Temple Grandin said recently that the principal emotion experienced by autistic people is fear. Of course, there are any number of reasons for that fear—the experience of having been bullied or otherwise abused, the painful nature of sensory overstimulation, the realities of social isolation, and so on—but whatever the reasons, the anxiety is real.
I have felt the undercurrent of fear all my life, and these days, it’s become more intense. I’m aware that it keeps getting hooked onto a number of different scenarios, both real and imagined. I’m not going to rehearse them, because they are not the source of the fear, and going into particulars would only give the fear more power. None of these situations causes me to be afraid; rather, the fear seems to be there, and it attaches to whatever future scenario comes to mind.
Right now, the fear feels like a chill wind blowing right through me. I have periods of release from it, but when it arises, it’s very difficult. I’m assuming that it’s arising because, having formerly been damped down by five years of benzos, it’s now free to express itself, and it wants my full and undivided attention. And the fact that I keep saying to it things like, “Well, I’m doing the food shopping right now, so bugger off,” doesn’t seem to send it packing. The fear is not getting in the way of my daily functioning. I am continuing to go about my life, taking care of business, fulfilling my responsibilities, and doing the things I enjoy. But I feel like I’m carrying a burden that I’d like to put down for awhile.
Part of me feels that dealing with my fear is a good thing: being able to face one’s fear and handle the experience is strengthening. But part of me would like a serious break, too. So, I’m going to my doctor on Thursday to talk about getting a prescription for Lexapro, an SSRI that is supposed to be very good for treating anxiety as well as depression. I don’t feel depressed, but dealing with the anxiety every day is an emotional burden, and trying a little bit of pharmaceutical help isn’t a bad idea. I don’t necessarily want to banish the fear entirely, since it’s a lifelong issue that needs to be dealt with, but I’d like to lessen its intensity and make it more manageable.
© 2011 by Rachel Cohen-Rottenberg
I hope the medication helps. Carrying around fear and anxiety that is out of proportion to the situation is soul-wearying.
Soul-wearying is definitely the word for it. I’d like to free up my soul for other, more enjoyable things.
I would like to ask you to consider the Lexapro very carefully before you start it.
Read everything you can on it and please let me know if you would like Jason’s e-mail address.
He has some experience with the drug & can give you a first person point of view.
Hi Jennifer,
I’ve done some reading up on Lexapro and found that I could probably live with most of its possible side effects, so I figure that it’s worth a try. I took Zoloft last year, which is the same type of AD, and while it didn’t do much for me, it didn’t cause me any problems, either. Plus, the SSRIs are non-addictive; going off Zoloft produced some odd sensations, but nothing scary. I’d like to take something for the anxiety that isn’t addictive, and apart from the benzos (which are out of the question), there aren’t a lot of choices.
I’d like to chat with Jason about his experience, though, so yes, please send me his email address.
yeesh, do i know what you’re talking about.
having a hard time ignoring stuff often makes it even harder to overcome the fear/anxiety package.
sending you good thoughts=
*good thoughts, good thoughts*
Thanks, Ben. There are times I’d like to tone down that vividly visual and imaginative brain of mine.
Hi Rachel,
I understand your desire to get relief from anxiety. It is, for me, most unpleasant, not only mentally (chronic worry, thought loops) but physiologically as well (palpitations, pounding heart).
I recently saw a video on Temple Grandin, in which she said, if I understood correctly, that anxiety is, and always has been, the major issue of her life. This gave me some comfort to know that it comes with the territory rather than being something “wrong” with me. Just knowing that I have more anxiety than “normal’ people eliminates the self-blaming at least.
I have read, and heard from my doctor, that going off Ativan can cause a rebound effect – the anxiety is much worse after Ativan than before. What I don’t know is how long the rebound period lasts. Is it weeks, months, or years? Does tapering eliminate the rebound or merely postpone it? I’m in the middle of a gradual taper myself and it seems to be going alright as long as I don’t make too big a jump.
I wish you success in managing your anxiety.
Bruce
Hi Bruce,
Are you tapering off Ativan (or another benzo)? Feel free to email me for support if you need it. Even a gradual taper can be tough at times. I found the whole eight-month taper very difficult, but very much worth it.
I’m aware of the rebound effect with Ativan, which is the benzo I finished tapering from in mid-December. Apparently, what happens is that when you’re on it, the drug causes your brain to stop producing GABA, an amino acid that has a natural calming effect. The benzo binds to the GABA receptors, so the brain shuts off its GABA production. When you taper off the Ativan, it takes awhile for your brain to start producing GABA in sufficient quantities again; the result is a very un-calm brain, which can produce an intense amount of anxiety. For most people it takes at least six months post-taper for the brain to produce a normal amount of GABA. I’m now three months in, so I’m halfway there. From what I’ve heard, I’m actually doing better than most people do three months post-taper. I’ve read of people being housebound with anxiety, of not being able to read, write, or even focus on the TV until the six-month or one-year point, and none of those things are happening to me, for which I’m grateful. In fact, very early in my taper, I started going out and taking walks every day, my focus started improving by leaps and bounds, and my mind became sharper by the hour. It was amazing, and all of those things have remained.
I keep reminding myself that this anxiety is all part of the post-benzo healing, which is another reason for not giving voice to all of the things my anxiety is hooking onto. It’s just my brain doing its healing work.
Thanks, Rachel, for all the info on the taper/withdrawel process, and for your kind offer of email support. I am tapering off prescription Ativan. I’ll let you know if I get stuck.
Wow, another person doing a direct Ativan taper! Apparently, we are rare birds. Most people who do an extended taper (the only safe way to go) cross over to Valium, because it stays in the body much, much longer than Ativan. I decided to forego the crossover, mainly because I think that the longer-acting drug would have made me very groggy. Ativan tends to leave the body after 6-8 hours, so I ended up taking small doses four times a day to keep my blood levels up. Otherwise, I tended to go through mini-withdrawals that were so not fun.
More power to you, Bruce!
Hope you find the relief you deserve. Like Ben, I’m sending good thoughts.
Thank you, bbsmum. You’ve talked about how high BB’s anxiety can get, and that if you could cure anything, the anxiety would be the first thing to go. So I know that you understand.
Rachel
I’m sending good wishes, too.
But also writing to say that it’s so helpful to read your thoughts about anxiety, which is something I’ve dealt with all my life. I have to keep reminding myself that most of it is brain chemistry. I think our natural instinct is to look for an external justification [Just look at the news — we live in a frightening world! Of course I feel afraid all the time!] And we assign a moral value to “facing our fears;” implying that taking medication is cheating somehow, or sidestepping the “natural” psychological process of dealing with our emotions.
I don’t actually believe that’s true. But the psychoanalytic model fits so neatly with the way most of us assign meaning to our experience. We believe we’re anxious because we experienced trauma, or because we have a stressful job, or because our parents were abusive. It’s hard to make the mental shift to the biochemical model: we’re anxious because we’re not producing enough GABA.
Two excellent books on this topic if you haven’t seen them yet: Peter Kramer: Listening to Prozac and Judith Warner: We’ve Got Issues.
Your point about freeing up the psychic space to do other things is such a good one. I have needed that for a long time.
Best wishes, and I’ll look forward to reading updates on how well the SSRI works.
Thanks, Sarah.
I think that a lot of the mechanism of anxiety has to do with a mind-body feedback loop. I first learned about this in a fear-of-flying course. The instructor said that most people who are afraid of flying are very sensitive people with very vivid imaginations. The trouble is that we get triggered into a vivid image of something bad happening, which in turn triggers an adrenaline rush. Then, the mind says, “Oh, look, an adrenaline rush! Something bad is happening! I must find out what it is and stop it!” And then, of course, the adrenaline rush keeps going and the loop repeats. For people afraid of flying, the trigger can be anything from mild turbulence (which isn’t dangerous) to the thought of a terrorist attack (which most people will never actually experience, thank God). On an airplane, as in life, the key is to be with “what is” rather than “what if.”
On the positive side, my low-level anxiety is probably the reason I’m a very productive person: I keep myself focused on the tasks at hand in order to interrupt the feedback loop and not let the anxiety get in my way.
Many sympathies. I’d say in a lot of ways anxiety has caused me so much grief (it ended my last attempt at college and prompted a move just to get away from the place I associated with so many panic attacks).
I’ve developed a lot of coping mechanisms for it (including ways to defuse “worry chains” and ways to keep myself occupied to interrupt the loop) but I probably spend more time and energy on that than I should.
Hopefully the Lexapro will help.
Lisa, so sorry to hear of your experience. I agree: staying occupied is essential, since it provides a focus away from the loop.
Oops, I have a habit of stating my experiences to establish a commonality. I appreciate the sympathy, but I was mainly trying to offer you sympathy for having to cope with so much right now.
I remember when I had severe panic attacks (years and years ago, they’re mostly gone now), I found that playing co-op Halo and Halo 2 with a friend allowed me to focus without interruption and completely break the anxiety cycle, at least for the day. Was pretty time-consuming, though.
Lisa, no apologies necessary. I express empathy in very similar ways, mainly because I want to let people know that they’re not alone. And plus, when people describe their experiences to me, I get to send the empathy back in their direction. So it’s a win-win!
(((hugs)))
Sorry I’m so late. I’m also sorry for your burden. I’m treated for depression and anxiety with a drung called Aplenzin, which is a kissing cousin of Wellbutrin. Neither of which are addicting, and served me much better than the SSRI’s. Just wanted to put another option out there for you, in case Lexapro isn’t quite the thing. I’ve heard not so great things about it, but again, I can’t do SSRI’s so…
I know you’re very well researched and won’t take something or stay with something if its negatively affecting you. Good for you for getting help. I hope it works quickly for you.
Love you!
Thanks, Laura. I’ll keep Aplenzin in mind for my discussion with my doctor on Thursday. Hopefully, she’ll help me find something to ease the burden a bit.
I’m sure she will. *Sending you peace and protection energy*
Hi
I have been on Lexapro (10g) for a year, specifically for anxiety, and I was amazed at the positive difference it make. I have a son with Aspergers, but don’t believe I am an Aspie myself but the psychologist says I have clearly had anxiety since childhood.
Within days I clearly felt a relief from my anxiety and stress, and I have had no side effects in the past year.
I’m now slowly reducing my use, just to see how I go … but am happy to return to it if anxiety returns. I felt more ‘normal’ on Lexapro than off it. Obviously I’m not a doctor, but my personal experience was a good one. And my psychologist is very positive about it generally.
Wow, thanks for sharing your experience. I’m glad it’s so positive!
Pervasive, intense anxiety without a definable causation is perhaps one of the heaviest burdens on the soul. I have always believed that, as humans, we have an intense need to be safe and secure. Undifferentiated anxiety is perhaps a manifestation on the very cellular level that live events and our genetics have denied us this security and safety and our cellular memory is in a state of constant guard and agitation waiting for the next assault to safety. Someone’s phrase of “soul weary” is a perfect description.
SSRI’s never worked for me and I ran the range of many types from Paxil through Celexa…made me numb which was worse than feeling anxiety. Wellbutrin did help as I tapered off valium which is still my all time favorite, but on an as needed basis.
I hope that you are able to find that which gives the soul some respite…
Phil, I agree with you about not wanting to feel numb. To me, numbness is worse than any feeling, however difficult. I want my feelings; they make me human.
I tried Lexapro about a year ago, then switched to Prozac because I’m also dealing with eating disordered behavior. I’ve found that, while it doesn’t make the fear go away, it does make it a little easier to face. I fall asleep easier at night because my mind isn’t endlessly racing. Thinking about asking my doc about Xanax for situations where the anxiety gets out of control. Best of luck on your new course of treatment.
Thanks, Tricia. Making the fear easier to face is exactly what I’m looking for. I don’t want my feelings taken away; I just want to be able to get a bit of distance on them so that I can look at them more fully and productively. The old anti-depressant I used to take every day, Amitriptyline, did that for me for a long, long time. It was amazing, but it stopped working for me some time ago, and I haven’t found anything to replace it yet. My last prescribing doctor loaded me up with 3-4 meds at a time, and it was terrible for me, so I’ve been wanting to just get my system clear and start carefully again.
“Temple Grandin said recently that the principal emotion experienced by autistic people is fear.”
It wasn’t original with her. A fella in Australia named Lindsay Weekes said the same thing more than eleven years ago.
I have some Lorazepam in my medicine cabinet, I only take it once in awhile to help me get some sleep. I certainly don’t feel “addicted” to it, but you’re making me worry about it. I suppose I could just use Melatonin instead, it seems to work fairly well.
I imagine that a lot of people have come up with that understanding. Temple Grandin’s quote just happens to be the one I read.
Be careful with the Lorazepam. It’s extremely addictive, and it’s often not obvious. I had no idea it was addictive until I tried to go off it too quickly and got a serious wake-up call. If you find yourself taking it more than once in awhile (or wanting to), it’s probably time to find a safer alternative. I use Melatonin for sleep and it works incredibly well.
After I wrote my last comment here, I looked up the drugs I take, and found that Lorazepam is the same thing as Ativan. I don’t know why drugs have to have so many different names! I took a Lorazepam last night because I’ve been sleep-deprived, and that because I’m using e-cigs, which deliver an awful lot of nicotine, which is a huge stimulant.
I also looked up Amitriptyline (also called Elavil), which I also have but very seldom take, because it’s way too effective for me. Last time I took it, I felt very lethargic the next day, or more like “death warmed over”. I guess I’ll just take Melatonin then, I don’t notice any side-effects from that.
Yeah, Amitriptyline works really well for sleep. I took it for years without any drowsiness the next day, but in the past year, that changed entirely. I started getting the same lethargy that you report, and I didn’t like it at all.
“being able to face one’s fear and handle the experience is strengthening.”
I’ll tell you the same thing I think every time the ‘bullying builds character’ meme comes up (besides ‘if it doesn’t destroy you first’). That would be–I’m tired of being strong. Or more accurately, I’m tired of HAVING to be strong.
I hear you. But such is life.
I was really struck here by what you said about the fear not being about the trigger, but rather being something that’s always present and just attaches itself to whatever is the latest trigger. I hadn’t really thought about it like that before, but I’m trying that on to see if it’s also a fit for me. I’m noticing more and more that even when the thing I’ve told myself is the cause of my latest anxiety is resolved, I don’t really trust that. I’m still waiting for the next thing to come along and take away my peace of mind. Like you described for yourself, I can still function. I’m just carrying along this extra burden all the time, and when anything gets added to it, it just feels like too much.
I hope you are able to find something that’s helpful to you.
BTW, I changed my blog address. It’s now dontpanic55.wordpress.com
The fact is, there will always be something difficult that comes along. The key is to not be overly anxious about it. That’s where that burdened feeling comes from, and it gets so old so fast.
Thanks for the new blog address. I will update my link.
This post brings up so many thoughts, I’m not sure exactly what to say, so I’ll just let them come out however they do, if that’s okay.
I am sorry that you have been dealing with higher levels of fear and think it makes a lot of sense to do a medication trial and see if that gets it to a manageable level. In the past few years, I have been on Celexa and then Wellbutrin and am now on a very small dose of Prozac. My psychiatrist seems surprised that such a small dose helps, but I just want to take enough so I can function without being too withdrawn (as on the Celexa) or agitated (as on the Wellbutrin). The way things are now, I can feel enough to face my issues without being completely overwhelmed by them, although things do still occasionally get overwhelming but not for long periods of time.
I remember when I was having a lot of sinus/allergy problems, and my doctor told me certain meds to take before bed and first thing in the morning. She said it was important to break the cycle of pain and stay ahead of it. It seems to me that the same principle would apply here.
Anyway, I hope that you are able to find some relief soon.
Of course it’s okay! Please, feel free to explore your thoughts here.
I know what you mean about a small dose helping. After much discussion with my doctor, I decided to try Paxil, which is an SSRI that targets anxiety. I started it on a low dose last night, and I already feel a bit better. The anxiety creeps up, but I have some distance on it, and I can feel a greater sense of calm. The med is supposed to take some time to kick in, but my system is really clean, and I tend to be sensitive to meds anyway, so I’m feeling the change already. It’s subtle, but it’s there. Hope it keeps up!
Rachel,
Have you read Anatomy of an Epidemic by Robert Whitaker? You should seriously consider reading it before taking Lexapro. I’m not saying not to take it by any means, it may be the best decision in your case, but it’s really important to be making an informed decision based on the best possible scientific research.
Hi Alex,
Yes, I’ve read a good portion of that book, and I’d like to get back to it. I started reading it when I was tapering off benzos and getting myself free of other medications. Given my experience with having medications overprescribed, the hell of getting off the benzos, and everything I’ve learned from the Whitaker book, I am very, very cautious.
At this point, I’ve found that Trazadone works really well for me. It’s a tricyclic, like Amitriptyline, which I was on for many years until it stopped working. I think the tricyclics are where it’s at for me. The SSRIs didn’t do a thing but give me bad side effects and Wellbutrin kept me up at night.
Sorry to come in so late on this but I’ve just had my attention drawn to it. I’m 64 years old and have been taking Valium/Diazepam continuously since 1968. That’s not going to change.
I’ve always lived with fear. Sometimes just a vague undercurrent, sometimes stark panic but mostly somewhere in between. I’ve conquered a great deal of fear but I’m only autistic. 5mg of Valium nocte helps me sleep and occasionally during the day I’ll take another 5mg but I’m well aware of its addictive properties and don’t want to be hooked on a higher dosage than I’m already taking.
It comes down to what I’ve been saying for nearly 50 years: “whatever works!” No shame, no angst, just whatever works.