[Buddie]
Dear Dr:
The fact that, by some miracle, I don’t yet appear to have incurred some quite serious health complications from enduring weeks of total insomnia caused by the disastrous drug regimen you prescribed me and which I understood would improve the poor sleep that was one of the chief complaints I came to you with does not mitigate or undo the grievous damage I feel has been done to my mind, spirit, and body (in the form of constant fatigue, significant weight loss, chronic aging, among other things). The reality was that, by cutting back 50% on the .5 mg clonazepam to .25 mg and attempting to taper with 5-10 mgs of ambien, I went into withdrawal that prevented me from sleeping at all–night or day–except for an hour or two of utter obliviousness on the ambien from which I would awake with a near seizure-like jerk, as though from an episode of sleep apnea. Of course, the lexapro contributed to the withdrawal-induced insomnia, even though taken in the morning. The trazodone 50 mg and then 100 mg, plus clonazepam .5mg worked for maybe a night or two, which was also the case for the mirtazapine (at 15, then 7.5 mg) plus 1 mg clonazepam. I am now at 1.5 mg of clonazepam, from which it will be an extremely difficult and painful process to attempt to taper, and I am still barely sleeping from maybe 11:30 p.m. or midnight to 5 am.
It is deeply unfortunate–even tragic–but the fact is that I was in a much better situation before I walked into your office, because, at that time, I was sleeping from about 11:30-5 am on .5 mg clonazepam, feeling heavily sedated by it, until I had started the Lexapro, which cut it back to a 3 am wake time (couldn’t fall back to sleep in the second half of the night after starting Lexapro at night). I faced a choice back on Wednesday night, August 28, to go with your plan, or to stick with Dr. xxxxx until I saw her on Sept. 12th–and she had even said I could have just “taken the Lexapro or not taken it, as long as I stayed on the .5 mg clonazepam till I saw her”)–and, as it turns out, I made the wrong one. I also physically felt and appeared much, much healthier.
I am now in a deeply compromised state: I had to quit exercising overnight after starting your treatment, after spending the entire summer exercising nearly every day, and am only now just barely able to return to my lap-swimming (I’ve been to the pool 3 times this semester). I have lost significant muscle mass, and have chronic back pain, and pain near my kidneys and liver. But what I fear most–and about which I am seeking some measure of reassurance from you by writing to you–is what has happened to my cognition: it is absolutely clear to me–and I’m pretty sure it’s clear to many of my students, particularly in my lecture class (I am not teaching full-time, as you know, because once I went into withdrawal from the clonazepam and had wall-to-wall insomnia, I realized I could not possibly teach full-time, and called my supervisor the day before classes were to begin explaining my situation)–that my mind has been damaged, either from the period of clonazepam withdrawal, or the total, freakish and weeks-long insomnia, or perhaps whatever happened during the period in which I was knocked unconcsious for an hour or so by the ambien (perhaps oxygen deprivation to the brain through sleep apnea), or some combination of all these things. Is there any hope of ever recovering normal cognitive function after such a horrible, horrible episode? And don’t just point to this letter as an example of good cognitive function (as did Dr. xxxxx). I’m telling you: I feel as though I nearly have some form of dementia now. My eyes swim around, unable to focus, I can barely navigate a simple grocery store or Rite Aid, follow a grocery list, let alone read and comprehend the literature and poetry to which I’ve devoted my entire life. Even if I do somehow manage to get off the clonazepam, is there any hope of returning to my normal sense of self or identity? I know you would say it’s the depression, but the fact is, the last time I could think clearly was after I had tapered off the Seroquel, or really, before I ever began it. Here is my account of what has happened and why I am where I am now:
1. After two brief health scares (a benign testicular node, and a uti) in late May, in early June and almost overnight, I had an extended episode of what I can only regard as an anxiety attack that upped my blood pressure about twenty points to 140/80, caused parasthesia in my hands and feet, night sweats, and frequent wakings. I also had an episode of facial parasthesia, and saw penumbras around lights. Overnight, I lost nocturnal erections, and had some other SD issues. I was still on a normal sleep pattern at that point, except for the frequent wakings. I was very anxious about these symptoms, the medical residents at Washington Family Medicine (xxxxx) decided I was having a manic episode and put me on 200 mgs morning and night of Seroquel. I felt complete and nightmarish depersonalization and derealization on the medication, as well as intolerable somnolence and anhedonia. I knew I had to taper myself off–and did–experiencing a couple of nights of total rebound insomnia and eventually tapering down to 25 mgs at night, where I was only getting 2-3 hours of sleep because of the self-taper.
2. I finally got in to see Dr. xxxxx, explained what had happened, she wrote it up as a period of “brief psychosis.” I told her I was going to need something to help me sleep–I think she thought I meant because of anxiety, but I was actually talking about the fact that my self-taper off the Seroquel had destroyed my sleep, and she said to take .5 mg clonazepam at night to sleep, no more no less, 30 minutes before bedtime. I began doing this and the drug totally knocked me out, but, as had been my habit, I started reading about clonazepam, got scared by what I read, and tried to take myself off it a couple of times, sending myself into withdrawal each time, with symptoms of tinnitus, parasthesia, some derealization, cognitive fog, and, of course, insomnia, and eventually being forced to reinstate the medication. I didn’t even know about benzodiazepine withdrawal at that point, but that’s what was happening. Each time, my sleep worsened and the drug began to lose its efficacy (on top of whatever tolerance I may have been developing). Of course, the Lexapro had been recommended in the hospital, but I didn’t take until shortly before I saw you.
3. You know the rest of the story as I’ve recounted it. You can dispute my account of it, but I know what my subjective experience of all of this was. I firmly believe that, had I never taken the Seroquel, the anxiety episode or whatever it was would have resolved itself over a period of a couple of weeks and this nightmare would have already been over, rather than still continuing and, in fact, at its absolute worst point right now. Or, at least if I’d taken the clonazepam exactly as recommended, I would only have had to deal with one withdrawal, instead of several (along with the worsening my cognition each time) maybe had to up the dose, but it was only when I began cutting back or trying to discontinue the clonazepam that I basically lost the ability to sleep on my own–including naps. You may not accept it, but I believe that once you “turn down” the GABA receptors with the clonazepam, when you abruptly cease taking it–even at a low dosage, even if you’ve only taken it for a short while–they go into over-drive and that equals “no sleep,” among many other horrifying symptoms. You may not believe this to be possible pharmacologically-speaking, but that has been my subjective experience.
4. What do I possibly do now? My poor mind is so overwhelmed by this last round of medications that the sleep mechanism is now totally screwed up. I’m getting basically exactly as much sleep as the clonazepam chemically allows for. How do I turn this around? How do I ever return to a state of natural, restful and restorative sleep? I have to accept and live with the fact that this is my fault because of medication mismanagement, but surely there has to be some hope of fixing this mess somehow, right? It is my feeling that, until I am off the clonazepam and my GABA receptors have a chance to start healing, I can’t even begin to assess what has happened to my cognition completely, but how will I ever come off of it? And what will happen to my sleep in the meantime? You can think what you like, but my experience of this summer is that pyschiatric medication has, in essence, ruined my life and I’m desperately trying to reclaim it. I hope you are sleeping soundly and naturally when you receive this e-mail.
Sincerely,
Allen
p.s. For a similar account of medication-caused insomnia, see this. It’s eerily similar to my own experience, though this woman may actually be in even worse shape than I am, if such a thing were possible: http://www.non-benzodiazepines.org.uk/myoclonic.html
removal of doctor’s names
« Last Edit: October 31, 2013, 12:00:12 am by [Buddie] »
[Buddie]
Hello Andrew,
I completely understand the motivation for writing this letter, the doctor that I found late in my benzo experience recommended for me to do the same thing. Not only was I able to explain to the doctors what I, after much study and research, was able to determine happened to me during the two plus years I was on benzos but it was also very cathartic as well.
Our forum guidelines do not allow the naming of those involved in your medical care, because of this I am going to remove the names of the doctors in your post.
Whilst some of our members report negative experiences with doctors, psychiatrists, or the wider medical profession, and although we do not wish to outlaw comments about how members feel let down or mistreated in their personal medical care, you are not permitted to use this community as a platform to spread general anti-doctor or anti-psychiatry propaganda. Nor should you, unless you are posting a recommendation, name those involved in your healthcare. For more about this policy, please read our Anti-doctor, Anti-psychiatrist and Anti-medicine Comments notice.
[...]
[Buddie]
hello [...],
i have read the letter twice and i am so sorry this happened to you.
its very well written but i expect you might not even get a response from him.
It is not fair and they don’t seem to care or know how these medications can
destroy people’s lives.
i hope this changes soon and pray that you will get your life back.
take care
[...] 
[Buddie]
Hi [...]: What happened to you is a travesty – one which is played out far too often. It is extremely unlikely that you will get a response. The letter will simply get filed in your folder. The only thing that makes some people actually sit up and pay attention these days is the word “lawsuit”. So sad, but true. I hope the letter at least was cathartic for you.
[Buddie]
What did you expect a Dr to give you for insomnia..
[Buddie]
Quote from: [Buddie] on November 08, 2013, 10:55:39 pm
What did you expect a Dr to give you for insomnia..
Definitely not a chemistry which should not be prescribed longer than 3-4 weeks [...].
Advise to reduce stress and may be in some cases a change in the living circumstances.
after all a doctor should not be the salesman of the Pharma industry. he should take
his time and wisdom and do his own research about the pills he is handing out.
thats what i expect from a doctor.
[Buddie]
All the research I did on benzos said we shouldn’t take it for more than 2 weeks…
I used my time and wisdom and researched it myself, since it is my body and I do still own it at this point, regardless of what Obama is up to..
This is what I expect of myself, but I went against what I had learned, because I thought I had to because of some health problems I was having,,,,and here I am..
I can’t blame anyone but me
[Buddie]
If patients have to do their own research on medications , for which performance
are doctors getting paid ? for typing a prescription ? 
[Buddie]
I research everything..,
Cars, illnesses, meds, spirituality, foods, etc…
I don’t guess it would had been as easy for long term users that didn’t have the Internet before they started using the meds though..
[Buddie]