states, psychiatry was not the magic bullet that got us out of them. We always had an instinct that we couldn’t shut up even when doctors were busily telling us not to listen to it, that anything they could give us would be a patch over the issues at best– that the most it could do would be to shove problems away while we were in an environment where we couldn’t properly deal with them, and we would still have to confront them eventually. That although we couldn’t make ourselves insta-better with positive thinking, diet, exercise, etc, the problem didn’t originate in an intrinsic defect within us– rather, it came of aspects of our own neurology and personal temperaments having a terrible (if understandable) reaction to being immersed in a society that is emotionally and spiritually twisted in many ways, and in a family which bought into some very damaging ideals. So while we don’t care for concepts of “psychiatric disability” that equate it with physically-rooted “invisible” disabilities, we are nonetheless de facto disabled in the vast majority of American society, simply by having to live in it, because it will always be rubbing up against our neurological inclinations and personal needs and values in very unpleasant ways, because of the deep-rooted fears it instilled in us and did nothing to calm, because of the destructive ideas we were allowed to “learn” in it.

    Not that I’m necessarily idealizing any other society– I’m sure there are plenty of others in which we’d have had problems, if perhaps different ones. Still, in any case, I continue to think that we were in many ways more perceptive of reality than the “sane” people who surrounded us– that there would have been far less sense in continuing to smile through the indifference and destructiveness, rather than falling deep into bad mental states when we thought the limited options revealed to us were all that existed.

    Being plural ended up beneficial to us in the long run– not in the sense that we used it to deal with trauma to the extent that’s usually claimed, but that it eventually allowed us to develop a kind of internal culture that was, in many ways, saner and more balanced than the one we’d externally been thrown into, once we began taking ourselves seriously as separate individuals. But to most of psychiatry and most of society, that (among other things that helped us) is actually “unhealthy” because it’s “believing in your delusions,” even when it resulted in us being clearly and provably happier and less prone to anxiety, depression, etc. Sigh.

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