Quest for a good night’s sleep: Withdrawal notes

I am future-dating this post to protect my current privacy. I am sharing it with others just for informational purposes since maybe it’ll help another person.

After I was abused in the hospital in 2011 I started to have the worst insomnia I’d ever had. It started with sleeping three and a half hours a night, then only got worse and worse. At first I didn’t care too much because I didn’t know it would go on and on. After a few months I was very exhausted. I was nodding off constantly and going into mini-sleeps which caused me to drop things, become forgetful, and even bump into walls.

The entire time I lived in Uruguay I was constantly fighting off fatigue due to poor sleep, or no sleep. I searched around for anything at all that would knock me out. It was next to impossible to find anything, even sedating cough syrup. Pot is legal there but you had to know the right people, and I didn’t. I wanted a brick to fall on my head so that I would finally get knocked out. Sleep deprivation caused me to make a few bad decisions that affected my life, such as decisions about housing and finances. I have no clue how I managed during that very sleepy time. I knew I’d never be able to hold down a job if I was exhausted like that.

I had consulted a few Western docs (rarely, and with caution) and most all of them had dismissed my concerns as psychiatric. I stopped seeing Western docs realizing that they were not helping. My own shrink had accused me of mania many times, back in Massachusetts. I knew it wasn’t that. I consulted with trauma people and the consensus was that the insomnia would have resolved in time and was likely not caused by trauma (not that psych abuse (2011-2013) didn’t further it along!). Most of the trauma people with whom I was honest (they were never “therapists” and I did not have a clinical relationship with them) recommended pills as a short-term measure since the sleep deprivation was undoubtedly causing health concerns.

I called a few sleep clinics (again, cautiously). By now it was 2016. I found out that most will seek out a diagnosis of sleep apnea. I knew I did not have this. I was surprised that “drug damage” wasn’t even on the horizon for these sleep clinics. They don’t realize the drugs can do this to a person!  I didn’t want to admit I had ever been on psych drugs, for obvious reasons.

Upon my return to the USA I began to search for anything at all that would help me sleep. I finally resorted to buying drugs on the black market (I’m not sure why it’s called that).  From then on, I slept. Not well, but enough to function. Finally. Six hours a night is an amazing blessing!

As most of you readers know I have been holding down a job for a while now. Recently, I knew it was time to get off the not-so-legal drug I was depending on for sleep, that is, it’s legal, but not the way I  get it, that is, prescription-free. I’ve been taking a subclinical dose of Seroquel, but I’m not sure it’s really Seroquel, but of course it’s not the XR type which will stay in your system during the day. Either way it gave me that “knocked out” feeling roughly a half-hour after I took it.

One thing that definitely was keeping me awake after the trauma was self-talk while I was trying to sleep. In my mind, I wrote and re-wrote the story of the abuse, over and over. This was actually not anything abnormal or diseased, but the way writers often work through difficult events in their lives. We are always writing the story, which for many can interfere with sleep.

I had to stop the constant narration. I did not consult a therapist to do this. I did it myself. I don’t even think most therapists would have a clue if I told them. I told myself I would stop the narrator as soon as I hit the sack and snuggled up with Puzzle. I really do stop! I let the narrator, which is the writer in me, re-start when I awake. It helps me write and function. All I do is to put it to sleep at night. Still, I couldn’t sleep. At this point, I knew that this wasn’t psychological, but likely a physical issue, the result of having kidney disease and damage from being polydrugged with antipsychotics for decades.

What to do about the sleeping pill I was now taking? I tried multiple times to taper over the past few years and that wasn’t working for me. I was so scared I’d be stuck on the drug forever. I read the recommendations of the withdrawal community, but I disliked the blameful attitude they had toward those of us who were older or had been on massive quantities for far longer than most of them. I also disliked the pressure in that community to stay sick forever from drug damage, so I started looking elsewhere. I managed to reduce the dose by adding an antihistimine, but still I was not able to stop the small amount of illegal Seroquel I was still taking. I was so scared to end up in a sleep-deprived state again. I did not want to go back to that!

I finally found a sleep specialist (non-Western) who agreed to take me on. I didn’t have to give him medical records and I did not find him via a “referral” from a doctor. This is entirely outside of the medical system and of course, insurance is not applicable. I was honest with him about my history of irresponsible polypharmacy.

I worked with him for a few weeks. He developed a plan for me which I am mostly following. He stated that these were the three things causing insomnia. Kidney disease. Drug use (I had been on massive doses of antipsychotics for decades!), and thirdly, my belief that the drug damage was permanent.

Can I change all three? Yes. I have a good “lifestyle” and am allowing my kidneys to heal. The sleep specialist also recommended not consuming any animal products. This is not difficult for me since I hardly ever do. He said this would mean I had to stop ghee, too. Unfortunately I have a large tub of it lying around. This is okay. I might find someone to give it to. Any meat I have in the house I can give to Puzzle…who will be very thankful! The sleep specialist also told me I didn’t need many of the vitamins I’ve been taking. I stopped several but am still taking the ones I am sure are helping me. He recommended eating certain foods at night and to take certain herbs only in the morning, to exercise earlier in the day, and de-clutter my bedroom, which I use for storage and sleep. He didn’t recommend anything wacky or extreme.

As for the sleeping pills, I have a choice. I can go cold turkey or taper. It wasn’t hard to decide. I don’t want a long, slow taper even though the withdrawal community insists on it. I am going cold turkey. Tapering never worked for me in the past.

I decided that since everything else has healed, including anemia, this, too, will heal. I realized that believing in the permanence of drug damage or belief that it’ll drag out for years wasn’t helping me. I have abandoned that belief. Some people do suffer for years. Why did I have to include myself?  I do not have to be one of them. I also refuse to believe that going cold turkey will cause brain damage. You very well may suffer tremendously, but I do not believe any of the drug damage is caused by going cold turkey. I have heard that some people suffer so much that they are driven to suicide. I don’t believe I will be one of those people.

I decided to keep a journal of how it felt to get off the sleeping pills, and write it here for educational purposes only.

Day One

I did not take Seroquel at night. Sleep was difficult. I drifted in and out of a dozed state for about three hours, from midnight to 3am. I had to get up due to a headache that I knew was caused by sleep deprivation. I did not feel well upon waking but after a while I was okay. I felt awake enough until my usual tired time at work, 5pm. Then I went through a period of yawning, even while I was speaking on the phone. The customers didn’t realize this and since I was at a desk facing a wall, no one knew I was yawning. I was sure I could make it till the end of the shift but I knew it wasn’t going to be easy. I stood up at my desk when I was afraid I would nod off. I also was aware I was drifting into mini-sleeps. I ignored this and it passed.

Later at work, two of my coworkers started talking about psych meds. They are younger people. They excluded me from the conversation, likely because they figured I never took them. I look too healthy! Healthy? I must be a kook. What is that called? Health nut.

Day Two

At bedtime I took some antihistimines to help me sleep. In the past when I have tried to taper or stop the pills, the second night was so bad that I couldn’t go further. To my delight, my sleep was BETTER the second night! I slept from 11 to 3. My sleep was so much better quality that I did not wake up with a headache. Midday I noticed diarrhea. I told myself it was no big deal and I kept on doing what I was supposed to be doing.

During my work-at-home job I felt like I was falling asleep. Not that it matters. This is not talking on the phone, thank goodness. I use a chat client. Finally, though, I couldn’t take it any more. I logged out and went to lie down. Montezuma’s revenge was getting pretty bad. As I lay there I realized I needed to quit my job. I have been planning to do this. Why drag it out if I can do my work-at-home job for higher pay? Lately my supervisor has been treating me like I’m stupid. Apparently my coworkers feel about the same way. This has been the deciding factor, that is pushing me to quit sooner rather than later, increase my hours at my work-at-home position (where they treat me better!), and continue the training I am doing for a well-paying freelance position.

No, this isn’t some rash decision I’m making while in supposed “withdrawal.” I’ve been planning this out for a while. I had already told my other employer that I will be increasing my hours.

Later I discovered that the freelance WAH position is a scam. I am so, so tired of this. There was some value in the training but still…….Bummer.

Day 3

I slept a full six hours last night! I am delighted beyond belief. I didn’t sleep perfectly but it wasn’t the worst sleep in the world, either. I still have diarrhea but it is not super draining like it was yesterday. I used the herbs that the sleep expert recommended. I have a day off today and I am determined to make it a good one. I had been planning to get my blood tested but having the runs is going to throw off the levels. I am getting Puzzle’s hair cut! Woo hoo!

I think I spoke too soon about the WAH job. I think it is indeed possible to get it to work. The training was worth my time and it isn’t expensive. Overall it was far cheaper than starting my WAH job for the retailer.

Freelancing requires more “bookkeeping” type work than contract positions, that is, you have to keep a record of your earnings and expenses. However, I feel that I am ready to take this leap. Please contact me if you would like more information about what I am working on. This is certainly a possibility for psych survivors and others who have limited work history. You could also do this “under the table” if you’re willing to risk getting caught.

Day 4 Wednesday night into Thursday

I slept very badly last night. I got about one hour total. I awoke feeling exhausted.  The diarrhea got worse and worse. I made it through Puzzle’s haircut okay. I was awfully glad it was my day off. I chose not to go to the blood test because the diarrhea would throw my levels off.

Later in the day I felt nauseous.  I was really scared I would puke.  The feeling persisted even when I went to bed. Will I have to call in sick tomorrow?

Day 5 Thursday night into Friday

Again, I slept very badly. I got one hour at night and then, feeling totally discouraged, I wondered if I’d have to go back to Seroquel. Later in the early morning I got another hour of sleep. This helped immensely and I was good to go. I made it through my work-at-home job just fine. Work was okay, actually better than usual since my supervisor left early. I was all alone in my section of the office. I overheard the sups say that they lose their best workers because, as they put it, “They find better jobs.” I had to laugh. I was thinking that next Friday would be my last day, but I might extend it another week. I had to stay late due to a lengthy call I received just before I was set to leave.

Day 6 Friday night into Saturday

Last night I went to bed as soon as I could after I got home. Likely I hit the sack shortly after 11 and slept till 5:15 when the alarm rang. I woke up one time in the night which is to be expected and doesn’t bother me.

I am noticing the sedating effect of pistachios and will be sure to have a supply of them on hand all the time. Almonds aren’t quite as sedating but they seem to help, too. I used a bunch of herbs to help me sleep, Vitamin C, and antihistimines. Seems to work just fine. I would like to stop the antihistimines ASAP because it’s not good to stay on them long term.

Today I work early  hours, which was the reason for the alarm. I don’t mind working today since I get off mid-afternoon. I hope I have minimal interactions with the supervisors today. I do not like when they treat me like I am stupid.

Later: I was so happy that my supervisor had a day off. Saturdays aren’t too bad. I felt sleepy for only part of the shift, nothing to be concerned about too much. The diarrhea is finally gone. Other than sleep irregularities and this brief diarrhea I am not feeling any other effects of going cold turkey off of Seroquel. I found out I won’t get the bonus I am due until the 21st. This means I can’t quit next week. Ah, the week after! I am doing my work-at-home job in a bit. I don’t expect to have problems staying awake.

Day 7 Saturday night into Sunday

I can’t believe this is the seventh day. I barely slept last night and I’m miserably exhausted. I fear I will have to miss more work. I don’t know if I should call in sick for the first couple of hours of my WAH job.  Sundays I make a lot of money. This “withdrawal” is causing me to skip work way too much and that means loss of money.

I feel cheated in a way. I suspect the sleep person was totally wrong when he told me that withdrawal cold turkey would just take a week of suffering, and then suddenly, poof! I would sleep just fine. I don’t think so. I think this is going to go on and on.

Last night I called Amazon to report a scam sleep aid sold on there for an insane price.  It took a while for me to explain to the representative why the sleep aid was a scam. I told her that it was all sugar and, as far as I could tell, couldn’t possibly induce sleep. There were reviews on it and I explained to her how I had gone through these reviews and noted that most showed signs of being paid reviewers. Not one of them had actually tested the product or specified how it helped. Several reviewers had not reviewed any other products.

I wish the representative had not dragged this conversation out. I was surprised because in the CSR business, call length is vital. Maybe she was new and didn’t realize this. Either way, she had to contact her supervisor about what to do. I was not  on hold very long. She said they will investigate and get back to me. The investigation may lead to the seller and product being removed from Amazon. I told this was why I was calling, because I wanted to protect others from being ripped off.

I was so sleep-deprived at that point that I burst out crying. This person, who likely lives far away, maybe in the Philippines, continued to drag out this conversation further. I wanted to get off the phone. She even said she would pray for me. I didn’t want that, I only wanted the product removed. I informed her that there are sites out there soliciting for fake Amazon reviews. I told her I had found these sites myself, and that I was aware that purchasing reviews was against Amazon policies.

Note: If you’re desperate enough for work, and considering writing fake reviews for money, think twice. Whoever is hiring you is dishonest. Do you really want to support a company with dishonest ethics? If they’re dishonest in the marketplace, they are certainly deceiving you, too.

I can’t believe the representative tried recommending sleep remedies to me, but that didn’t last long. I told her that lavender oil reeks and keeps me awake. She started to get personal, recommending various ways to get to sleep, including reflexology, which sounds scammy already. Again, I know this is not appropriate! I sensed this and got off the phone as soon as I could.

I was crying out of utter frustration. I had trusted this sleep specialist and now I am doubting.  Insomnia causes desperation. You get to a point where you will do anything, legal or not, to get to sleep. I was thinking of resorting to booze even. But wait! Resorting to booze makes no sense as knocking myself out with as much booze as I can stomach is likely more destructive than taking a tiny dose of Seroquel.

I’m considering not staying miserable any longer and going back to Seroquel. I emailed the sleep specialist and asked. I am wondering what he will say. I don’t want sleep to become such an issue all over again that every night is Russian Roulette. I don’t want to be living in constant fear of having to call in sick at work, or constant worry that I am not going to survive the shift due to fatigue.

I am wondering also if my shift from self-reliance to temporary reliance and guidance of this specialist has been harmful to me. I suspect that in some ways, I lost my sense of autonomy, although in a minor way. When he told me that cold turkey effects would only last a week I knew this was incorrect, but I went along with it because of the promises he made. Why did I do that? Likely wishful thinking. While I do own my decisions, I started to not own them as soon as I forced myself to believe that a false statement, “It will only take a week,” was true.

Every time we concede against our better judgement, even a little, and act in a way that defies our inner sense of morals or inner common sense, we are compromising out human rights, autonomy, responsibility, and our dignity…in fact, we are denying our own worthiness.

Later: I received an email back from the sleep expert. I asked him where he got his evidence that Seroquel withdrawal lasts only a week. Guess where he got it? From the drug label! I informed him that we cannot believe this propaganda, as it is surely based in bias and on limited statistical data. Most of these drug label blurbs were based on data collected from short-term trials (because they’re in a hurry to get the drug on the market!). They do not even know what happens when you are on these drugs for decades…or maybe they just don’t want the public to know. Or maybe they can’t even collect the data on a population that has mostly died already.

Day 8 Sunday night into Monday

I slept okay last night. I went to bed at 9 and woke up and 3, and then, lay in bed thinking for a while until I got up at 4. This is not a bad schedule and it’s not disordered. It is in fact closer to my most comfortable schedule than is going to bed at 11:30 as I have been forced to do because of work.

I am fairly sure I slept okay last night and I hope I am not tired at work. Again. Most of us do nod off so I am not alone. It is tedious and repetitive. The best thing any of us can do is to amuse ourselves in some way, either by conversing when we can or by doing some kind of side-thing as I do. I secretly read at my desk. I love doing it! It’s not allowed but I don’t think it’s that bad of a crime so long as 1) you don’t make it obvious, and 2) you snap to attention as soon as that phone rings.

I made the decision to keep going with the Cold Turkey withdrawal. This hasn’t been that bad. The diarrhea is gone now. That was what kept me home from work one day, but only one day. I missed about two hours of my home job, also. I worked it out with the sleep expert. He has made good suggestions and I think his program might help others also.

A lot of these decisions were mine, though, not his. You have to understand this if you’re going to see a natural doctor. You ultimately are the one in charge. A decent naturopath will make some statement in the paperwork you get to that effect. They have to.

Why would a medical doctor need malpractice insurance? The very thought of it makes me realized that the whole concept is based on the idea that your doctor is the one responsible. This is due to the coercive (and sometimes, forceful) nature of our medical system, that forces us into making them responsible. What if we took responsibility for ourselves?

A decent practitioner will tell you, “We make no claims that we cure anything.” Why? Because you cure you. You decide, you act, you use the naturopath as a guide or teacher. It all makes a lot of sense to me now that i have left the system far behind.

Day 9: Monday night into Tuesday

I slept a whopping 7-1/2 hours last night.  I awoke a little groggy but that did not last more than a few minutes. I feel okay. Kinda thinking of a total career makeover. What if I became a teacher? I suppose it would matter what kind of teacher, wouldn’t it? And it would matter what the school system was like. Last night it felt like the last straw when my supervisor chastised me for gulping down some soda which took up all of five seconds, saying I’d better get back to work. Huh? Five seconds and she’s already bitching at me…..

Thinking of speaking to HR about this and trying to strike a deal with them. I can’t work late anymore. 11:30pm is not my natural bedtime.  Reduction in hours and a pay raise. The latter I’m not likely to get, but I might try. Stop the inconsistent enforcement of rules. If they won’t enforce them consistently (favoritism) then the rules need to go. Or I go.

Or…Maybe I just need to do activism full-time.

At work I had the opportunity to voice my concerns. I am having second thoughts about leaving my job now. I spoke with upper management about the supervisor, and the manager said that there have been many similar complaints. He said he would speak to the supervisor. This is the second time I’ve complained about a sup since I started working there. Both times they took me seriously.  In both instances, I was the most outspoken about the inconsistencies, the one who spoke on behalf of others. They knew this, too.

In other situations, other places, where I was seen as a diagnosee (back in Massachusetts, that is), I wasn’t taken seriously at all, even called psychotic. This is a welcome change. There are people who work there who are known to be mental patients. They even talk about their diagnoses the same way you might say, “I’m proud to be Irish” or boasting that you were admitted to Harvard.

As for changing my hours, they can’t do it yet but it’s a possibility in the future. I am not sure how long I will wait. Staying up this late isn’t good for me.

Later, at work, I took a Spanish call, which I do occasionally. My supervisor called me over and told me I can’t do that until I take the Spanish test and pass it. The advantage of doing this would be that my pay would be higher. I overheard them saying that they believed I would pass the test. They’ve heard me take Spanish calls before.

I am valued at my workplace, actually valued more than I realized. I left realizing I need to reconsider whether I quit or not.

Day 10: Tuesday night to Wednesday

Last night I had a very bad stomachache. It kept me up and even after it subsided I still couldn’t sleep. At 3am I decided I do not want to miss any more work due to lack of sleep. I took an entire 50mg Seroquel and slept till 9am.

I have to sacrifice something. I don’t know what it will be. I’m going to burn out if I don’t. I cannot miss any more work. I think I will have to miss out on Toastmasters tomorrow. The commute is exhausting and time-consuming. I know I enjoy the bus ride and often get a lot done on the bus (reading and writing). Thursdays are my only day off, though, and I need time to go grocery shopping and all those necessary chores that get crammed into my one and only my day off.

Day 11: Wednesday night into Thursday

I slept about 7-1/2 hours last night without Seroquel and feel fine. No stomachache and nothing hurting or bothering me.

Day 12: Thursday night into Friday

I went to bed at 8pm and got up at 3. I would love to keep those hours all the time. I’m getting the hang of this. Slowly. It is really important to be careful about what you eat before bed and during the hours leading up to bedtime. The sleep person said to stop the magnesium, but I am finding that it does help with sleep by balancing out electrolytes. When I skip the magnesium I do not sleep as well.

I am likely to go get another blood test soon. I do this only for comparison. It’s encouraging to see the numbers get closer and closer to normal. Whatever the hell that is.

Day 13, Friday night to Saturday

I slept about two hours last night and had to show up at work at 8am. I struggled all day to stay awake. I nodded off constantly, even right in the middle of conversations with customers. It felt like torture trying to sit there when my body was screaming for sleep. Finally, I approached the supervisor on duty and he let me go home early. I managed to catch the bus, came home and collapsed into bed. I missed two hours of my home job, too.

I finally concluded that due to lost wages and wasted money on herbs that do not have any effect on me, this was likely a failed experiment. I have lost at least $200 in wages and about $150 on the herbs, and after all that, the insomnia is not solved at all.

Day 14, Saturday night into Sunday

Interestingly, I went to sleep without Seroquel last night and slept fine. I have concluded that I shouldn’t rely on “help” people, even alternative ones. This is why:

As soon as you become reliant on the Help profession, you sacrifice your own wisdom for theirs. I notice that I sacrificed common sense and forced myself to believe him, when in fact what was happening was that I was doing things I knew were illogical.

I have no reason to believe that animal products cause insomnia, and I do not believe that switching to an all veggie diet did anything to help me sleep. I also purchased all those herbs that I kinda knew wouldn’t work. I suspended my disbelief and forced myself to go against logic and common sense. They never worked before. Why would anything change?

A few things have changed, though. Instead of night-after-night insomnia, I now have insomnia about 50 to 75% of nights. This, of course, isn’t good for productivity. I don’t want to lose my job(s). Being frustrated, angry, or upset over insomnia is making things ten times worse.

Since I started with the sleep expert it has felt like every night at bedtime I have to arm myself with war gear. I was taking about six herbs, a few vitamins, eating pistachios, and taking antihistimines. Of these supposed “cures” I’d say the antihistimines and pistachios work the best. As for the herbal potions, they contain a small amount of alcohol. I tried substituting wine one night and found that it was the alcohol in the herbal potions that was sleep-inducing, not the herbs. The alcohol, mixed with antihistimines, was making me sleepy! Sadly, all those useless potions were expensive.  A huge waste.

Total loss: about 200 in wages, about 150 on products, and about 100 on the sleep expert. Increased frustration and anger over all this.

It is time to end my ordeal with the sleep expert and try something else. People keep telling me they will get me marijuana but this has never panned out. I wish I knew where or how to purchase the stuff. Meanwhile, I think I will go back to Seroquel, taking it only if I really need it, rather than suffer through nodding off during the day and possibly losing my job.

I am also going to try a totally different technique. I am hoping this isn’t yet one more waste of money.

Two days later: Interestingly, though I have promised myself I will take Seroquel rather than go through more sleepless nights, I have not taken any. I have not needed it. I am sleeping okay.

This ordeal has taught me that I am actually dissatisfied with my jobs. Doing customer service doesn’t align with my life purpose. I feel like there’s so little time…life is so precious…why am I wasting it like this doing something that isn’t helping to make the world a better place?

Maybe I should take time off of work, live on my savings, and spend the time writing. Writing doesn’t make money unless you write for shit companies promoting their products. That is like prostitution, in fact, doing what I do now is a form of prostitution. I’m sacrificing my ideals, my talents and abilities, my life and my time on earth for the sake of a company I do not care about. Likely, most working people are being prostitutes and would also rather be elsewhere. (This is worthy of a separate blog entry.)

I would rather be teaching at a university or doing something a bit more meaningful. Even trying to do something like that, though, I need to start small and build up. Maybe I should design the class I was planning and propose it to the junior college. First, though, I want to get my book done. It’ll make me look more credible.

Maybe I need to quit one of my jobs and then, work limited hours just to have a small income, rely somewhat on savings and spend more time writing.

However, back to sleeping, and what will help induce sleep if you have been damaged by antipsychotic drugs:

Regular exercise

To consume at bedtime:
Melatonin, in liquid form.
Pistachios, unsalted, about a dozen
Very small quantity of booze
Dramamine, double dose
Doxylamine, one of the ingredients of NyQuil, pill form, double dose

If you can’t sleep, DO NOT get out of bed! This is not good advice, even though many sleep experts will tell you this. I do not think that getting up will help you if your insomnia is severe. Even if you can’t sleep, you are benefiting from lying in bed resting. Getting up will result in losing that precious rest and will obliterate and chance of future sleep. Even ten minutes of sleep is going to help you.  Getting up will cause your body to become in a more wakeful state, and actually, you don’t want that in the middle of the night. Give yourself the chance. Stay in bed.

Many meds for blood pressure, depression, etc can cause insomnia, as well as many other pharmaceuticals.

I plan to taper down off the antihistimines eventually.

Feedback and comments welcome!