Blog

A Cardiologist’s Experience with Benzodiazepine Dependence and Withdrawal

I am a 40 year old cardiologist from the state of Texas, and I have been harmed by benzodiazepines. I was prescribed Xanax 0.5 mg three times daily as needed by my primary care physician during a health crisis in August 2015 (severe dry eye syndrome). I started out taking Xanax 0.25 mg nightly only as a sleep aid, as my eyes felt like sandpaper and were interfering with my sleep.

After only a few weeks, I began to experience severe anxiety during the day, which required more Xanax (up to 1 mg per day). I started to think that I was going crazy. I also developed a tremor and underwent an extensive neurologic evaluation, including a lumbar puncture that resulted in a severe spinal headache and an ER visit for a blood patch to stop the leaking cerebrospinal fluid. Xanax was never suggested as a cause for my tremor, although my dose relieved the symptoms of the tremor. It got to the point where I needed to dose every 6 hours as the Xanax would only last a few hours, and then I would experience severe symptoms like difficulty breathing, chest tightness, and inability to swallow. I lost about 15 pounds (I am only 5’3” and got down to 115 pounds). I looked like a skeleton. I was terrified to be alone. I would wake up at night after 3 hours of sleep with my heart pounding and in a sheer panic.

After doing my own research, I discovered that I was experiencing inter-dose withdrawals and had become dependent on Xanax. I tried to taper off directly, but the symptoms were too strong. I spoke with my primary doctor and told her that I was dependent on Xanax and wanted to taper off. She told me that my problem was all anxiety as I had only been on the Xanax a few weeks, so I could safely cold turkey. She basically treated me as if I were crazy. I knew that I would be unable to cold turkey given the severity of my symptoms. She gave me a prescription for Lexapro which increased my symptoms, and I stopped it after only 3 days. She also gave me enough Xanax to complete a rapid 2-3 week taper.
Fortunately, I found the Ashton manual and Benzobuddies support group online and scheduled an appointment with the best psychiatrist in town. I brought him a copy of the Ashton manual and told him I was interested in tapering off Xanax by crossing over to Valium. Fortunately he listened to me, agreed that I was indeed dependent on the Xanax, and he agreed with my plan to taper off with Valium.

During a period of about 5-6 weeks, I crossed over to Valium while weaning off the Xanax. Once I was on a stable dose of Valium (15 mg daily), I began my taper. I have been tapering Valium since January of this year and have proven to be very sensitive to withdrawal symptoms. I am currently down to 8.5 mg daily.

I experience a host of benzo withdrawal symptoms, the worst of which include a pounding heart, tremor, severe nausea, low appetite, insomnia, muscle spasm, severe acid reflux, severe constipation, confusion, anxiety, and depression. I constantly live in a state of terror and “fight or flight” mode.

My life is a living hell. There have been times after cutting my dose where I have been in so much despair from my symptoms that I have considered ending my life. My mind constantly tells me that I will never make it, and that I will never get better. The only things that have kept me going is my husband and 5 year old daughter. Honestly this is probably the only reason I have not ended my life.

Just to be clear, I do not have any intention of ending my life. But I still am left with these feelings of impending death. I have persevered through much and will continue to persevere. I have learned and am still learning to deal with my symptoms. Fortunately, I made the decision to become a stay at home mom several years ago so I do not have the requirements of my work. There is no way I would be able to handle them from either a cognitive or physical standpoint. I have had to hire a nanny to help me with my daughter and household chores as I do not have the energy to get everything done, and there are days I am not safe to drive. My life is currently severely impaired. I cannot travel and I struggle to do day-to-day tasks. My entire family has been severely affected by my withdrawal syndrome.

As if benzo withdrawal were not enough, I was diagnosed with breast cancer at the end of April after having a biopsy done on a painful lump I found on self exam. I had just made a cut to my Valium dose 3 days prior to the diagnosis, and instead of going back to my current dose at the time, I stuck it out. I spent a week with little sleep, awake in my bed all night, shaking with terror.

I underwent double mastectomy with tissue expander placement. The surgery was successful, but recovery was much harder for me due to the taper. The tissue expanders were placed under my pectoralis major muscles and I went for saline fills every 2 weeks. The pectoralis muscle spasms were excruciating and were exacerbated by my Valium withdrawals.

Although I held my Valium dose constant before and after surgery, I experienced increased withdrawal symptoms about 3 weeks after surgery (I am assuming the anesthesia and other post-op meds increased the Valium levels in my system temporarily, and I went into withdrawal when the meds wore off). Again, I spent a week with little sleep, lying in bed shaking, all my muscles spasming, including my painful post-operative chest. My symptoms were so bad that I considered updosing, but after discussing with my psychiatrist, I decided to ride out the storm and was able to stabilize.

In all this time of tapering, I have never once taken an extra dose or increased my dose of Valium. I was fortunate that my lymph nodes were negative and my surgeon was able to get clean margins on the tumor. I was staged at 2A and fortunately did not require chemotherapy or radiation. I was started on the hormone blocker tamoxifen which has somewhat complicated my taper due to the removal of estrogen from my body. I spent the summer in physical therapy dealing with my chest muscle spasms, which have greatly improved, because of the skill of my therapist and my dedication and perseverance.

After about 6 weeks after my surgery, I felt ready to resume my taper. I have most recently cut down to a total of 8.5 mg per day and am holding at this dose in anticipation of another surgery to exchange my tissue expanders for implants in early November. I am of course nervous how this will affect my withdrawals. It’s interesting that cancer has been nothing compared to the horror of withdrawals, and I have heard that from several other cancer patients I have met along the way.

I am angry about what has happened to me, and to so many other people. I am a member of the web forum Benzo Buddies, and I have met so many people that were put on these drugs by their doctor without being informed of the possible consequences. I will tell you as a physician, that we are not trained about the severity of benzodiazepine withdrawal syndrome or the differences between the half-lives and potencies of the various benzodiazepines. I attended medical school at the University of Texas Southwestern in Dallas, where I graduated Alpha Omega Alpha (top 5% of my class) in 2001. I did my internal medicine training at Washington University in St. Louis. I was taught that benzodiazepines are potentially “addictive”, that they are not a long-term solution, and they need to be tapered off if used for more than a few weeks. But I was never educated about things like inter-dose withdrawal, tapering methods, severity of the withdrawal syndrome, and difficulty in discontinuation of the drug. These were not drugs that I used in my everyday practice as a cardiologist, with exception of IV sedation for a procedure. I thought I was safe by taking a low dose of Xanax for just a few weeks and could come off fairly easily. I was mistaken. If this can happen to me, a physician who graduated at the top of her class, it can happen to anyone. I bristle when I hear the term addict in reference to these drugs. I am not a person with a history of substance abuse, nor do I have a tendency towards addiction. I am tired of putting these poison pills in my body. But unfortunately, I am chemically dependent, and the drug that is poisoning me must be tapered slowly to keep me from becoming extremely ill.

I propose that there needs to be better education in medical schools and among practicing physicians, especially in the fields of primary care, psychiatry, and oncology where these drug are used frequently. I also think there needs to be better regulation of the prescribing of these drugs, and it should be mandatory to obtain informed consent from the patient.

I will leave you with this thought. On my pharmacy pick up window, there is a sign that reads “Must show ID for all controlled substances for pickup”. I have picked up my Valium prescriptions monthly since January and have never once been asked for ID. No ID required for a drug that sudden discontinuation can cause seizures and death. No ID required for a drug that is considered to have more severe withdrawal than from heroin. No ID for a drug that has been implicated in numerous deaths from overdose (often in combination with opiates). No ID for a drug that has caused numerous suicides from the sheer horror of the withdrawals. Things need to change. I am not the only one struggling with this horror right now, and this madness must be stopped.

Laura Christine Huff, M.D

Dr. Huff is a cardiologist, mom, wife, breast cancer survivor and director at the Benzodiazapine Information Coaltion. 

Follow Christy on Twitter here

Check out the Benzodiazepine Information Coalition 

Natural help for anxiety and stress? Try the Blooming Wellness ZENTones 

( You will get instant access!)

Great stress-reduction and meditation tool?

Try the ZENBand

Read Dr. Stair’s novel Manic Kingdom that questions conventional systems, like the conventional mental health systems in a colorful, you-won’t-want-to-put-this-down kind of way!

17 Responses to “A Cardiologist’s Experience with Benzodiazepine Dependence and Withdrawal”

  1. This breaks my heart on so many levels! I too am a breast cancer survivor. 4 1/2 years ago a friend shared Isagenix nutrition with me, talk about health and life changing. The great nutrition combined with cellular cleanses has given me my health back. I used to get sick often and stay sick for up to two months. Since I started consuming this super nutrition, I have only been sick once in 4 1/2 years, life changing for me.

    • Interesting about Isagenix. I’m not a big fan of it myself, but if it works for some people, have at it! Thanks for posting 🙂

  2. Hi Laura
    I too am in the middle of taper crossing from Ativan to Valium. I was on Lexapro for 12 years then Ativan got last 2.5 years. My taper started late Feb on 12.5mg converting to Valium, as per Ashton Manual protocol.
    I am going through debilitating symptoms similar to yours and everything in your blog feels like a mirror of my own current storm. Can I ask you how long you were on Xanax for in total before you began your taper?
    Thank you for writing your blog, so great to know that physicians are speaking out about this modern mess!
    Stay strong, you will make it!
    Tina

  3. Please tell me how to stop the pain on left side chest,male, even tried CBD edibles. What makes this process stop? Ativan at .5 three times daily and gabapentin for pain and all other symptoms.

  4. Len, I personally use a combo of hemp cbd capsules, about 40 mg a day, kratom (red vein bali) and ib profen/tylenol to help with the body pain/nerve burning. I try to eat low inflammation foods and notice sugar really amps up pain and headaches. Low breads/grains, with meat and lots of veggies has been safe. CBD has helped in other ways with sleep quality and nutrient absorption. It’s not necessarily a gaba antagonist and is really the only calming thing I feel I can be liberal about. I try to do a lot of meta-cognitive training to help with anxiety and bad thinking patterns. I try to meditate and take things really easy to help keep myself in a sort of parasympathetic state. The pain spikes will come and go. I find with a cut I get a new set of symptoms, not new but varying combinations. Sometimes wave or window. This is not intended to be medical advice and follow any state laws and research the herbs mentioned well. This is just my experience and the addition of cannabis and mitragyna speciosa red strains has been helpful on my third taper from valium (crossed from ativan-klonopin-val) struggling since Oct 2016.
    Take care and best of luck to everyone dealing with this. This article from a medical professional’s perspective and expertise is insightful and validating as some around us think we’re over exaggerating, but this stuff will obviously take over anyone’s life in any place. I too was prescribed benzodiazepines for a health crisis and after only 9 days and stopping I was in acute withdrawal and the rest is accounted for above. Even as I knew about benzodiazepines, took them and quit before, quit alcohol years before that… I had no idea it would be this bad. I let my guard down and took klonopin as prescribed after er visits from Ativan w/d and it’s just been a battle since and no doctor or psychiatrist seems to understand my issues very well. I’m at their mercy but I do my due diligence and research and take control of the things I can.

  5. Hi I have watched my husband go through a klonopin withdrawl for 14plus months. His primary care prescribed it for little depression in 2014 left him on it for almost 3 years & kept upping his dose over time to 3mg sometimes twice a day. Come to find out he was hitting tolerance, but we did not know anything about this medication we were just trusting the doctor. Once we started figuring out what was going on we decided this was going to be a never ending thing & that he needed to be off of them. The doctor proceeded to taper him off.. in 3 months!! He started having HORRIBLE symptoms! Anxiety,paranoia,night sweats so bad that he would leave his whole body mark on the bed, intense burning skin, brain burn, muscle pain, stiffness, soarness, tinnitus, digestive issues,gluten became an issue for him & sugar due to the gaba receptors missfiring. The list went on. When we told the doctor he looked at us like we were insane that he should not be feeling this way & that there is an underlying issue. The only thing he gave him was gabapentin to help with the burning & nerve related symptoms. So for 14plus long months he tuffed it out continued going to work & trying to live a “normal” life with us. Until this last year he was weaning off of gabapentin & had a nervous breakdown and was found in a field hallucinating.. I’m not trying to scare anyone that is on gabapentin but just take it slowly when tapering off better safe than sorry. Anyway he was taken to a hospital & the only way they could pull him out of the hallucinations was ativan…(sigh) he stayed on them for about 3 to 3 and a half months.. began another taper after he hit tolerance again. It was smoother this time but the fear & anxiety that came along with it made it intense for anyone that was around to witness it. Once he was able to drop his last cut .0625mg it was a bit of a relief. We were told he has ptsd from all of the past experiences. But who wouldn’t. So here we are 5 weeks out since his last dose of ativan hes not 100% but hes more his old self than he was before. He is also on benzo buddies & will read & read. Sometimes it helps sometimes it can trigger him into a panic. His symptoms aren’t anything like the first withdrawal which is great but if I could get him past the fear I figure he would be even better. It’s a damn shame these doctors do not know these experiences & know how severe they can get for people. I pray that one day a bunch of us will be able to change this, it really does make me hurt for other people that go through this when no one should ever have to. I think the world of medicine needs a wake up call. Best of luck to everyone & prayers. Dont give up!

    • Wow, thanks for sharing such a powerful and heart-wrenching story. Telling your story WILL help change the system. Personal stories are so powerful & with social media, we now have a great avenue to make people heard, who otherwise would not be heard.
      Erin

    • Thank you for sharing.
      Just so you guys know, Dr. Huff has agreed to come on my new podcast ( Causes OR Cures), which will be launching in March! I will post dates, etc…. and please know that I plan on featuring a lot of people with similar stories about prescribed medication.

  6. z1cA0jDhXeM3Go92KmdFYeEadAUTHMk6mhY2ZuUAb6A= January 30, 2019 at 10:23 pm

    This is my life. And the fear of the withdrawal nightmare prevents me from trying to detox off of the 1mg of klonipin I take daily. I am emotionally feeling fine but would like to get pregnant and have very bad urinary pain side effect and fatigue.

  7. I read this article, comments, and other stories on the internet with eerily similar stories of easy on, life threatening taper off, and condescending, harm adding doctors, and wonder what it would take for there to be a class action lawsuit against the medical establishment and drug producers. Otherwise, people will continue to be treated as one off, isolated cases instead of seen as a horrifying pattern.

  8. I learned that there was a class action lawsuit in the UK a few decades ago and there’s a MedWatch group encouraging Benzo-injured people to share their story to do something to affect the system. https://www.benzoinfo.com/2017/07/11/after-60-years-of-silence-a-highly-funded-organization-can-finally-help-us-can-our-community-organize-to-tell-them-how/

    • Thanks for sharing, Eden. I might send this to Dr. Huff, because I bet ( if she doesn’t already know) she’d be interested in knowing this. She’s on Twitter as well. 🙂

      Erin

  9. I began taking Clonazepam in August when I was experiencing neurological symptoms and there was a chance that I had ALS. I also did not know of the dangers that Benzos present, and I took them for 2 months before realizing this. Unfortunately by that time I was months into an undiagnosed illness, and I had given up Google doctoring due to anxiety.

    My original illness remains undiagnosed, meanwhile I’m attempting to taper off the medication that I never should have taken. I’m down to 0.625mg/day from an original dose of 1mg/day. These were prescribed by a neurologist and I’ve been unable to find a psychiatrist that will help me taper. I did find a couple of doctors that will see me outside of insurance for huge $$, but nobody else wants new patients.

    So I soldier on, wondering if my current muscle tightness and increased nerve pain are new symptoms that I should be concerned about.. or simply withdrawal side effects from the taper. It would definitely be a lot easier if I could migrate to Valium so I didn’t have to drop down in such large steps.

    • Thank you for sharing, Steven. Very sorry you are going through this. Check out the Benzo Information Coalition at the link above, because they offer some great advice on tapering and related topics. A very helpful group, as well!

  10. So sorry to hear of your withdrawals and health issues. May you recovery speed up!

    I like Dr. Huff started my Xanax rollercoaster due to a medical condition of Hyperparathyroidism. For over 10 years this medical condition went unnoticed all awhile I went collecting a laundry list of symptoms of which the worst were psychological. I thought I was going mad! Fast forward, I was operated and symptoms started to subside but little did I know I still had another battle waiting for me. The battle of Xanax withdrawals which also continues making me feel as though I have another underlying medical issue. It’s been far from easy, every time I think I see the light at the end of the tunnel another wave of withdrawals comes through. I did make the mistake of getting off and back on Xanax not knowing that it was the withdrawals that were pulling me back in. I finally educated myself with drug abuse websites which brings me to the present. I’ve now been 2 months off and keep pushing everyday to overcome feelings of anxiety, depression, despair, fatigue etc. Some days are much better than others. And I have windows of days that I feel I’ve recovered until another wave hits. I know I will recover, it’s just going to take some time for my body to find it’s balance especially since the illness I had also caused mental illnesses.

    I wish everyone the best and a speedy recovery!

    • Thanks for sharing, Lisa. I think it’s so, so important that people share their experiences, so those other there struggling know they are not alone!! It’s really these grass-roots support groups and informational sites that are helping folks who have nowhere to turn to! Thanks again- Erin ( Dr. Stair)

Leave a Reply

FREE Shipping on orders $30 or more. Dismiss

ZenBands / ZenTones

Subscribe To Our Newsletter

Join our mailing list to receive the latest news and updates from our team.

You have Successfully Subscribed!

Pin It on Pinterest

Share This