To Med or Not to Med

 I know how you
move into me. You come
in tides, squeezing through every pore
like nightfall that doesn’t know how to stay put. You don’t know
how you rip apart my senses, bleeding glorias as you
pass though me in double osmosis.
(From my poem, “Touch”)

If you’re reading this post and are on the autism spectrum, you’re already aware (in some cases painfully) of how sensitive our nervous systems are. This sensitivity affects many aspects of our lives, from difficulty tolerating sensory stimuli to impaired ability in handling stress, as I’ve mentioned in previous posts.  I’m going to deal with the sensitive (no pun intended) subject of using medication (such as SSRIs, other classes of antidepressants, and other kinds of medication that affect mood and brain chemicals) in this post.

From what I’ve observed thus far, this topic has been debated from multiple viewpoints, even outside the autism community. Just Google the subject of antidepressants and autism and I’m sure you’ll be overwhelmed by the number of results. Certainly many of us have heard about overuse of these medications and horror stories about side effects, ineffectiveness of medications, or symptoms worsening – or we may have gone through these experiences ourselves. And of course, there is always the question of who benefits by the medication: there are stories of medical professionals pushing such medications to the parents of children on the autism spectrum in order to make their behavior more “tolerable”. And of course for us adults, there’s also the question of something being for our “own good”.

That being said, I realize that many people have genuinely been helped by antidepressants and similar types of medication. In the case of some people with Asperger’s, the more exasperating issues in our lives – sensory overload, panic attacks, and other problems – have been mitigated by using these kinds of medications. Since there is such a wide variety of beliefs and philosophies about the use of these kinds of medications, as well as a wide variety of physiological responses to them, I will mostly speak about my own experiences in this post as well as include some research I’ve done on the subject so far.

My Story

Besides some of the major reasons that I have trouble handling stress – low tolerance with frustration and unpredictability, negative emotions caused by my own thinking (i.e. early maladaptive schemas and negative core beliefs), and post-traumatic stress disorder – I’ve also had to contend with one other major challenge: my raw, frayed nerves.  They have been one of many factors in the panic attacks and outbursts I’ve had in my life and when overstressed made me feel like I was out of control.

My sensitivity to certain kinds of stimuli has been around since I was a child. My mother tells me that up until I was about 3 or 4, I would doff my clothes at the first opportunity and would be content to run around even in public in just underwear – my guess is that clothes felt strange and foreign to me. Looking back, I remember a sometimes “hot” or “heavy” feeling when wearing them – and I remember sometimes itching from the fabric. Later, I noticed a low tolerance for pain and a tendency to become overloaded when presented with too much stimuli at once, especially sound. It was as if my brain would scream, “STOP IT! THIS IS TOO MUCH!” I could feel myself jittering inside during these moments, my chest tightening, my reaction time slowing down to the point of where my nerves would freeze and words would become harder to force out of my mouth.

And when I became a teenager and was living with my aunt and her family in Middletown, the same things kept happening. I remember “freezing” often back then, especially when my aunt would yell at me. And of course, freezing up meant that I wouldn’t speak…which would lead to me getting hit. And in turn, my nerves would become overloaded, jittery, and frayed even more. Sometimes, I just couldn’t take it anymore and I’d explode and scream back…which of course was welcomed with more screaming and hitting. By the time I was about 13 or 14, I concluded that a) she took pleasure in watching me react, shake, and cry, and b) my reactions would sometimes provoke her even more.  Eventually I trained myself to minimize my physical (and in turn, emotional) reaction to things. Or so I thought. Basically, I ended up bottling up as much as I could, holding it in while my brain kept screaming for everything to stop…until sometimes I would end up exploding. And if you’ve had Aspergian temper fits or meltdowns, you know just how powerful that kind of explosion can be.

Fast forward to adulthood. Somehow, I got through college without too many panic attacks or meltdowns, but they began to start up again after I graduated and moved to Columbus. Like I said in my first post on stress and anxiety, I spent a lot of time “psyching myself out” to deal with things, including life in general, stress, and stimuli that challenged my ability to tolerate them.  It wasn’t until I considered the fact that I might have an autism spectrum disorder that I even began thinking about these incidents and began putting two and two together. I’d bottle up my displeasure and discomfort at one thing, then another, then another…until one little thing (e.g. a drop in blood sugar due to a missed meal, too much time under the bright lights and on the white floors in WalMart, being barged in on inside my office at work) would just push me over the edge, and I was off. My pressure cooker lid would fly off and crash through the ceiling while all the rage, anger, frustration, hurt, and steam would come flying out.

As I mentioned in my first posts, these outbursts frightened me. After learning about Asperger’s, I began considering that my nervous system was at least one factor in my problem. One additional challenge is that I’m also a type 2 diabetic who’s had difficulty with controlling my blood sugar – so this plus raw, frayed nerves is NOT a good thing. Back in April, I talked to my counselor about my concerns and the connection between Asperger’s and my panic attacks, wondering if I might need medication. She then suggested that I speak to my doctor about the panic attacks and outbursts.

But I was a little uncertain about going this route.  I had a bad experience with Zoloft about ten years ago, when I was first diagnosed with PTSD as well as depression. Soon after I’d begun taking it, I found myself feeling like a zombie. It was as if I was experiencing reality through a cotton wall, and I was literally living the cliché of “going through the motions”. In addition to this, I had completely stopped writing.

 Shortly before I spoke to my doctor, my fiancé and I found and listened to a presentation by Dr. Temple Grandin where she mentioned the use of medication to help anxiety and other conditions in people on the spectrum (this presentation is available on YouTube). She spoke briefly about the role of medication in helping those who are on the autism spectrum; she herself has been on the same medication for several decades because of how it has helped her. A couple of things stood out in my mind as we listened:

  1.  What works for one person on the spectrum will not work for another. Our physiological makeups and nervous systems are unique to begin with, and being on the spectrum makes this even more true (hence the axiom “If you’ve met one person with Asperger Syndrome, you’ve met one person with Asperger Syndrome”). Since we’re all different in how we express Aspergian traits, it would make sense that we’d all react differently to antidepressant and similar types of medications. What works for me will not necessarily work for you, and vice versa.
  2. Start with lower than normal doses. During the presentation, Dr. Grandin mentioned that it is best to start off with lower doses of an antidepressant because our nervous systems are so sensitive to begin with. What would produce positive results in a neurotypical might cause side effects, worsening symptoms, or even new negative symptoms in a person with an autism spectrum disorder.

 

I’m sure that either or both of these factors might explain why I had difficulty with Zoloft. My guess is that the dose was probably too high and/or my system just didn’t react well to Zoloft – hence the numbing, cotton-wall effect I kept experiencing. 

Dr. Nick Dubin in his book Asperger Syndrome and Anxiety: A Guide to Stress Management also mentioned the issue of medication. While I am mostly focusing on SSRI-type antidepressants in this post (which is what I have personal experience with) he also mentions other classes of medications, such as anti-convulsants and beta blockers. He relates the use of medications to the management of anxiety…the very thing responsible for my panic attacks and outbursts. And of course, my jarred and frayed nerves played a very large part in my anxiety picture.

A few weeks later on my next doctor visit, I spoke with her. After listening to what I told her as well as examining results of my recent blood work, she prescribed an additional diabetes medication, along with…a low dose antidepressant. She told me about the various options for this kind of medication, and I told her about my prior troubles with Zoloft. She ended up prescribing for me 10 milligrams of Citalopram (a generic form of Celexa).

The Results

 After almost a week on it, I noticed one major benefit: the edge on my nerves was GONE. I began to really reflect and then understand exactly how my nerves had felt to me – like they were functioning right on top of my skin. NOT FUN. And my emotions and feelings had felt as if they lay immediately below the surface of this neural network on top of my skin – which made my nerves feel ten times worse. Now, it felt as if my nerves were below my skin – where they should have been.

 As I first began to take the medication, I was a little afraid that I would lose my ability to feel and end up walking around like a zombie again – which in turn would make me lose my ability to write. But that did not happen at all. I found that my emotions were still readily accessible, which is a GOOD thing…and I found I was still able to write – also a good thing! I noticed, however, one major difference: I sometimes I had to dig a little deeper to find the source and wellspring of my creativity. I wrote two poems within two weeks of beginning the medication: Detonate, which talks about my whole experience of going on meds and the before/after differences, and Meridians, which was written for a writer’s prompt over at We Write Poems that directed the writer to listen to music and then write a poem.

Reflecting now about three months later, I find that the edge on my nerves is still gone most of the time. My anxiety is a little easier to deal with: I don’t explode or get angry as quickly or as frequently as I used to.  I can still write, although I sometimes find that a short period of a sort of meditation is required to bring everything to the surface so that it will find its way to my brain and bloom into pictures, which eventually are translated into words. And yet sometimes, I still have spur-of-the-moment explosions of inspiration which begin translating themselves into words very readily.

Another interesting effect has been a slight increase in my clarity of perception. I have a personal theory, which is based on the “intense world” theory of autism: our nervous systems might sometimes shut off certain channels (as I mentioned in my post on functioning in a love relationship) if it determines that we might experience overload or overstimulation. I suspect that maybe I was attempting to selectively ignore or shut down channels of certain sensory input just to keep myself from overloading. But now, I seem to better notice things I didn’t get before: tone of voice, facial reactions, even the notice of my visual perception of color and light has increased. And now, certain things are beginning to make more sense. For example, after my recent office move, I understand now why I was so nervous and jittery in my old office: it had white walls, overhead florescent lights, and I worked at a white desk (ugh!). So basically, here’s my theory: you won’t notice the nuances in a Bach organ piece if the sound is so loud that your ears begin to bleed. You just want the damn bloody thing turned down or OFF.

 And another third phenomenon is the eruption of a more visually artistic expressive side of me. If you’ve been following Raven’s Wing Poetry, you’ll notice that lately I’ve created some visual poems – attempts to marry words with pictures. Sometimes I’ve also created pictures that aren’t necessarily part of my words, like the visual poems are, but instead illustrate my words (a good example is “Fear” which appears with my poem “Tears and Teeth”). I’ve taken up drawing again – something I’ve not done since high school – and my interest in painting has rekindled. I find it easier now to be patient, to sit down, and to try to let the images float up to the surface and then channel out through my fingers, either through digital medium or through graphite or ink and onto paper (the paints are new and not yet opened). I recall hearing the late Jim Morrison in an interview mentioning that during creative improvisational acts on stage, he would just let his subconscious play itself out (which explains a lot about him, but I’ll save that for another time and place) – basically, I find the same thing happening, except in images. I first noticed all of this happening after a local mural artist died relatively young as the result of a lung condition, and truthfully I don’t know if all this has anything to do with his death (i.e. something in my subconscious unlocking) or if maybe the meds are helping me focus, visualize, and contemplate more readily in order to produce these images. Or it could be both. That remains to be seen.

 And after all of this reflection, I see that Dr. Grandin’s wisdom has proved to be right. All that I needed was that low dosage, and just to take the edge off my nerves, which has helped TREMENDOUSLY.  Knowing that I only needed help with anxiety and that I have Asperger’s, I believe that my doctor (who, by the way, is a DO and an integrative medicine practitioner) prescribed wisely. She listened to me and acted accordingly – with positive results.

As I have emphasized earlier in this post, I will say it again: our systems are all different, and “your mileage may vary”. What worked for me may not work for the next person, and some either do not need or prefer not to use medication of this nature. I totally respect this point of view, with the understanding that we each need to do what is best for ourselves.

Additionally, I understand that the medication will not solve all of my problems. I still am in the process of forming better coping strategies for the stress in my life, and have committed myself to this goal. I will say that with the edge on my nerves gone, it is easier to think rationally and with enough insight in order for form these strategies. As I said earlier, I plan to continue chronicling not only my own journey in coping with stress and anxiety but also providing more information about such coping mechanisms so that others may benefit from this information. Stay tuned for more updates. And in the meantime, talk back to me – what have been your experiences with medication? Has it helped you in your efforts to better manage your anxiety? Have you found ways to cope without medication?

Until next time,

Nicole

 

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One thought on “To Med or Not to Med

  1. Dear Nicole,

    I am surprised that your interesting post did not draw more responses, despite the relevance of the question. I can only fill in a personal experience but maybe with a twist.

    Being an undiagnosed Aspie back then, I was treated for several years for depression and anxiety which even necessitated several hospital stays. For more than a year and half, the prescribed anti-depressants, mostlySSRIs, did not bring about the hoped-for improvement. Most ‘normal’ patients would have rightly given up out of frustration and despair.

    The reason I went on to try yet another combination of drugs is my professional background as biochemist / cell biologist. This had implanted a strong conviction that there -should- be some substance(s) that would finally elicit a positive physiological-psychological effect. Plus the knowledge that one has to wait three, better four weeks until reliably evaluating effectiveness of drug and/or dose.

    Patience requested. Ouch. But it paid off in the end. For four years by now I am now on a medication pattern that keeps me highly functional in many aspects. Which substances I use is irrelevant since they will not necessarily help anybody else. Suffice to say it is a combination of an SSRI with an anti-epileptic (!). Some of the latter are increasingly recognized as being anxiolytic.

    Like you described, finding the right dose was highly important although I came in from the other side, not surprising given the clinical history. I had to reduce until problems would resurface and then go slightly up again to find the equilibrium between over- and under-dose which of course are both equally bad.

    A related issue, often discussed, are unwanted side effects. Again, from personal experience and some reading as an affected patient, patience might pay off here as well. The skin reactions and heat waves (term? sorry, no native speaker) I experienced went away after some weeks.

    Taken together, maybe, some of us are giving up to early to reap eventual benefits of anti-depressants et al. For me at least they may have been live saving. Literally.

    All the best

    MadProf

    P.S.: Subscribed to your wonderful blog at the same occasion.

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