This is the message Cass left for her friends. These are her own words, unedited.
My final message.
I have been suffering greatly for the past year and a half and my physical health continues to decline. I have Benzodiazepine Withdrawal Syndrome (BWS) which is NOT withdrawal at all but rather a brain injury caused by benzodiazepine prescription medication. I took this medication as prescribed by my doctors, never abused it and was never warned about the dangers. Over time benzodiazepines (benzos) damage GABA receptors throughout every part of the brain causing every system in the brain and body to become disabled. The GABA system is the body/brain’s brake pedal. It tells each thing in the body when to slow down or stop. The glutamate system is the gas pedal signaling things to activate, rev up and go. With the GABA system disabled everything is stuck in the on position with no brakes. It’s difficult to regain balance without a brake pedal and leaves every body part, every system, every tissue, every organ in a disabled state. The more time that passes without repair, the more fatigued and broken down everything becomes. There isn’t one part of my body that was unaffected by this brain injury. I’m surprised I didn’t pass sooner of heart failure, stopped breathing during the night or some other important function giving out completely. The brain controls everything in the body. Moving your muscles to walk or type. Reading, writing, thinking. All the senses and how sensory information is interpreted. Automatic functions like heart beat, breathing and digestion. And emotions, mood and reactions to things as well! “Mental symptoms” are not caused by some ethereal thing separate from the body. They are caused directly by physical processes inside the brain. When the brain is damaged, all of these things are also damaged. So all of the things this medication was supposed to treat become amplified after the damage is done, as well as causing damage to every other system. The average recovery time from this brain injury is 6-18 months. For many it takes years to recover and some are left with permanent damage.
People can have BWS to varying degrees of severity. Here are some things that make BWS more severe, last longer and the damage to the brain more extensive:
- Duration – According to the drug manufacturers benzos are not to be taken longer than two weeks but my doctors prescribed them to me for six years and without any warnings. I would have been on them longer if I didn’t start to suspect they were the cause of some health problems cropping up.
- Multiple withdrawals – I was taken off them and put back on them many times before my brain could adequately heal which causes something called kindling in the brain, amplifying the damage and making each subsequent recovery period longer and more intense. Generally if someone takes them for a short time, their first recovery will be minimal or not even noticeable at all. Some people still develop BWS even after short term use.
- Larger doses or being on more than one benzo at once. I was on two: xanax and klonopin.
- Being on and off other psychiatric medications at the same time. They all change how the brain works, have their own recovery time after quitting them and decrease how capable the brain is in recovering from the benzo damage. I would also recommend not making any other medication or drug changes while tapering off benzos or while suffering with BWS. That includes hormones, nicotine, psych meds and any other drugs or meds. This is based on my own experience and that of many others with BWS who came before me. Making these other changes during BWS intensified all my symptoms and caused episodes of psychosis.
- Drinking alcohol while on benzos or during recovery. Alcohol and benzos act on the same receptors in the brain. Every time you drink while on benzos it is like taking a much higher dose and it accelerates the damage. I was told alcohol posed a driving hazard only and was given no further information.
- Rapid Taper/Cold Turkey. Each time I was taken off benzos I was instructed by my doctors to just stop or to taper off over just a few weeks which is essentially like quitting abruptly, is dangerous and can cause deadly seizures. I now know that experts recommend using the Ashton Method to taper off benzos very slowly over a long period of time to give the brain space to adjust and start healing. Dr Heather Ashton is the leading specialist on tapering off benzos and this information can be found in the Ashton Manual online.
I tried very hard to find medical help or anything else that might turn my health around and heal my brain or at least ease my suffering to a more tolerable level. Everything I tried only amplified the suffering. Everything I learned about this condition happened well after my last dose of medication and none of it came from my doctors. It’s beyond cruel that doctors did this to me and then offer no acknowledgment or help in the aftermath. Every doctor I saw knew nothing about this condition, refused to educate themselves about it, could not refer me to someone knowledgeable, suggested that I have any number of other unrelated health conditions by picking and choosing only a few of my many symptoms, or simply wouldn’t listen to me. Currently there are very few doctors who are educated enough to help people taper off benzos properly or even just diagnose patients. There are none informed enough to help with the brain injury they cause and to treat other conditions alongside BWS with the complications it poses. Asking for help with this is like that nightmare where you’re screaming for help at the top of your lungs and no one listens, everyone just walks right by as you are drowning. Usually when people seek help for this they are misdiagnosed and never learn what is happening to them. Countless others have died to escape the constant torture this brain injury causes. And they continue to go uncounted because others are unaware BWS is the cause. There is no known treatment for this brain injury and no one is trying to figure out how to help people with this condition. It’s extremely important to me that people know BWS is directly responsible for my death. It is my hope that something good can come from it. That it will shine a light on the brain injury caused by benzodiazepines.
It can be difficult for others to understand the magnitude of my suffering and also to get just how much the medical community has failed me by creating this brain injury in the first place and then turning their back on me afterward. A good example of my symptoms and how I was treated by doctors when searching for help is the movie Brain On Fire. (a true story) The main character has a different illness but the symptoms are similar (except for the seizures, although BWS can cause that too for many people) and the way doctors just threw up their hands and blamed it on mental illness instead of listening, learning and looking deeper.
If I could go back in time I would avoid ALL psychiatric medications. I spent 6 years seeing psychiatrists trying to find a combination of medications to treat bipolar disorder. Not a single medication helped with bipolar symptoms, most made symptoms worse or caused new symptoms, they all made me physically ill on top of it and benzos caused brain damage. Do not buy into the belief that medication can help 100% of people with mental illness. I am proof that’s not true, and not just because of benzos.
Please try your best to understand and set aside what you would have done in my shoes or what you would have chosen for me. I am the only one who has to live inside this body. Euthanizing our pets is considered humane but we do not extend the same compassion to our fellow humans. This is devastating on so many levels. Because of this backward thinking I did not have access to euthanasia or a humane and peaceful death. I had to do it myself. I desperately wish I could have said goodbyes in person. I wish I could have passed surrounded by loved ones. I wish I could have talked about this without judgment, fear of intervention or legal consequences for myself and others. I wish I had access to end of life emotional and physical care. Not being able to talk to anyone about this is the most alone I’ve ever been. No one wants to die alone and in pain. I wish people had access to a safe, peaceful and humane means of exit without having to prove to others their suffering is “great enough” or their condition/illness worthy or terminal. As it stands right now in the United States you only qualify for euthanasia if you would die anyway within a short period of time but if your suffering has no clear expiration date then you are condemned to continue suffering. That is cruel! If you can look at your beloved pet with compassion, mercy and a desire to end their suffering, why can’t you look at me with the same compassion? We need to redefine end of life care and euthanasia so that every person has the right to choose when it’s time to go. In the same way that I want to have a say in how I live my life, I also want some say at the end. I have never wanted to wither away slowly, unable to care for myself, suffering greatly… all of that is unnecessary. Without euthanasia people are forced to suffer, people are forced to find some gruesome way to die that is traumatizing to themselves and to others, people are left completely alone at a time when they need others the most. BWS has destroyed every aspect of my life; my health, my mind, my ability to care for myself, my relationships, it has stripped away my dignity and all quality of life. I did not take my life, BWS did. Some have said it’s selfish to choose death. What’s selfish and amoral is forcing someone to suffer and with no means to end it safely and peacefully. It was my time. I simply could not suffer inhumanely any longer with no discernible end in sight. I choose peace.
My parting wishes:
Please share this letter on my facebook page and share it in as many places as possible. It was the ignorance of doctors that caused this brain injury and ultimately my death. I hope someone comes up with a better term for benzodiazepine withdrawal syndrome. Doctors hear the word “withdrawal” and can only think of the short period when the body struggles to overcome the physical dependence from a drug. It does not adequately describe the lasting brain injury that benzos cause. Even within the community of BWS sufferers most people use addiction language to describe what’s happening to them which is part of the problem when trying to educate the medical community. It needs to be called out in plain language for what it is: a brain injury. Please educate the medical community and the general public about the devastating effects of benzodiazepines. The only way to prevent this from happening to others is to raise enough awareness that doctors will drastically change the way these medications are prescribed or stop prescribing them altogether. Separately, I have written a letter to the medical community that includes what BWS is, my symptoms and history with benzodiazepines. I did not include it here because it is long but I recorded it so it can be used to help with research, education and prevention. You can contact Zain for this information here: firstname.lastname@example.org. Benzos are not just prescribed as psychiatric medications. They are also prescribed for alcohol withdrawal, seizures, insomnia, muscle relaxers, sedation, and many other things. ALL of the medical community needs to be made aware of this in order to prevent future injury and death. Some other online resources: Benzodiazepine Information Coalition – education and awareness. Benzobuddies – education and support for those suffering with BWS or tapering off benzos. The Ashton Manual – how to taper off benzodiazepines. More education and a list of some things to avoid during BWS – https://prescription-drug.addictionblog.org/five-5-facts-about-benzodiazepine-withdrawal-you-need-to-know/
Please advocate for euthanasia. Those who want access to it are not able to talk about it openly and advocate for themselves or are no longer around to advocate for others. I wish I had done this before I became ill. Show your fellow humans the same compassion you would show any other animal on this planet. I’m not trying to convince you this is the right choice for you. Only you can make that decision. But don’t continue to take that choice away from others.
Zain and I have both been isolated from everyone as a result of my disabled condition and need for constant care. We had almost zero external support as a result. Please reach out to him. He will need your help emotionally, financially and physically – help with sorting through stuff, moving and getting rid of stuff, making meals, errands, household chores, help with rent, moving expenses, care for Figgis (fur baby) and generally dealing with the loss of my income, etc. Please, if you ever wanted to reach out to me or help me in any way during this illness, help Zain now. You can make financial donations to help him here: https://zainsunstonestudio.weebly.com/
Thank you. Love and strength to all of you.