Note: Lori Heckenkamp passed away on July 14, 2017.
Dear Dr. X,
My name is Lori Jean Heckenkamp. I am 57 and a patient at the Cancer Center where you head the gynecologic oncology group. I began treatment in June, 2015 for advanced ovarian cancer. I will soon be free of this failing body and damaged brain and for this, I am grateful.
It is this damaged brain that I am writing in regards to today. I am writing to you about benzodiazepines because cancer is not what ultimately ruined what life I had left but rather a prescription for a benzodiazepine given to me by your facility.
Many medications were thrown my way, including the one that would destroy my life. That prescription was Ativan ā a benzodiazepine.
In May, 2015, I saw one of your staff oncologists with concern about symptoms– the whirlwind of appointments, ultrasounds, blood work, scans and clinical trial discussions began. I was forced to quickly find my teenaged daughter a place to live as I moved in with family for help. Next came the rush to surgery, ports placed and chemotherapy sessions. Many medications were thrown my way, including the one that would destroy my life. That prescription was Ativan ā a benzodiazepine.
The Prescription
Early on I spoke with one of your nurses and conveyed to her that I was frightened about starting chemotherapy. In a chirpy voice she said āa lot of our ladies like Ativan!ā She explained that Ativan (generic lorazepam) was an anti-anxiety medication that helped worried patients sleep and control their situational anxiety. At no time was I given any warning about this drugās potential for creating dependence and severe, debilitating, protracted withdrawal symptoms. I was not told that Ativan, like all benzodiazepines, was meant only for short term use of just 2-3 weeks. And so, being uninformed, I made the gravest mistake of my life. I said yes to the prescription.
I read the informational pamphlet that came with the Ativan. It did mention some of the possible withdrawal symptoms, but in no way did it convey how severe and protracted they can be. I recall being reassured by a statement in the literature that those who have āaddictive personalitiesā should take extra care when considering a benzodiazepine. I never smoked or took recreational drugs and averaged about three alcoholic drinks per year, so I erroneously assumed I would be safe.
For the seven months of chemotherapy, I took one milligram of Ativan every evening exactly as prescribed. I did sleep well, and recovered nicely between chemo sessions.
Short Term Use?
In November, 2015, treatment ended. I was in remission and excited. I knew the cancer was likely to return, but I was determined to make the most of my cancer free days. Most importantly, I planned to spend my time with my precious daughter and possibly travel to England.
I was then told, for the very first time, Ativan is only meant for short term use.
Shortly thereafter I called the Center to renew the Ativan prescription. I was told that because chemotherapy treatment was concluded, the Center would no longer prescribe them, and that I needed to contact my regular primary care doctor. I was then told, for the very first time, āAtivan is only meant for short term use.ā
The first tiny ring of an alarm bell went off in my head as I hung up the phone. What was meant by āshort term useā? I had already been on the benzodiazepine for seven months.
Since I had completed treatment and achieved remission, I decided to stop the Ativan. In December, 2015, I reduced the dose by half. Within a few days, everything went sideways. My sleep became severely disrupted. I had constant nausea and bouts of vomiting. I became dizzy and my head felt spacey. I spent Christmas Day with my head in the toilet, and both New Yearās Eve and my daughterās nineteenth birthday in bed. I didnāt know what was happening.
After a couple of weeks of misery and mystery, I decided one night to forego the Ativan. I was up all night. My heart began pounding and I felt indescribably sick. Sometime during that horrible night, one word popped into my head ā āAtivan.ā
In the morning, I dragged myself to my computer and began to investigate. One Google search returned the devastating truth. I had become dependent on benzodiazepines. The more I read, the more horrified and enraged I became. I read testimonies of torturous long tapers. I read of terrible symptoms that went on for months or even years. I read of careers, homes, relationships and health destroyed. I read of down-regulated GABA receptors, cortisol surges, and major disruptions to the proper functioning of the brain and the CNS. I read of poly-drugging by physicians who didnāt believe that the benzodiazepines were causing the symptoms, but that the patient had an underlying psychiatric disorder. And I read of suicides.
Stopping Benzodiazepines
Greatly alarmed, I went first for help to my primary care physician, who advised me to get off the benzodiazepine. She unfortunately switched me from Ativan toĀ Xanax, a shorter acting benzo, for the taper. She also decreased the dose. This was a mistake, and the ensuing three days were horrifying. I wept in my auntās arms, sobbing āI canāt keep feeling like this.ā Please hear me now when I say to you that not once during my 7 months of cancer treatment did I ever feel as horrific and sick as I did that night.
Please hear me now when I say to you that not once during my 7 months of cancer treatment did I ever feel as horrific and sick as I did that night.
I went back to the 1 mg of Ativan and felt a bit better. I then went to a psychiatric addiction specialist, who switched me from Ativan to the long half-life Valium, and we devised a taper plan. I started at 8 mg of Valium, and over the course of a year ā the span of my precious remission ā I tapered slowly downward. I had made it to 3 mg when the cancer returned. I felt terrible the entire time. I wondered if I was an anomaly. Women in our local ovarian cancer support group told me they had no problem discontinuing the Ativan.
My primary care physician expressed surprise at how much difficulty I was having. But after participating in the large online community of benzodiazepine sufferers, I learned I was not unique as there are thousands of people who are terribly sick and fighting for their lives because of benzodiazepines.
I learned that unlike opiate dependence, the benzodiazepine dependent person in withdrawal, does not recover in 2-3 weeks. Many do not recover in 2-3 months. Some do not recover in 2-3 years. And even sadder, some only improve, but never fully recover.
I am the woman with terminal ovarian cancer whose remission was ruined by an entirely preventable iatrogenic illness.
I am the woman with terminal ovarian cancer whose remission was ruined by an entirely preventable iatrogenic illness. My symptoms during the last 18 months, since I first attempted to stop taking the Ativan, have included crushing head pressure, ice pick stabbing headaches, dreadful insomnia (four broken hours is a good night), tinnitus, nausea, muscle weakness (ājelly legsā), muscle cramping, tachycardia, cognitive dysfunction, inability to concentrate, dizziness and a pronounced and very unpleasant feeling of detachment and spaciness, visual disturbances, flu-like malaise, intermittent low fevers, chills, song loops in my head, painful nerve āzapsā in my teeth, memory problems, and ātoxic morningsā, when I feel so ill upon waking that I can barely move. I have been too ill to travel, attend a concert or movie, or eat at a restaurant. I was too sick to spend any time with a very dear friend before she unexpectedly and abruptly died and too sick to spend Christmas or my daughterās birthday with her, help her move into an apartment or take care of her when she was sick. This broke my heart and broke hers, too.
I managed to go to work, most of the time, staggering through my tasks while functioning at a significantly reduced intellectual capacity, and then I went homeĀ and got into bed. Chemotherapy was a romp in the park compared to this. Throughout my experience with Ativan, I have not felt depressed but rather sick day after day after day with symptoms brought on by withdrawal of a benzodiazepine taken exactly as prescribed by your clinic.
When I was in remission, I should have been enjoying my time, but instead I endured this torture. Over the past 18 months I have devoted a great many hours to studying what benzos have done to people. Recovery can take multiple years. I am not alone. Unlike many online, my time is limited, I do not have the time to get better.
My quality of life is so poor due to my symptoms caused by benzodiazepine withdrawal that I would rather not extend my suffering any further than necessary.
After thinking this through, I have made the decision not to accept treatment. I am quite frankly too ill to endure more chemo. Moreover, since recurrent ovarian cancer is a terminal diagnosis, my oncologist informed me that chemo treatment would only extend my life for a limited time. My quality of life is so poor due to my symptoms caused by benzodiazepine withdrawal that I would rather not extend my suffering any further than necessary. My oncologist did his best to dissuade me, but I believe that there are worse things than death, and the thought of slogging through the relentless daily misery of cancer treatment and acute benzo related sickness is just too much to take. I realize that my decision to stop further cancer treatment and let the disease take its course is unconventional, and not one that was taken lightly. This is my life, and I want to enjoy it and live. Please do not chalk this off to ādepressionā or blithely ignore this letter.
My Message to the World
Thousands of people have been harmed by this medication. We deserve better than this from our doctors. I deserved better. I walked into your hospital to get help for my ovarian cancer, and I walked out ten times sicker.
The greatest mistake I have ever made in my life was agreeing to take Ativan. The second greatest mistake was trying to get off. In both cases I was following doctors orders. I wish that someone had suggested remaining on the benzo as an option, but all of the doctors I communicated with encouraged me to get off. It is clear now that this was poor and reckless advice.
If I were to receive a phone call tomorrow that a complete cure had been discovered that would forever eliminate ovarian cancer from my body with just one magic pill, I would not care. It would not matter to me, because I would still be sick from the benzodiazepine, and that is something I can no longer continue to endure.
If I were to receive a phone call tomorrow that a complete cure had been discovered that would forever eliminate ovarian cancer from my body with just one magic pill, I would not care. It would not matter to me, because I would still be sick from the benzodiazepine, and that is something I can no longer continue to endure. The daily misery of benzodiazepine illness far eclipses the horror of cancer. That is a message I want to burn into your brain and your heart so that you never forget it.
I will be gone soon. Remember me. Remember the patient that your facility destroyed with an iatrogenic illness. An entirely preventable illness. Learn from what has happened to me. Please educate yourself and your staff, and do not let this happen again to one more patient. If any good could come from this, it is that medical professionals would become educated about benzodiazepines, believe that the illness and damage are real, and change their prescribing methods. Do not prescribe it at all, if possible, and if you must, make sure your patient is fully informed of the potential consequences. Learn how to safely taper a patient off benzos if you are the prescriber who created the dependence and only if it is advisable for the patient to discontinue.
The Cancer Center does good work. Let it do better work.
Sincerely,
Lori J. Heckenkamp
Iām a journalist of 26 years experience. I went through Benzo withdrawal and it nearly killed me. I lost my health, my job, my marriage and my home as a result. It destroyed my life. I corresponded with Lori after we met on an online support group. This is one of the worst medical disasters of our times. Victims are gas lit, fobbed off and dismissed. Iāve left my email.
Its the withdrawals not the wonderful medication itself. If you have cancer just stay on it remission or not. The docs dont understand that this medicine is what keeps us sane through cancer. Remission is just a break
. The cancer will return. Ativan or the generic brand is only a stage 4 drug, easy to mmake and cheap. Just tell a guy he cant have sex anymore or work his job… hes addicted to that everyday. Tell a person they cant drink alcohol anymore. Tell a person they cant gamble anymore… benzos are not a bad thing to be addicted to ESPECIALLY when it improves your life versus the other things I mentioned
Complete and utter torture for years on end.
Rose, Shame on you. I have known Lori for 35 years. She was always steadfast & true. You do not know what you comment about.
I went thru about 3 years of severe benzo withdrawal…and have talked to a few people that had cancer (and recovered). The people that had cancer said severe benzo withdrawal is FAR WORSE than any cancer or chemo treatment
In my opinion Benzos should be outlawed. I was prescribed Ativan 0.5mg every 6 hours as needed for anxiety, my doctor would give me a prescription for 120 tablets per month. I rarely ever took it (2 per month If that), and only if I had not slept well the night before or had a rough day. This past spring was particullarily rough for me. I experienced some heightened anxiety with panic attacks and insomnia. I started taking the Ativan 0.5mg before bedtime and this worked so great that I continued taking it, /after about 2 weeks I stated experiencing anxiety and panic attacks mid morning for no apparent reason. I began taking 0.5mg mid morning. My anxiety began to worsen and I found myself taking Ativan 0.5mg 3 times daily, after all my doctor prescribed 120 tabs per month. Even with 3 times a day, my anxiety became worse and I couldn’t understand why. After about 6 months of this a light bulb went off and I realized that I was having interpose withdrawals. My doctor told me I could just stop taking it, but I knew better or so I thought. I began tapering by breaking the pills in halves and fourths. I did this in 2 week increments and my withdrawals symptoms worsened. I have severe weight loss 23 lbs. my anxiety is at least 100x’s pre Ativan. I have stiffness, restlessness, muscle twitching, severe insomnia (lucky to sleep 2 hours). I have hair loss, dry mouth, palpitations, increased heart rate and the most devastating is dental problems. I have always practiced great oral hygiene and still do. My gums are extremely diseased and my once very health white teeth are now yellowing snd every tooth in my head is starting to loosen. I am devastated. My teeth will have to be extracted, but I am worried that I won’t be able to find someone to do the extraction. I have read that if you have a history of illegal/street drug use many dentist will not do extractions and restorations. I am scared beyond belief. Ativan is the only medication that I take besides supplements. My son is getting married in September and I am terrified that I won’t survive to be at his wedding.
Some people with very bad anxiety and panic disorder need Xanax or any other anxiety drugs. Stop trying to scare people with your phony stories. People that need help should NOT have to suffer.
You have incorrect information. People who take benzodiazepines such as Xanax actually tend to develop worsening anxiety in the long run. The stories here are not phony. These drugs have the potential to harm people. I’d strongly suggest you do more research.
I think people are different both my mom and aunt have used xanax for 20 plus years.my aunt 1mg a day and my mom used for months then when needed. No side affects at all both over 70.
Listen you, I’ve been through the same thing, they had me on it f ok r sleep it ruined my life!
You poor uneducated fool…. Benzo withdrawal is jus about the WORSE THING A PERSON CAN ENDURE . Until you have gone…even 1 day… suffering with a benzo injury…you have ABSOLUTELY NO IDEA of the NONSTOPO HELL ON EARTH it is.
Rose you clearly have not endured the torture of benzo damage. It is the most horrific, indescribable torture there is. Not even close to what itās like to have anxiety and panic I assure you. People need to know what theyāre up against when taking them. I sure didnāt. I am almost seven years since I discontinuing taking it and I Iāve endured about 100 hell on earth symptoms. You have no idea. You ignorant human being. I hope nobody close to you ever needs to rely on your support or theyād probably kill themselves.
How do you feel now I’m a month out and the Horrible pressure in my head and tinnitus Also , not being able to sleep head zapps,Stiff neck About every symptom I can imagine.When is it going to stop??
You donāt know the meaning of suffering until you experience acute or protracted benzodiazepine withdrawal. There is nothing that compares to it on earth. I could never have imagined I would suffer for over four years so far from taking a medication for only 6 weeksā¦four of which were tapering as instructed after I had inter dose withdrawal symptoms after only having taken the meds for 2 weeks! One of my closest friends killed himself due to the horrific symptoms he was enduring from benzodiazepine withdrawal. I guarantee you would not be saying that if you lived one single day in his shoes or anyoneās who has been through this. Itās abhorrent and disgusting and absolutely insane of you to deny the suffering of thousands which you clearly know nothing about. You should be thankful that you donāt. It doesnāt happen to everyone but to those it has happened to, anxiety and panic would be preferable. Even death is. So before you speak on a topic you have no idea about please consider those who are still suffering and those that have lost their lives to this and their families. I rarely ever comment on anything or go off but this is very dangerous for you to ask as if itās all made up and āphonyā. We are trying to save people so they donāt have to go through the hell we have endured and comments like this just discredit everything we are out here trying to educate others about. Itās almost as if your whole life ends when you become sick with this illness and I am still fighting to get my life back to this day in spite of nearly giving up. The words she said to describe how extremely painful and horrendous this is are exactly correct. Yours are invalid. So just think about that the next time you comment about these medications and how itās all fake! You could be the one that persuades someone to think itās safe or you could be the one to make them research and consider the consequences before risking their lives. I hope you will do the right thing and that you never have to find out the truth. People who do not believe in this illness are the reason why the ones of us who are sick are never believed and that is something you never want to experience trust me. Donāt be part of the problem be the solution!!!
This story saddens me, and is another nail in the coffin for the medical industry in my mind. The relationship between the patient and doctor is one of trust ā the patient trusts that the doctor is taking the best care of them with the most up-to-date information, and the doctor trusts the patient to dutifully comply with treatment. Unfortunately, doctors continue to break the trust of the patient at great expense to their health and well-being.
I have had numerous doctors inform me that the medication they try to prescribe me to slap a band-aid on a symptom ā adderall, trazadone, hydroxyzine etc. ā do not create a dependence and therefor have no withdrawal. As you now clearly understand: every medication that disrupts, interferes with, or replaces a natural mechanism of the body will disturb homeostasis and the body will attempt to regain that homeostasis, leading to dependence and withdrawal symptoms upon cessation. Unfortunately, benzodiazepines have some of the most brutal withdrawal effects known to man.
If you are still with us, I want you to know that I am so sorry for what you had to go through. Only the select few who have gone through it themselves will be able to understand. The rest of us can only use our pitiful imagination to catch a glimpse of the depth of suffering you have been through. I am truly sorry. The amount of strength you have had to muster in order to push on is unimaginable.
Youāre so incredibly uneducated about the medication you clearly take. Itās obvious youāre on a Benzo most people defend it to the death literally until it turns on them. How dare you gaslight an injured person because of your own fear. Benzodiazepines are touted in other countries as one of the worst class of medication available. They have known about the dangers to the brain with this class since the 1980ās. You should explore the drug youāre on do more research. Knowledge is power. But donāt you dare come to someoneās page and call them a liar. Someday you too may be eating your words when youāre literally begging for help and no one gives it to you.
My comment was specifically addressed fo ROSE for her incredibly rude and dismissive comment. I didnāt realize it doesnāt reply directly to her. But that is what my comment is about. ITāS for ROSE. WHOM is so uneducated about Benzos clearly because sheās on the. And knows she canāt do without them.
Right On Rose!
To Loriās daughter and other family, I am sorry for your loss. I am an older practitioner now, but I remember when Xanax and Ativan came out. I do recall the addiction specialists stating the habituation they had seen in some after just 1 monthās use. That is why the 2-3 week limitation recommendation was stated. I never prescribe it because of its risk. Having said that, after those 2-3 weeks clients should be tapered down. It goes in fast but comes out fast and as it comes out many feel awful and this is leads to risk of needing more. The problem is the absence of attention by prescribers In tapering clients down and off the med. And then if anxiety continues the choice and time to initiate a move to an alternative med that posses less risk like clonazepam and for some an SSRI and for some Buspar that that has non-addicting properties altogether. Maybe all of these steps should be undertaken. The same has happened with opiates. The absence of attention to tapering off of the opiate after pain should subside Is the problem and then moving to less risk agents as pain decreases. Unfortunately, many operate by an āall or nothingā. Start them but never taper them until they have habituation and shame on insurance companies for not paying for this taper time treatment- in and out in 20 min is all the time that is allotted with inadequate time for overall evaluation of the patientās regimen initiating taper schedules. Shame on adequately trained nurses who could bring attention to the time that clients have been on benzos or opiates to the physicianās attention. One thing that stood out- that lLori had to undertake her own taper without guidance by her initial system. We did the same with opiates. It is not the agentsā use at times but the time on them- THE TIME NOT TAKEN TO TAPER by the initial system. That is what the step of evaluation and good care is about- but insurance companies need to value this as an imp step and be willing to cover it.
“And then if anxiety continues the choice and time to initiate a move to an alternative med that posses less risk like clonazepam and for some an SSRI…”
“Less risk????” Hahaha!
Doc. With all due respect clonazepam is a benzo and is horrific to get off of or stay on. So ate ssris. Not safe or good. Listen up and change .
A hopeful letter. You donāt know for sure if your withdrawal symptoms will get better or not, itās up in the air. My story is I was totally and permanently disabled at age 26 because I was poisoned by a cocktail of chemicals daily. I was never suppose to get better, only advice from the doctor was to maintain a life running from any chemical that made me sick (car exhaust, store smells, plastics and paints, cleaning chemicals and many others) BUT! Even though I wasnāt suppose to get better, slowly over the course of a few years I improved. I did supplements, made sure my environment was as non toxic as I could afford (organic bed, expensive air purifiers and water filters, and lots of stuff). I was prayed over constantly by a church that found me on a forest trail walking and invited me. I was finally able to work again in a few years against all odds. So now….fast forward 5 years, I now have cancer linked to my chemical exposure. I thought for sure I was doomed for the rest of my life, since chemo is pumping chemicals into your body, and thatās what already injured me . I saw they gave me Ativan. I wonāt take it. I had them give me something else, which works and isnāt addictive. There are lot of things like the medicinal CBD oil that comes from the hemp plant. That works too, doesnāt make you high because the THC isnāt in the hemp plant. It really made me sad that you donāt want to continue cancer treatment because of the Ativan. I honestly think you should give the chemo a shot again. The chemo breaks your body down, good and bad cells. You get to a point where everything is dying and messed up in there. So if you eat a Taylord diet to your needs then your body can build itself back up to its original homeostasis. I believe this because I went thru it already. Like I said I was poisoned, I couldnāt eat anything, I was down to a underweight BMI. The only option I had was to eat food that I could eat, supplements, and exercise. I built my body back up from poisoned nothing, And eventually was able to work again! Something I had no hope in. remember the body is relentless, it works night and day to try and work the way God intended it in the beginning. I hope you find hope in this, you donāt know what will happen if you try, but you do know what will happen if you donāt. I donāt know you but I donāt want to see you give up. If I had given up (which I had) I would be dead.i had severe psychiatric problem from the poison frying my brain. The pastors that ran into me on the forest trail were the ones who introduced me to that hope that awakened the will to live and fight. I hope this encourages you. Iām living proof a situation like yours can turn completely around
I am dealing with psychiatric medication poisoning myself.. my body is ravaged.. I and weaning my last medication very slowly.. god help us all.. trying to eat right and stay away from toxins.. also gonna do tms to help with my depression and chronic pain.. god will.. I will have faith.. thank you
Jesus, Is this what is wrong with me?!?! I thought 1 Ativan a day was helping me tremendously. I am still taking xeloda the chemo pill from hell when my doctor cut my Ativan from 30 to 15 and I threw my chemo pills away refusing treatments feel like shit and donāt care!!
It is benzo withdrawal.. look up the Ashton manual to withdraw safely..
It’s horrible the way our medical systems work now. What happened to hypicartith oath .All profit driven never mind doing someone’s life .Just keep prescribing junk that kills people greed greed greed .
Last year, on the second annual World Benzodiazepine Awareness Day, a mere three days before we lost Lori, I shared my benzo story publicly on Facebook. For the third annual World Benzodiazepine Awareness Day, I will be sharing Lori’s story. It might be the most powerful thing I have ever read on the subject.
I feel very sorry for you and your family’s and friend’s loss. I do not know what to say but that I strongly agree and just that I have read your letter and how it touched me. I don’t know if it reaches your family but your story touched me.
Kind regards,
Dennis