On Thursday, August 23, 2018, Cassandra ended her life at age 45 after a year and a half long battle with an as prescribed benzodiazepine injury.  She left behind two notes, both can be accessed on her website, and one is printed below. Headers were added post mortem for reader clarity.

 

What is Benzodiazepine Withdrawal Syndrome

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. Dear scientists: Please come up with a better term for BWS. 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 inflict. 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 yourselves, 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.

Dear scientists: Please come up with a better term for BWS. 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 inflict.

People can have BWS to varying degrees of severity. Here are some things that make BWS more severe, last longer and make 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 the brain could heal which causes something called kindling in the brain, exacerbating 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 upon 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 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 and 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. Dr Heather Ashton is the leading specialist on tapering off benzos. 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 my suffering. Everything I’ve learned about this condition happened well after my last dose of medication and sadly 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.

Everything I’ve learned about this condition happened well after my last dose of medication and sadly none of it came from my doctors.

Currently there are very few doctors who can 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. 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 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 researching how to help people with this condition. It’s extremely important to me that people know BWS is directly responsible for my death. I simply could not suffer so inhumanely any longer without a clear end in sight. I hope something good can come from my death. That it will shine a light on the brain injury caused by benzodiazepines.

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. Usually when people seek help for this they are misdiagnosed and never learn what is happening to them.

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) and the way doctors just threw up their hands and blamed it on mental illness instead of listening, learning and looking deeper.

My History with Benzodiazepines

I was prescribed benzos to be taken daily for six years. The first time I was prescribed a benzo it was 4mgs klonopin daily. After that I was on different amounts at different times. 1-4mg klonopin and 1-3mg xanax. I was taken off benzos many times but never went through the entire recovery process before being put back on them (kindling). Each time I went off, the symptoms of BWS became overwhelming. Because I didn’t understand what was happening to me and doctors did not educate me about BWS, it was easy for them to convince me I just needed to be back on benzos. After years of this, going back on benzos did not bring any relief. I had reached tolerance and became sick all the time. When I quit the final time BWS symptoms became completely debilitating. Each time I quit I was advised to taper rapidly over just a few weeks or quit cold turkey. That’s dangerous advice. It’s too jarring for the brain. Please educate yourselves on the Ashton Method in the Ashton Manual online in order to help people taper properly.

Because I didn’t understand what was happening to me and doctors did not educate me about BWS, it was easy for them to convince me I just needed to be back on benzos.

My BWS is severe. Each symptom goes up and down in intensity individually like each one is circling in its own orbit, fluctuating between medium and severe. None of my symptoms are mild. Most are constant, some have come and gone and come back again, a few have cropped up as new symptoms. Each symptom alone would be challenging to deal with but together they create a symphony of suffering that is difficult to describe sufficiently. I’ve talked to many other BWS sufferers who also had cancer, or been through recovery from heroin or opioids and they all agree BWS is far worse than any of that. The suffering is incredibly intense and complete. It has destroyed every aspect of my life, mind body and spirit. It has stolen my health, my ability to care for myself, my connections with others, my dignity and all quality of life. Recovery is nonlinear. You can start to feel like things are improving only to have everything come back full force over and over again. The vast majority of these symptoms were things I never experienced before BWS. *Symptoms marked with an asterisk were preexisting but it’s important to note that BWS amplified them to extreme levels.

Symptom List

(I have surely left some things out. I’m overwhelmed by so many symptoms at once that it has been very difficult to keep track of them all.)

  • Head, eye, ear pressure and pain like my brain is swollen or there is a vice around my skull. Extreme and frequent headaches.
  • Mouth, teeth, jaw pain. Uncontrollable jaw clenching.
  • Swollen throat, difficulty swallowing, feeling like there is something stuck in my throat. Pain.
  • Stomach – fluctuating between no appetite and ravenous, painful hiccups, acid reflux, indigestion, nausea, pain, cramping, bloating, inability to tolerate most foods like I’m suddenly allergic to everything, distended belly often hard as a rock.
  • Intestines – pain, cramping, constant gas and diarrhea, frequent bowel movements, frequent urination, sharp shooting abdominal pains, loss of bowel control.
  • Muscle twitching, spasms, pain, cramping, stiffness, weakness, shaking, tremor, electrical zap feeling, random sharp shooting pain. Rapid loss of muscle mass in the first few months of BWS.
  • Inability to regulate body temperature. Sudden chills and overheating. Heat intolerance. I used to prefer the heat and now I can’t tolerate anything over 70°F. And I still overheat even during cold temperatures.
  • Exercise intolerance. Any physical exertion amplifies severity of BWS symptoms.
  • Heart arrhythmia, palpitations, racing, slowing rhythm like heart is about to stop.
  • Dizziness comes on randomly even when I’m completely still. Boatiness or feeling of being on turbulent waters at sea.
  • Imbalance and lack of coordination. (has caused falls)
  • Full body weakness and disabling fatigue.
  • Flu, cold and allergy like symptoms – sneezing, coughing, excessively watery or dry itchy eyes, feverish, congestion, sinus pain and pressure, achy, rashes, headaches, sore throat, etc.
  • *Dyshidrotic eczema flairs. Before BWS flairs were mild and only a couple times a year. Now they are continuous and severe.
  • *Genital herpes. Before BWS flairs were mild and only a couple times a year. Now they are continuous and severe with only short periods without an outbreak.
  • Skin – acne, periodic rashes, texture changes, some thin and papery, some rough and leathery, loss of elasticity, excess oil production, other times overly dry, severe itchiness everywhere even when there is no rash present, the itchiness migrates and is sometimes everywhere and sometimes specific spots will itch for weeks/months at a time, the feeling of bugs crawling on and under the skin, electrical zap feeling on skin, sometimes burning pain like I’m on fire, sometimes after a shower my skin is burning and becomes bright red and inflamed, lots of new moles and age spots cropping up suddenly and they all itch, hair loss, unprovoked pins and needles feeling, pain, feeling raw and irritated, sometimes physical touch feels like sandpaper or shards of broken glass like all nerves are overloaded, numbness, excessive skin sloughing all over body but especially bad on feet, hands, genitals, and scalp, excessive sweating (was never a sweaty person), sun intolerance, skin became very very fast to burn and exposure to the sun also revs up all my other BWS symptoms.
  • Rapid physical aging. Too much to list here.
  • Joints – pain, inflammation, popping, feels like they are grinding, sometimes hard to move and very stiff or locked up.
  • Neck pain. Neck spinal irregularity grew rapidly along with a “neck hump” or fat deposit at the base of my neck.
  • Lots of problems in the endocrine system. HPA (hypothalamus, pituitary, adrenal) axis dysregulation. Hormone fluctuations even on HRT (hormone replacement therapy). Many people with BWS are diagnosed with menopause or hormone problems when really the fluctuations are caused by BWS and the body’s inability to produce and regulate hormone systems. I was diagnosed with menopause and also hypothyroid during BWS. Attempting to treat these problems without considering BWS caused more problems and an intensification of all BWS symptoms. Metabolism was severely affected – rapid weight gain, gained 30lbs in the first few months after quitting benzos. Most people lose weight rapidly with BWS. I believe it was the opposite for me because I quit seroquel shortly after quitting benzos and also started HRT at the same time I quit benzos then changed HRT part way through BWS. Constant breast pain, occasional genital pain, loss of libido.
  • Unprovoked adrenaline surges, even when there is no danger or stimulus present. Adrenaline surges when there is a very small stimulus like a quiet sudden sound or movement. This response is extreme and disproportionate to the stimulus, ie. it feels like I’m being attacked by a bear when really I only heard a car door close in the distance.
  • Severe insomnia. Unable to fall asleep, or stay asleep. Constant changes to time of day I’m able to sleep. Nightmares. Waking with intense adrenaline rushes. Sometimes so overwhelmed by sleepiness I cannot stop myself from falling asleep.
  • Blood tests showed my body was unable to process iron. I never had this problem before, there were no factors present that would cause this besides BWS and I had two separate genetic tests done and both showed I do not have markers for hemochromatosis. Doctors were baffled of course and didn’t understand why I had this problem for many months and it suddenly disappeared. I know it was caused by BWS.
  • Nerve pain, feeling of electricity surging through nerves. Random sharp shooting pain.
  • Sensory stimulation overload – completely physically and mentally overwhelmed by even low levels of sensory stimulation.
  • Hearing – constant ringing in the ears, hearing is distorted, sounds are often confusing as if the sound comes in and the brain interprets it wrong or as something else, even quiet sounds seem very loud, startling and overstimulating and can cause an adrenaline rush, loud sounds cause a more severe reaction, sometimes I hear things that aren’t there. Even sounds that are normally pleasant like quiet music are unpleasant and overstimulating.
  • Vision – sight declined rapidly, blurry, distorted, lines of text are often wavy, slanted and hard to read, eye pain, eye pressure, excessively watery or dry and burning, sometimes words or letters look foreign, “floaters”, even dim lights are too bright.
  • Taste – lost it completely. When it started to come back everything tasted wrong or off or rotten. Now it comes and goes.
  • Smell – even mild smells can cause allergic reaction with headaches, smelling things that aren’t there, smells are distorted even familiar smells, ie. at one point my sweat smelled like burning tires or I remember what a mango is supposed to smell like but instead it smells like a rotting carcass.
  • Touch – sometimes physical touch feels like sandpaper or shards of broken glass like all nerves are overloaded. Even just soft clothing can be overwhelming.
  • Breathing is labored like I cannot get enough oxygen or I’m unable to breathe. Sometimes my body takes a frantic deep inhalation uncontrollably. Sometimes it feels like I have to concentrate on breathing or it will stop.
  • Constant overwhelming fatigue.
  • Inability to tolerate any vitamins, supplements or medications. Everything I tried, even tiny doses, brought on a huge intensification of symptoms, paradoxical reactions and even episodes of psychosis. The only thing I could tolerate was ibuprofen. Some things I tried that only exacerbated BWS: vitamin D, seroquel, hydroxyzine, welbutrin, progesterone, testosterone, loestrin 1/10, zoloft, probiotics, marijuana, CBD oil, levothyroxine, mircette. It’s extremely difficult and ill advised to make medication changes or try to deal with other conditions while suffering with BWS. There is a very long list of things to avoid during BWS. Please educate yourselves.
  • Memory loss both long and short term, cognitive impairments (it took months for me to write this), severe anxiety with no external trigger, suicidal, intrusive memories, intrusive though+3ts/images that aren’t my own, dissociation/depersonalization/derealization, panic attacks (had a few in my life prior to psychiatric meds, now they are frequent and uncontrollable), health anxiety (how could you not have this symptom with so many things going wrong throughout the body?!), inability to feel joy/pleasure/love, rapid mood changes, rage, loss of identity, paranoia, despair/hopelessness, constant generalized fear with no external trigger, isolation/inability to interact socially, confusion, obsessive thoughts, uncontrollable crying, inability to practice daily basic self care, psychosis (terrifying visual, auditory and tactile hallucinations, partial or complete disconnect from reality, delusions, paranoia, catatonia. This was never part of bipolar disorder for me. I only ever had psychotic episodes as a result of psychiatric medications, withdrawal and BWS.) *depression (part of bipolar disorder but never experienced anything this severe before BWS)

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.

Benzos are not only 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.

Resources:

Benzodiazepine Information Coalition – education and awareness. http://benzoinfo.com/

Benzobuddies.org – support for those suffering with BWS or tapering off benzos. http://www.benzobuddies.org/

The Ashton Manual – how to taper off benzodiazepines. https://benzo.org.uk/manual/

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/

Cass was from upstate New York and has lived in northern California and Colorado.  She was a big fan of online gaming, specifically RPGs, and she loved animals with a passion.  She enjoyed singing karaoke (when she was able to leave the house), and listening to Amon Tobin and Tool.  She loathed musicals unless puppets were involved.  She went to school for scientific illustration and was a fierce proponent for gender equality, racial equality, and basically every form of equality.  She is survived by her Figgis Liebestraum (her cat), Zain Sunstone (her partner), Chad Narburgh (her brother), Kirk Narburgh (brother) and Sharon Narburgh (mother).  Her website was www.badbenzos.com which is still being maintained.

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