To Worry (or Not) about Medicines given to Help You Sleep
I was diagnosed with paranoid schizophrenia in December 2010. Following the diagnosis I was put on anti-psychotics and I regularly visited my psychiatrist for the same. While this forms the backdrop of my longstanding relationship with psychiatry, this story is about my difficulty with a different struggle, that of sleep. It was in July 2019, nearly 9 years after I had been on psychiatric medication, that I started facing problems with sleep. Before this, I never had any difficulties with sleep. At the time, I just could not fall asleep! I would toss around in bed till 3:00 am in the morning. I had to leave home early for my job and the deprivation of sleep made it difficult to work. I visited the psychiatrist and told him about my sleep problems. He did not diagnose me with anything in particular. He did not ask me anything about my difficulties with sleep. He just wrote me a prescription for ZOLFRESH 5mg and I started taking them. When I started taking the medicines, I had no idea about sleep medications and their side effects. I just started taking them as I had done with my medication before. My psychiatrist did not bother to warn me about the long term effects of these medicines.
After a few months, I realized that I was still not sleeping well. I was taking the medicines but I still could not sleep. With the drugs I went to bed at around 10:30pm and I would wake at around 3:00am in the morning. So, I went back and told my psychiatrist about it. Once again, he did not ask me any questions, he just increased my dosage. Now I was on a higher dose of ZOLFRESH (from 5mg to 10mg). After a few more months, I was still not sleeping well and I told my psychiatrist again, and once again there was no discussion about the problem. He just added a new drug. So, now I was on LORAZEPAM 2mg and ZOLFRESH 10mg. My sleep problems remained the same, with the only difference that I was not worrying about them. Then came the Covid 19 pandemic followed by a lockdown. I would occasionally consult with my psychiatrist and I continued the medication without worrying about anything. During the lock down I did not have to wake up early for my job, so I did not worry about my sleep problems. The lock down opened and I went back to work .
This way time passed, but I did not notice much of a change in my sleep pattern. After nearly 3 years, I started to feel that though I am taking sleep drugs, I could not fall asleep. Sometimes, I used to have bouts of insomnia, where I would not sleep for 1-2 days in a row. Each morning my head would be very heavy and I needed 3-4 cigarettes to overcome the heaviness. That’s when I started to study the medicines I was prescribed (with the help of the internet of course). Through my search I found out that I was being prescribed a class of drugs which are called Benzodiazepines and Zolpidem, also referred to as z-drugs.(Benzodiazepines are a class of depressant drugs used to treat anxiety, insomnia, seizures etc. The primary effect of benzodiazepines is inducing sedation (tranquillity) or hypnosis (sleep). When taken for a long period they are habit forming. Z-drugs are prescription medications used to treat insomnia by slowing brain activity. They are also habit forming and cause dependence when taken for a long period of time. They can also be dangerous if combined with alcohol or other drugs.) Learning about these drugs made me anxious. In my anxiety, I consulted the marketing team of the drug manufacturers in India and they, like the doctor, told me that the drugs do not have any side effects and they do not cause any addiction and dependency. Dissatisfied with their responses I consulted my brother, who happens to be a marketing representative. He too reassured me telling me I could continue taking the drugs. But somehow, I knew that something was wrong, what else could explain the bouts of insomnia, where I could not sleep for 1-2 days in a row.
“They know how to Prescribe But they don’t know how to Stop Them”
After each of these bouts (and finding out more), I visited my psychiatrist and I asked him to stop my sleep drugs immediately. To pacify me he wrote in my prescription “the patient wants his sleep drugs to be stopped” and said we would start from the next time. After a few days, I called him again, he finally told me the medicines cannot be stopped abruptly, they need to be tapered down. By this time, I was on a very high dosage of sleep medications. I was taking two drugs for sleep and one of them was given for anxiety. I had no anxiety problems before this.
I further asked my psychiatrist to stop my sleep drugs, but he did not oblige. And in the process his reasoning became very childish. Sometimes, he would say, “why don’t you stop them on your own?”, He would then say “just reduce them slowly in small steps. It is easy!”, I said, “I do not know how to stop them!” All my requests to him to stop the sleep medications were neglected, he tried to divert attention from the issue. Every now and then, he would come up with something very childish and postpone stopping them.
Sometimes, he would say “Learn from this fellow patient, he has reduced them.” At others “It is summer time Amit! And you would face difficulties in sleeping during summers, so let us wait till winter.” And yet another time “I am giving you medicine from such a big American company and you are asking me to stop it. It is okay, keep taking it.”
I was insistent about stopping the medication. I just wanted them to stop and to be able to sleep naturally. 6 months of this back and forth negotiation had passed, and I continued to struggle. Looking back now I think he did not know how to stop them.
He knew that they needed to be tapered down, but he did not know how to do it. In India people never question their psychiatrist. They simply keep following them, as if they are infallible and God-like figures.
In frustration, I visited other psychiatrists to help me stop the sleep medications.
If I remember correctly, I visited 7 different psychiatrists and none of them knew how to help me stop the sleep drugs. All of them knew how to prescribe, but they did not know how to stop them. Some of them repeated, “it is just a pill, keep taking it!”
One said, “I will tell you about a new sleep drug Quetiapine and it does not have any addictive and sleep dependency nature. You can take it.” The other one would say, “it cannot be stopped. Get hospitalized and I can figure out why you are not able to sleep despite taking such a high dose.” If I used the Insomnia word in front of him, he would say, “speak in Hindi! You think you know a lot about these drugs.” One of them gave me a different class of drug (Antipsychotics), which causes sedation and he said “you can stop your old sleep drugs now without any tapering and you can easily fall asleep.” I remember, after using that drug I slept for more than 12 hours and I woke up at 2 o’clock in the afternoon. Thinking this effect would fade out over time, I continued to take this pill for one month and I still could not sleep well at night. So, I stopped taking them.
My psychiatrist in the meantime to make me happy suddenly stopped my LORAZEPAM 2.0 mg. This gave me terrible anxiety. And I started to have suicidal thoughts.
I started to think about death very often. I would constantly pace to and fro on my roof top and think about death. With the sudden emergence of suicidal thoughts I immediately consulted him and the medicine was brought back to the original dosage. With the return of the drug into my system, the suicidal thoughts stopped and I stopped thinking about death.
Finding my way Back to Medication Free Sleep
I was struggling with my sleep and as a result I continued to face problems at work. Over time, my difficulties became too much to bear and I decided to resign from my job. I thought, I must figure out on my own how to stop these drugs and sleep naturally.
So, in July 2022, I resigned from my job and started my healing journey. I informed myself about the sleep drugs I was taking and I joined an online peer support community called benzobuddies (Please check the website https://www.benzobuddies.org for the same).
This peer support community was wonderful! They had people from all over the world, who were trying to stop benzodiazepines and z-drugs. Being part of this group helped me tremendously. For the first time, I got to find out about insomnia, withdrawal symptoms, tapering and the Ashton Manual.
After being part of the peer support community, I decided to look for a psychiatrist trained at the National Institution for Mental Health and Neurological Sciences (NIMHANS), one of the premier institutes for mental health in India. I came across someone based in Bangalore, he was an expensive psychiatrist, but I decided to go ahead and try it out.
When I consulted him he said “there is some chemical imbalance in your brain and that is why you are not sleeping well.” He further asked me to continue with the medication and that there is no problem. So, I requested him to connect me with another psychiatrist trained at NIMHANS in my city Indore.
The new psychiatrist was a young man and assured me that he could help me out. Like the others, he too wondered why I was not able to sleep, but he agreed to taper the drugs. After 2 meetings, he started my treatment and it took me around 6 months to come off sleep drugs. He further noted that “I was simply taking too many drugs for my problems and they needed further optimisation.” He switched the medicines from a shorter half-life benzodiazepine to a longer half-life benzodiazepine and then used an anti-psychotic with sedation properties to stop my sleep drugs. (I gave him a copy of ASHTON MANUAL too, but he did not understand it. He did not have any guidelines about safely deprescribing Benzodiazepines and Z-Drugs.) We just tapered the medicines linearly, and luckily, I did not face severe withdrawal symptoms.
Finally in 6 months, I came off all the sleep drugs. At times, I used my shaving blade to cut the pills, and sometimes used water solution of the drug, to taper them to lower doses. (My drugs were soluble in water and so that was possible.) This psychiatrist really helped me and it took me nearly 2 years to successfully taper the sleep drugs and come off them completely. It was by July of 2023, I was completely free from all sleep drugs and I started sleeping naturally.
I was still facing sleep problems but I was sleeping naturally for 6-7 hours a night, sleeping late due to insomnia and waking up late too. I had no worries about leaving for a job early, so I could manage this difficulty.
After this episode was over, frustrated by my experience with psychiatrists I contacted the dean of a local prestigious government medical college and complained about all the 7 psychiatrists who did not know how to safely stop sleep drugs but continued to promote taking them.
This experience made me aware that there are no mechanisms for feedback and accountability of medical professionals.
They keep doing whatever they want and they have full freedom for the same. Besides, they are very expensive and a poor man cannot afford their expertise.
After this, I decided to do further online research about how to sleep naturally without taking any sleep drugs. This was when I got to know about Cognitive Behaviour Techniques for Insomnia, also known as CBT-I. Taking to the internet again, I searched for specialists in CBT- I in India, but I could not find anyone. In search of a way forward, I looked on for help online and I found a wonderful self-help book on CBT for Insomnia titled “Overcoming Insomnia: A Self-Help Guide Using Cognitive Behavioral Techniques” by Colin A. Espie. I purchased the book and followed the 6-weeks program diligently. To my surprise, the program improved my sleep tremendously. While following the CBT course through the book, I came to understand the real reason for my sleep problems; it was napping in the afternoon. I was sleeping around 3-4 hours a day in the afternoon, both in the office and at home on weekends*. A routine habit which was overlooked by all who I approached for the problem. Everything began to make sense, there was a reason to my difficulty sleeping at night. The book brought forth knowledge on: sleep hygiene practices, wind-down routines, progressive muscle relaxation and Thought Blocking techniques. I had to make only a few life-style changes.
Today, I am sleeping 6-7 hours every night without any sleep medication. I reduced my consumption of tea. I practice a proper wind-down routine daily, I practice progressive muscle relaxation for 15 minutes and I do thought blocking. I go to bed at the same time (11:00 pm) and I wake up at the same time (7:00 am), and I do not nap in the afternoon. I still face some problems due to usage of sleep drugs, but on most nights, I sleep well. It has been 15 months now!
So, this is the story of my insomnia. My experience has led to many frustrations and realisations. Had my first psychiatrist known how to taper my sleep drugs, I would not have gone through such a tortuous path. Had they known about CBT and shared that with me I would have gone for it. Had there been any CBT specialist therapist in my city, it would have made my life much less difficult.
The realisation that accompany these, are of a medical system that is full of very serious gaps in practice. Practices where there are violations of human rights, which go unrecognised.
It has made me wonder about the profession of doctor, which seems to have become a business. The lack of a feedback system about these practices makes it all the more debilitating. There don’t seem to be any evaluation or accountability measures towards those of us who are prescribed medications. There are so many psychologists, but there don’t seem to be any good therapists in India. Where people need therapy, they are prescribed medicines. The condition is very bad in villages, where the medicines are not easily available and people stop psychiatric drugs abruptly, in turn facing severe health problems. I am a living example to this testimony.
On the other hand, while going through this entire journey, I found out about practices which the psychiatrists did not know about. I came to know about Sleep Onset Insomnia1, Tapering2, Withdrawal Symptoms, Ashton Manual and CBT. Finally, the good news is that I got my sleep drugs successfully tapered and removed from my system. I wish the entire journey would have been easier for me. At the very least, I would not have had to resign from my job. As a consequence I have been unemployed for 3yrs.
*Editor’s note: Excessive sleep/napping is a common side effect of psychotropic drugs, and giving all drug information to the patient is essential for them to navigate their care.
Sleep onset insomnia happens when a person does not fall asleep early. Falling asleep is a struggle for him. A normal person falls asleep within 15 minutes of going to bed.
- Sleep onset insomnia happens when a person does not fall asleep early. Falling asleep is a struggle for him. A normal person falls asleep within 15 minutes of going to bed. ↩︎
- Tapering means gradually reducing the drugs in very small steps. One should never stop psychiatric medications suddenly and abruptly. If you stop cold turkey, you will get withdrawal symptoms. ↩︎
Amit Dixit
Amit is an engineer by profession. He has been diagnosed with schizophrenia since 2010. He is currently taking anti-psychotics for the same. However, he thinks that he needs therapy and not medications. Because of the severe side effects of psychiatric drugs, he is currently in the process of tapering them and with a desire to live a medication free life. He loves Yoga, meditation, reading, swimming, and listening to music. He also loves walking and blogging.