If I had cancer, or any other serious illness, it would be obvious I need help, and often a great deal of it, maybe for a long time. But psychiatric drug withdrawal syndrome is not understood by most doctors, and there is very little information to help us, or help loved ones understand what’s happening. If you are going through this, or are supporting someone who is, what you are about to read will validate what you are experiencing, or help you to understand what is happening to your friend or family member. It will also offer some advice about what might be helpful, and what isn’t.
Withdrawal syndrome is a real medical crisis. Depending of the kind of medication a person was taking, and for how long, the symptoms associated with healing can be a little different. Some of the medications involved are benzodiazepines, including Valium Xanax, Ativan, Klonopin and their generic versions etc. Antidepressants, of which there are many, including Paxil, Prozac, Effexor, Lexapro and their many generic versions. Other psychiatric medications which can have withdrawal syndromes are anti-psychotics like Seroquel, Zyprexa, Abilify and their many generics. Mood stabilizers like Lithium and Lamictal are the same, in fact any medication which alters the way the brain normally functions, can cause these effects when you stop taking them. In some cases, the recovery process can last a long time as the brain and nervous system slowly revert to their original way of functioning, reversing the changes made by daily ingestion of a neuroactive substance. The changes these medications cause, in a healthy brain are starting to be understood as a kind of functional ‘brain damage’, which can take a long time to recover from, often needing months and in some cases years.
People in the acute stages of withdrawal from some of these medications can die from seizures, dehydration, cardiac complications or suicide, and the crisis isn’t over until full recovery has taken place. Sometimes people kill themselves many months after the cessation of their medication. The level of suffering, and its constant nature can be too much for some people to endure. During my time, working within the online withdrawal community, I have known many people who have taken their own lives, to end their unbearable suffering. Please take this illness very seriously.
Regular use of any psychiatric medication, especially when taken for longer than a few weeks, will cause the brain to change as it adapts to the unnatural chemical environment caused by the drug. These changes may take a long time to reverse once the drug is stopped. Of course, much of this depends on the type of drug/s taken, the length of treatment, individual genetics, age, health and how the drug was stopped. Tapering slowly over a long period of time tends to reduce the severity of any withdrawal symptoms and reduces the risk of long term withdrawal effects, but this is not guaranteed. Anecdotal evidence shows that in people who have problems stopping a psychiatric drug, the average recovery period is 6 to 18 months. But many people take 36-42 months, some longer. For me personally, I’m fairly close to being recovered. But my recovery process has taken more than 4 years after I stopped all medication. I started taking antidepressants for moderate, situational anxiety, but ended up taking them for 13 years, because the withdrawal symptoms were too intense when I tried to stop. When I finally did manage to stop taking my daily 5mg dose of Lexapro, by tapering over 2 months, I still had a lot of symptoms, but didn’t know about withdrawal, so I took xanax, ADHD stimulant medication and then more antidepressants to try and get relief from the symptoms. I was getting sicker with each new drug, until I stopped them all. But then it took about 3 years before I really started to notice some consistent improvement in my condition.
Healing from the damage caused by psychiatric medication is unlike any other form of recovery. The process is not linear, where symptoms abate in a consistent fashion, this is different from any other recovery process you may have known.
New symptoms can occur at any time during the healing process. A person can feel better and be in a “window”, thinking they are recovered, only to be hit again with horrific new or old symptoms (a wave). The erratic nature of this healing process causes its own anxiety issues. We feel better and have hope, only to be thrown back into the nightmare which is not yet over.
Other people need to understand this, and have compassion, patience and understanding to help a loved one who is going through this difficult recovery process.
Doctors know very little about this syndrome, that’s if they are even aware it exists. They often tell patients that their underlying illness is resurfacing, or that the tapering or cessation of the drug has unmasked a new mental illness.
But even people who were given these medications for pain, insomnia, stress, grief or other non-psychiatric related symptoms often suffer extreme anxiety, panic attacks or new symptoms when the treatment ends. People who have never felt anxiety, depression or emotional difficulties in their lives, will often develop these symptoms when trying to stop taking any psychiatric medication, regardless of the reason it was prescribed.
Some people develop withdrawal psychosis that resembles schizophrenia and will be institutionalized. (The sad fact is most people seeking help for extreme withdrawal symptoms will be given more psychiatric medication, which is detrimental to the healing process.)
One of the most common symptoms is fear, often described as terror when symptoms are at their most extreme. This fear is very much physical in nature, originating from a malfunctioning ‘fight/flight’ system. This fear is not cognitive, but can trigger a cascade of anxious thoughts to follow. You or your loved one may become afraid of common objects, people or places, or may feel anxious or frightened for no reason. Constant reassurance is important. We need to be reminded we will heal and that the fear will eventually end.
Insomnia and sleep difficulties are common, it can take a while before normal sleep patterns are re-established. Inability to fall asleep and stay asleep are common symptoms. The quality of sleep can also be disrupted, meaning you will wake in the morning feeling like you didn’t sleep at all. This combination of intense anxiety, combined with an inability to get a good night sleep leads to the expression ‘wired and tired’, the body and mind are exhausted, but the brain has lost the ability to shut down properly, so getting adequate sleep is not possible. Quality sleep is needed for any kind of healing, the brain especially needs sleep to enable it to function properly and do its repair work. Resting quietly in a darkened room can be helpful, if sleep is not yet possible. The ability to sleep will return over time.
Akathisia is another very serious and excruciating symptom which can be experienced as part of the withdrawal syndrome. It’s sometimes described medically as a movement disorder, but the subjective reality is a state of intense inner restlessness and torment which is impossible to escape from. Nothing relieves the torturous sensations and sometimes, suicide seems to be the only solution. With time, this symptom usually decreases and disappears, but unfortunately, some people are not able to endure this long enough to survive. This symptom is thought to be the leading cause of suicide in people adversely effected by psychiatric medications. Akathisia is most commonly recognized as a side effect of anti-psychotic or neuroleptic medications, but many people report experiencing it when they start taking other psychiatric medications and when stopping them.
Withdrawal causes mood swings. We can go from paranoid, anxious, enraged, hopeless, euphoric, terrorized, all within minutes or hours. It is exhausting for us and those around us. These mood swings can look like bi-polar disorder, but they are part of the recovery process, and usually disappear when the brain heals. Many doctors are uneducated about this and are eager to diagnose a new mental illness so they can offer another medication in their misguided attempts to help. But ingesting more psychiatric drugs means continuing the harm, and a delay of the recovery process.
The physical sensations of withdrawal can be very frightening. From tingles to crushing pain, burning sensations to twitches, shaking to repetitive movements, our bodies betray us over and over every day. Symptoms are not constant and often cycle around. Sometimes they disappear, only to come roaring back with a vengeance.
There might be extreme fatigue which makes any activity a challenge. We might suffer from a general lack of interest in previously enjoyed activities or lack the motivation or ability to maintain our normal routines. But this doesn’t mean we have become clinically depressed or that we are lazy. Our brains are hard at work, using an incredible amount of energy for the repairs which needs to be done.
Some of us develop intrusive thoughts or obsessions. These thoughts are frightening. We need reassurance they will go away, and they will, as we recover, but at the time, they seem overwhelming and there is little hope that we will ever be free from them.
Cognitive Behavioral Therapy doesn’t help much in withdrawal because the symptoms are mostly caused by a dysfunctional brain and nervous system as it attempts to restore its previous balance of operations. These symptoms are not caused by faulty thinking and behavior, although our thinking and behavior can be effected by the ongoing repair process. It’s confusing, chaotic, exhausting and unpredictable. Very little about ourselves or our lives is familiar or comfortable any more, imagine trying to live like that day after day, not knowing when any relief is coming.
It’s helpful if someone can just listen, sometimes repeatedly as we try and describe what we are going through. These extreme experiences are unlike anything most people can understand or even imagine, we need to be listened to and validated, it seems to help preserve our sanity as we slowly find our way back to a normal version of health and wellness. We need the assurance that what we are going through is ok, and normal for the circumstances. That it will end eventually and we will start feeling better in time. We need you to listen, no matter how long we keep talking about what’s happening and what we are going through. It might be boring or difficult for you, but imagine what its like to be suffering so intensely for so long, and going through it completely alone, with no one who even cares enough to listen. Psychiatric medication withdrawal syndrome is traumatizing. We are frightened of the process and we are frightened we will always be this sick. We need you to listen to our fears. We need to know we are loved.
We don’t need advice, treatments for other illnesses or to be told we need to toughen up and carry on, or that we are exaggerating or imagining what is happening. We need you to understand, accept what we are going through and offer some genuine help if you are able to.
It would be good if you took the initiative to help us stay engaged in life to the extent we can cope with. Too many people going through withdrawal end up getting ignored, abandoned and isolated, as friends and family forget about them as time goes on because recovery might be taking ‘too long’.
Our lives become unrecognizable. Our surroundings often look strange and we become strangers to ourselves. We are frightened, confused, tired, hopeless and easily become depressed, often in pain or discomfort day after day, month after month and sadly in some cases, year after year. The only cure for this syndrome is time. We feel isolated and alone, misunderstood or disbelieved. We desperately lack support and validation and need people to remind us we are healing and that our fragmented lives will knit back together in a new, and often improved way.
We also need to be treated with respect. Most of us coming off psychiatric medications are not drug addicts in the normal sense of the word. We became chemically dependent due to a doctor’s prescription. We took our medications exactly as instructed, but still became dependent and then sick beyond imagination, when trying to stop. But not sick with our original condition or symptoms, this is something new and much worse, caused by the way our brain changes in response to certain medications, and what happens when we stop taking those drugs.
We are sick because we trusted our doctors to know what was best for us, but in many cases, long term use of these medications has caused persistent functional brain changes, which can have effects like actual brain damage, which takes time to recover from.
There has been no research into how these drugs effect people when taken for longer than a few weeks. Drug trials generally last 12 weeks. We have no idea what these drugs do to a brain when they are taken every day for months and years. Even during the 12-week trials, performed by drug companies for FDA approval, there have been documented adverse effects, and even suicide, in previously healthy individuals, but these negative events are generally not disclosed at the time and only come to light long after the drug has been approved, marketed and earned millions of dollars for their manufacturers.
If you know someone who is struggling to recover from withdrawal and damage from psychiatric medications, please do your best to listen, comfort, reassure, and encourage the person you are supporting. If you are not the emotional supportive type, that’s ok, help with practical things is just as important. Acceptance, non-judgement and an offer of practical help will be much appreciated too. But do take care of your own needs and watch out for compassion fatigue. Take breaks when you need to and nurture yourself.
This iatrogenic syndrome, causes marriages to end, people lose their homes, business, jobs and friends.
Family and friends pull away or shame us for not “snapping out of it.” We need people to understand we are healing slowly from brain damage. It’s the process of change, which the brain and nervous system must go through, which is causing extreme symptoms in both mind and body.
Rarely do people have any idea the depths of hell we have survived and continue to survive as we crawl towards recovery. Many have been told to stop talking about it, to snap out of it, and to just think happy thoughts and they would feel better. If only I could have done those things, but when you have a broken brain, its not possible. Would you tell someone with a broken leg to just get up and go for a walk, and they would feel better? I don’t think so.
Vitamin supplements, herbal formulations, caffeine, sugar, msg and other food additives or medications can cause symptoms to flare up. Alcohol must usually be avoided, as well as any drugs or substances that target brain receptors. Fluoroquinolone type antibiotics should be avoided as these can cause serious reactions. Stress should be avoided or reduced as much as possible.
After recovery, we can do more, and enjoy life again, but our central nervous systems will still be fragile for quite some time. We may remain vulnerable to all kinds of stress for several years. Please understand that once our symptoms resolve we still need to take care of ourselves and not over do things. There are many stories of fully recovered people who have relapses because of pushing themselves too much too soon.
It can take a long time for brains to heal from the damage caused by psychiatric drugs. But they do heal. We need people to love us every step of the healing journey, for it is a lonely, frightening, and depressing time in our lives. We need to know we still matter, that we are still lovable and loved.
If you are going through this yourself, extreme self care and self love are going to be needed. Do whatever it takes to survive, nurture yourself as best you can and time will take care of the healing. If you have understanding, compassionate people in your life, who are willing to support you through this difficult time, it will be a blessing and will take the edge off your suffering, easing the sense of isolation and abandonment, which is common when going through this.
None of us want to be sick and suffering like this, we are not to blame. We trusted doctors to keep us safe from harm, but were mislead and let down. Now we are sick and suffering, abandoned and invalidated by the doctors who were responsible for causing the harm we now endure. This is not our fault, we have developed an illness because we took a medication given by a trusted medical professional. This syndrome is as bad as any condition which would be taken seriously if caused in any other way. Unfortunately for most of us currently in this serious situation, we must struggle through our recovery process alone, invalidated, unrecognized and unsupported.
There are a lot of profits, reputations and careers to be lost when the truth about the harmful nature of these medications is finally recognized and acknowledged. For now, powerful interests are managing to keep the truth about these drugs hidden from public awareness and most doctors.
We need to survive and recover.
Please educate yourself about this so you can better help yourself or your loved one to recover, and to protect yourself and others in the future.