Disclaimer: In this post, I’m going to describe my ongoing experience with pharmaceuticals and my process of weaning off them. I speak only for myself, in the knowledge that each medication affects each person differently, and that the process of weaning off medications is unique to each individual. In other words, everything I write here is descriptive of my own experience and is not intended in any way as a form of advice.
Despite the severe symptoms that accompanied my abortive attempt at Lorazepam withdrawal, my progress with weaning off my other meds has been going very well. In fact, except for the Lorazepam, I have stopped taking all of them. In April, I went cold turkey off Amitriptyline (which I’d been taking for over 20 years) and weaned off Topamax (which I took for a truly horrible six weeks). On May 1, I began the process of weaning off Zoloft, and took my last 25 mg dose on the evening of May 14. Last night was my first Zoloft-free night in seven months, and wow, do I feel better! On May 4, I began stabilizing on 1.5 mg of Lorazepam per day in three .5 mg doses, and that seems to be going well.
When I was taking both Zoloft and Lorazepam, I was sleeping about 6-7 hours/night. Last night, with no Zoloft (and only Lorazepam), I slept for 8 hours and had a series of very powerful and vivid dreams. And I woke up happy! And energetic! Without an anti-depressant! Can you imagine? In researching the side effects of various medications, I learned that Zoloft can cause insomnia (!), so it wasn’t exactly the best thing for me to take, given that my main challenge is, um, insomnia.
Isn’t it amazing that I’ve figured this stuff out in the absence of a medical degree? It’s astonishing what you can do with an Internet search engine and the ability to read.
I’ve also found that weaning off Zoloft (and other SSRIs) can cause “discontinuation syndrome” (which sounds suspiciously like a euphemism for “withdrawal” to me). This “syndrome” can start 1-3 days after the last dose and can include irritability, agitation, anxiety, insomnia, dizziness, vertigo, lack of coordination, nausea and vomiting, and flulike symptoms such as fatigue, lethargy, muscle pain, and chills. You’ll notice that the subtle side effects of acute Lorazepam withdrawal (seizures, acute suicidal ideation, and death) do not appear on the Zoloft withdrawal list, so I feel confident that I can weather the Zoloft discontinuation for however long it lasts (and may it not last long).
As for weaning carefully off Lorazepam, I’m going to wait until the Zoloft withdrawal is over. Otherwise, I won’t know how much is due to the Zoloft withdrawal and how much is due to an overly confident Lorazepam taper. The good news is that my regular doctor has been a gem about this whole process. I sent her information about how I can very, very gradually taper off Lorazepam, and she’s completely supportive of what I want to do. She’s going to do her homework so that she makes sure I’m tapering slowly enough and at the right doses. And she also plans to stay in regular contact with me as I go through the process, which will take several months. She knows that weaning off benzodiazepines is no fun. At all.
Of course, at some point, I will get to so low a dose of Lorazepam that I’ll start to experience insomnia. This is the part of the whole process that scares the living shit out of me. My insomnia (first controlled by Amitryptiline in 1987 and now by Lorazepam) began in early childhood and was induced by protracted trauma that included consistent sleep interruption and deprivation. Very, very bad stuff. Coping strategies aren’t enough. I have many coping strategies, but the only thing that has ever helped me overcome the insomnia is medication. Fortunately, the other doctor at the family practice is very keen on homeopathic and other natural remedies, so he is going to help me try a non-pharmaceutical alternative when the time comes. If the natural remedies don’t work, however, I am going to get a prescription for a new medication called Silenor, which treats insomnia and is not addictive. It seems to be based on a tricyclic anti-depressant (similar to the Amitriptyline I used to take, but without many of its side effects).
I’ve come to realize that the goal here is not to be medication-free. The goal is to be able to sleep. Of course, if I can do that without pharmaceuticals, all the better, but I can’t be a purist. Without sleep, I have no quality of life at all.
Which leaves me wondering: how much of my insomnia is due to autism and how much is due to trauma? I’d like very much to hear what your sleep patterns are like and what your challenges have been—whether or not you have a trauma component thrown into the mix. Hearing from other autistic people about sleep will help me start to get more clarity on how to separate the effects of trauma from the effects of autism. Of course, to some extent, I can’t separate them. The trauma was even more acutely damaging given my autistic sensory and emotional sensitivities, and given how acutely the ordinary world affects me, the autism itself can cause my system to feel very traumatized. Nonetheless, I would like to understand the origins of the insomnia as well as I can, and hearing about your experiences would be very helpful.
© 2010 by Rachel Cohen-Rottenberg
I’m happy to hear that it’s going well for you. I found the same thing, that after I went off the antidepressants I felt much happier.
People with autism can often have trouble controlling their sleep cycles. This might be part of the reason you experience insomnia. I used to take sleeping pills but they felt chemical and I tried to avoid them. A few months ago I started taking melatonin. It’s a natural chemical that your body produces to make you tired. I wasn’t sure about it but it worked, and it felt like a natural sleep. I wasn’t even tired the next day.
You can usually get it in the 100 and 300 mg tablets. The studies that have been done show that it actually works better in smaller amounts, like 30 mg. I use the 100 and that’s perfect for me. Melatonin only works for people who have trouble falling asleep. So if you’re tired because of jet lag or because you’ve been staying up working too much, it won’t have much of an effect on you. My boyfriend is a neurotypical, and I gave him one when he had been up all night answering phone calls for work. It did nothing for him. I only take it when I need to take it.
If you’re interested you don’t need a prescription to get them. You can find them in drug stores. And if you don’t like them, they’re not that expensive so it’s not much of a loss. I was just thinking if you wanted to go off of all of the drugs, the Lorazepam included, this could help.
i’ve only had one sleep issue of note. my falling asleep was interrupted while away at university, constantly, continually, for months and months. I found even after I left this particular situation, I had trouble for about five years or so afterward. It seems as though I became hyper vigilant during the process of trying to fall asleep, and any noise or interruption would keep me from falling asleep. Twenty years later, I rarely have problems falling asleep, or staying asleep, except after daylight savings time changes, every spring and fall, no kidding. No, I don’t know why
Princess and the pea, that’s me.
I do know that sleep deprivation can lead to a whole bunch of different mental, emotional and physical ailments, so I’m not at all surprised that the thought of insomnia terrifies you.
My 6yr. old dd has aspergers. She was diagnosed at 4 and about a year ago we started her on some meds to help her fall asleep. She was staying awake in her room for HOURS (and keeping very quiet so I didn’t realize for a long time) During the summer when she would sleep in till 11am or later I started checking her sleep habits. She was up till midnight or later reading or just trying to self soothe. (hair pulling, face/hand rubbing) We give her Clonidine and have been pleased with it.
I have insomnia problems most of the time as well. I’m aspie and I have some trauma in my past, from about four years ago. Most of my insomnia is related to my autism, I would guess, because I’ve had insomnia all my life. Trauma doesn’t help it any though. At the moment, my regular medications happen to help me sleep (in the morning: zoloft, birth control pills, claritin, singulair, and klonipin, which are all fine during the day for me. at night: clonidine, for my Tourette’s, which is actually blood pressure medication and knocks me out pretty well). I’ve only been on those meds for the past year or so though.
Outside of meds that happen to have sleep-inducing side effects, I generally treat my insomnia by keeping a regular schedule, trying to be physically active during the day (working at summer camp is great for my sleep!), and taking a small dose of melatonin when I can’t sleep extra bad.
For all of that, I still have nights when I’m just lying awake sometimes. I try to read or something, but it sucks.
i’m not sure either, how to separate out of the effects of both autism and trauma on my sleeping cycle (which, if left on its own, is largely non-existent… there really isn’t much of a cycle.) i like melatonin too, and chamomile (i take it in a homeopathic form packaged as “calms forte.” calms also has magnesium in it, which can be helpful to sleep.)
i had to smile at the term, “discontinuation syndrome.” it sounds like withdrawal to me.
so good to hear the doctor is supportive and willing to self-educate. good also to hear that the process of weaning off is going well.
I don’t have much trouble sleeping though I often find myself in a semi-conscious dream state rather than true sleep at the beginning and end of my sleep cycle. Of course I’m rarely in bed more than 8 hours and I doubt that all of that is spent sleeping.
Thanks for your comments, everyone. I’ve tried taking melatonin, but I’m not sure how it worked, because I was weaning off the benzos too fast and not much can get in the way of the effects of THAT. I will try melatonin again when my system has returned to its own unique version of normal.
In other news, Zoloft discontinuation syndrome appears in be in full swing, although I can’t say it’s completely unpleasant. I’m mainly noticing a lot of sleepiness and some dizziness. I can still walk as long as I take care not to trip over my own feet. I’m also noticing that when I shift the position of my head, it sounds like sand is getting shaken back and forth inside my ears. Kinda cool now that I’ve gotten used to it, but I don’t really want to live with it indefinitely. So far, the withdrawal (I mean, the discontinuation syndrome) seems to be affecting my vestibular system and not much else.
I’m off all drugs right now. Mainly because I lost my health insurance 5 years ago. When I did I went through the most horrific experience of my life: Sudden withdrawal from atavan and other drugs. I sleep fairly well – I’m often exhausted because I suffer from liver disease. I suffer from some degree of insomnia still. I just can’t turn my mind off and I I can’t get out of that rat’s maze of anxiety. I also suffer from nightmares caused by PTSD. I still battle depression but I’m pretty functional. I know it sounds like a mess but I get real joy from being drug-free (except for a thyroid supplement and a low-dose of BP medication) I just won a free membership to the local gym and I’m looking forward to establishing a routine that should really help with all my health issues.
I’m so happy to hear you have a plan to live without drugs. I wish you all the best and hope you appreciate the “clean” feeling as much as I do! It’s fantastic even though not taking drugs has some challenges.
I do take various healthy and natural supplements: magnesium, sleepytime and tension tamer tea, 5-http mostly – and a lot of the time I forget about the supplements and still manage a deep, natural sleep. The nightmares are rare even.
I am marginalized in so many ways it’s almost unbelievable but I’m growing to appreciate it. I really like not being involved in the “health care” system. Now I have to sit and listen to family expound on their favorite topic: Their trials and tribulations with their health issues and I don’t have a lot to say. It feels good. I admit, I even feel a little superior. I am grateful for every day I enjoy a reasonable degree of health.
I don’t know how much my autism affects my sleep other than the high degree of stress it causes me. I have a plethora of emotional/mental health/other all layered and overlapping and have never really received any help or advice to it’s a web of symptoms that I can’t really untangle. The need for understanding and explanations is decreasing gradually and I try more and more to live in the moment without a need to understand myself. I’m also fading into a slightly disturbing numbness. I’m also rambling now so I’ll shut up.
Hi Rob,
It’s really inspiring to hear how great you feel being off the meds. I am contacting my doctor this week and asking her to prescribe the liquid version of Lorazepam so that I can get the taper started. The Zoloft withdrawal seems to be passing (or perhaps I’m just getting used to it, but no matter) and, as my body adjusts to fewer meds, I feel more and more overmedicated on the one remaining. So it will be good to start decreasing the dose–slowly, slowly. You’re fortunate that you could weather the sudden Lorazepam (Ativan) withdrawal, as awful as it was, without serious long-term consequences; two days of it was enough for me. In general, I’m not really talented at taking the slow boat to anywhere, but with the Lorazepam taper, I’ll gladly make an exception.