Benzodiazepine Withdrawal Syndrome
Benzodiazepine withdrawal syndrome is a desease that is mostly unrecognized or misunderstood by the medical specialists. It's estimated that 40 to 80% of people prescribe drugs like Xanax, Ativan, Valium and Klonopin can experience the very debilitating mental and physical effects of this iatrogenic illness.
I was prescribed Ativan four years ago for sleep. For today my hope is to be a voice for the thousands and thousands of people suffering from benzodiazepine withdrawal syndrome. As I mentioned, many of us are so mentally and physically disabled. We're unable to advocate for ourselves. My hope is to be an advocate today.
To validate the information that I'm going to be provided in this article, I'll also provide with links to medical journals, research studies and things like that.
What is benzodiazepine withdrawal syndrome?
What we understand is that we are suffering from a phenomenon known as GABA down-regulation. This is basically where the GABA-receptor is literally absorbed back into the neuronal axon and we're no longer able to utilize GABA.
As many of you know, GABA is one of the body's main mechanisms for calming oneself down. Tranquilization helps people get to sleep. And when you no longer have GABA-receptors that are functional, this mechanism just simply doesn't work.
Imagine that you've had just a terrible, horrible nightmare. You wake up from this nightmare. Your heart is racing, you're sweating and maybe you're shaking a little bit. But you get up, you know it's not real. You take a few deep breaths, maybe grab a drink of water and things come back down.
For those of us who have been to diazepam withdrawal syndrome, we're not capable of doing that. This illness at its worst is basically like living in a constant state of fear and panic 24/7.
If you also recognize that not only is GABA intricate in almost every aspect of brain function, but it's located throughout it's estimated about 70 percent of a person's body. There are a whole host of physical symptoms that are present as well. And some of the symptoms that I have personally experienced or I'm currently experiencing that I know I share in common with other people in the benzo withdrawal community.
These are as follows: severe joint and muscle pain, hair loss, various skin disorders, disorientation, insomnia, tachycardia, tardive dyskinesia, burning sensations, depersonalization, derealization, symptoms of IBS, memory loss, tinnitus, chronic fatigue, phobia and agoraphobia, intrusive thoughts, auditory hallucinations.
This list to those who are not familiar with benzodiazepine withdrawal syndrome may seem a bit exaggerated or almost impossible. But if you understand where all GABA receptors are located (stomach, liver, immune cells, bone cells, endocrine tissues, reproductive tissues), it actually makes sense.
And looking at it from this perspective that the potential repercussions of not having enough GABA in someone's body are almost infinite
Who is at risk for benzodiazepine withdrawal syndrome?
Well, anybody who uses these on a daily basis is at risk. I know that the safety guideline is four weeks. A lot of warning labels say to not take this longer than four weeks. There are many many people who only take these for four weeks on a daily basis who experience GABA down-regulation.
In fact, the shortest that we know of is someone who's on it for nine days and has experienced benzodiazepine withdrawal syndrome. It can last normally anywhere from 12 to 24 months.
Children are particularly at risk for this because their bodies are growing their metabolisms are changing. They're at much greater risk for developing tolerance much sooner than an average adult.
Again, I know many parents whose children were put on these for seizures and it took them years sometimes to realize that the symptoms that their children were experiencing not the effects of having seizures. But actually the effects of benzodiazepine tolerance and withdrawal syndrome.
It was reported recently in a news broadcast that there are 127400 infants between the ages of zero to one that are on prescription benzodiazepines.
People who have cold turkey are particularly at risk not only for benzodiazepines withdrawal syndrome but something that's known as pause or post acute withdrawal syndrome. This means that their symptoms are more severe and lasts longer. Instead of 12 to 18 months, it could last 24 months or even 3-4 years in some cases because of the manner in which they withdrew.
Also please remember that people who detox off of these drugs experience the same symptoms as those who are cold turkey. Because it's four weeks is just simply not a long enough time frame for people who have down-regulate GABA receptors.
The reason for this increase in severity and time frame for withdrawals people who do cold turkey or detox is because of something called kindling. Kindling is anytime somebody takes a substance like alcohol or a benzodiazepine, which affects GABA receptors, and then they call turkey from it. The next time that they get back on a drug like that, they are at risk for increasing severity. Symptoms, duration and so forth. It increases exponentially.
It's imperative that doctors understand that people who are on these medications who maybe are still taking them regularly and haven't even attempted to withdraw from them could be experiencing the symptoms of GABA down-regulation.
If a patient presents with a worsening of symptoms or new symptoms, no matter how unrelated those symptoms may seem, it's extremely important to look at the drug as the potential source of the problem. Doctors should not blame the patient.
What can be done for people who are suffering from benzodiazepine withdrawal syndrome?
The first thing obviously is to become educated. Many different researchers refer to Ashton, who is the world's leading authority on benzodiazepines and withdrawal.
What she found in her clinical trials is that a 10% volume reduction seems to be the most humane and safe way to taper people off of benzodiazepines. This means that people that are on shorter acting benzos would need to spend a period of four weeks crossing over to an equivalent amount of Xanax and then reduce that amount by 10% every four weeks or so.
This doesn't mean that 10% is a hard and fast rule. She has that as a suggested guideline. People who are tapering off of this mood to be allowed to taper at a rate that is comfortable for them. Of course, comfort is a relative word since there's going to be a lot of pain and suffering.
It's also important that people who are still trying to taper off these medications have access to medication that is easily tapered. A lot of us are doing this on our own. People are trying to use a razor, a scale and cut their medications that way. A lot of us are doing various forms of liquid titration where we actually take pills and dissolve them in water and pull a little bit out at a time.
For those of us with shaky hands, foggy brains and poor memories it would be such a relief to have access to a liquid form of medication that is easily tapered. Unfortunately, the form of Xanax that is usually ordered from the pharmaceutical company comes in an alcohol solution.
I myself tried to take in liquid Xanax and had a very poor reaction to it. Any warning label that you read says not to mix benzodiazepine and alcohol.
There are actually a lot of compounding pharmacies to which people have access. That would be a great way to provide people with a form of powder Xanax that's mixed up in an almond oil solution that people can use to taper.
I'm also reminded of the Hippocratic oath one of the covenants in there. It says to not fall into the twin traps of overmedication and therapeutic nihilism. When it comes to people who are experiencing benzodiazepine withdrawal syndrome we're going to present a lot of symptoms for which there are a limitless amount of medications that we could be prescribed. However, there needs to be a lot of caution used before prescribing anybody going through this any kind of medication, particularly psychiatric medications.
For many of us, this condition is relatively temporary 1-3 years. You have to weigh the risks of treating a symptom that is a result of GABA down-regulation that can only heal when our GABA receptors upregulated versus giving us another medication that could possibly interfere with that or cause to have a terrible reaction.
Because we have central nervous systems that are so extremely sensitive. Even foods and things like that can set us off, causing us to go in what we call waves, where our symptoms are magnified and it can last for days or weeks.
Please, use extreme caution also to fluoroquinolones. We're known to have extreme reactions to fluoroquinolone antibiotics. They needed to be avoided at all costs.
The other thing that is important for those of us who are suffering from this is that doctors believe us not only do we need the validation from the medical community, but we need this to be documented in our medical records. We need this to be recognized so that there is a call for more research into this. So that we can find therapies or medications that can help to alleviate some of our symptoms and make this less of a torturous process.
Of course, don't assume that because a patient is having difficulty withdrawing from a benzodiazepine that they're an addict. In, fact GABA down-regulation has absolutely nothing to do with addiction.
Another important way in which doctors can help those of us in the benzo withdrawal community who are suffering long-term is to provide people with access to disability. This means amending their medical charts so that they have those medical diagnosis codes in there that they can use to apply for disability. Because most of us at some point during this is not capable of providing for ourselves, we're not capable of working, interacting with people even online, can't read, can't watch TV. It's very very debilitating. I've just witnessed far too many people who have lost so much due to this illness.
It's also helpful and necessary that we have access to therapies like cognitive behavioural therapy, mindfulness therapy and other things that will help our brains to rewire correctly as they're trying to heal.
This can be difficult as it's difficult for so many of us to drive. So many of us are just bedridden, homebound for various reasons. It would be most helpful is to have access to therapies that are online or via Skype.
Also encouraging people going through this to join support groups can be life-saving. It can be also very cost effective for both the patient and the or the doctor's offices. Because, as I mentioned before, we expect a multitude of symptoms, which can be very enigmatic and very frightening. Of course, while we still encourage people to get their symptoms checked out, because you never know what could come up during this or what infections we may have things, most of the time what we find is that these symptoms are all normal symptoms of GABA down-regulation. No matter how severe they are, with time they do go away and we do heal.
We need to be reminded of that daily, sometimes on an hourly basis instead of going into the doctor's office every time we experiencing these severe symptoms.
I don't wish to paint a picture here that is bleak in any way. I know basically what I'm saying is there's not a whole lot that we know that can be done other than time and support for people who have benzodiazepine withdrawal syndrome. But what we really could use during this is hope. We need to have hope that there's going to be a change. That this will continue to happen to so many people every year. That there will be an open dialogue between people who are prescribed these, doctors, the pharmaceutical industry and society not only to bring awareness to this but also to consider phasing out these drugs altogether when it comes to daily therapeutic.
As I mentioned before if 40 to 80% of people are potentially at risk for being this severely disabled. We really need to start weighing the risks versus the benefits of these drugs. Not only the implications that have with people to whom it's prescribed, but also to their families and societies.
Is it ethical to prescribe a drug that can cause so many people to be unable to work, people to be unable to care for their children and to be unable to care even for themselves?
Are the consequences of that worth it? I really want to put that question out - is it worth it to prescribed benzodiazepines?