Lisa Ling Got it Exactly Right About Benzos

I just finished watching Lisa Ling’s report on CNN about the dangers of benzodiazepine withdrawal.  I was shocked at the accuracy of the report.  For years, people like me who were suffering from the severe effects of benzodiazepine withdrawal were ignored and made to feel crazy.  We knew stopping the drugs was making us sick, and that the sickness was lasting much, much longer than we were told withdrawal symptoms should last.  But because doctors are taught so very little in medical school about how to prescribe benzodiazepines and about the possible side effects and withdrawal symptoms, they usually dismiss patient claims that benzodiazepine withdrawal has caused long-lasting and severe harm.

In her report, Lisa Ling interviewed a woman who was harmed badly by a doctor-approved, too-short taper from Klonopin.  After being reinstated on benzodiazepines with a prescription for liquid Valium, she sought help from strangers on the internet to find out how to escape the benzo trap.  That may sound like a radically stupid idea, but because this woman had not received the right type of help from her doctor, she felt she had no other choice.  Fortunately for her, she received some advice from people on a support forum called Benzo Buddies that actually helped her to taper safely from her medication.  I had a very similar experience, and I will always be grateful for the support and knowledge I received from fellow sufferers.

Sadly, there are too many who were not able to find help before it was too late.  In her report, Lisa Ling interviewed a couple who had lost their son to suicide after he experienced severe withdrawal symptoms, first from Klonopin, and later from Alprazolam.   Understandably, the couple is devastated about their loss, and furious that doctors are not knowledgeable enough to prevent this sort of tragedy.

If you have not already, please check out Lisa Ling’s excellent report:

 

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The Horrors of Benzos – an Updated Version

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In the summer of 2008, I was battling the increasingly severe symptoms of asthma. At the time, I thought I had a lung infection that would just not go away. I now realize that I was experiencing the symptoms of environmental illness. I had become highly sensitized to the chemicals I was coming in contact with on a daily basis.

Not realizing the cause of my increasingly poor health, I bought a laundry detergent that was to change my life. Yes, I know that sounds melodramatic, but it’s completely accurate. This detergent is advertised as an “eco-friendly” brand, and as I was somewhat aware of the environmental issues surrounding the products we use, I bought it. As soon as I opened the bottle I realized that I might have made a mistake. The fragrance emanating therefrom was overpowering. But I powered on and washed all my family’s clothes in the smelly stuff. Soon, our whole house was enveloped in a chemical cloud, and my lungs were beginning to fill will fluid. By the time I realized that there might be a connection between my symptoms and my detergent, it was too late. I had developed pneumonia.

I called my Naturopath and asked for some supplements for pneumonia. The dose of the herb and vitamin combo she recommended was quite large, but I complied thinking it was the only way to kill the infection. I’m a very small person with a very sensitive system. The dose of vitamin A and Zinc that apparently cures the average person poisoned me. I began to feel extremely thirsty all the time. I could not get enough water, ever. I began to urinate enormous amounts of liquid every twenty minutes or less. I got myself in even deeper when I decided to treat the poisoning by trying to sweat it out, speeding up the process of dehydration already begun.

After about three days, I felt like I was going to die, so it was off to the hospital. There it was found that I had sweated and peed away all of my electrolytes. I was basically peeing out exactly what I had put in, pure water. I received IV fluids and was sent home.

That is when the real mayhem began. I believe now that the IV solution given to me was pure saline as opposed to Ringers solution, so it had no potassium. So the only electrolyte that got replaced by the rehydration therapy was sodium. I’m sure I was in desperate need of potassium. Severe potassium deficiency can cause panic attacks and insomnia, which is exactly what began happening to me as soon as I returned home from the hospital.

Terrified and clueless about what could be causing this, I went back to the hospital, where they diagnosed me with anxiety and sent my home with my first benzodiazepine, Ativan. They prescribed enough for about 5 days. I was so relieved to finally be able to sleep and to calm down that I decided to go to my doctor and get some more magic pills. She wanted to give me some Ambien, but I had heard scary things about Ambien, so strangely enough, I asked for Alprazolam (Xanax), not realizing that Ambien (a “non-benzodiazepine” or “z-drug”) and Xanax are both potentially very dangerous drugs. I was prescribed 1 milligram, much more than the paltry .25 mgs of Ativan I had been prescribed at first. One milligram; it seemed like such a small dose. I wouldn’t find out until much later that one milligram of Xanax is roughly equivalent to 20 mgs of Valium, one of the original and very much maligned benzodiazepines.

Xanax hits you like a Mack truck. As soon as it kicked in, I felt very dizzy and could no longer walk. All I could do was get in the bed and pass out. The next morning I was very tired and weak, but happy; so happy! I couldn’t understand why I’d had any reservations at all about taking sleeping pills! Everything seemed good and calm and mellow. Nothing was wrong. The world suddenly seemed like a much safer and nicer place to be. Unfortunately, this state was not to last very long.

I believe it was between 3 and 5 days later when I had my first real panic attack, not like those wimpy ones I’d taken the pills for in the first place. This was white-hot terror. It began with a hot flash and ended with me rocking back and forth in utter horror, tears running down my face, finally deciding to take my “sleeping pill” at 5:00 PM because my “condition” had returned and I “needed it”. It follows, of course, that I would need more medication if I was going to have to use the pills for more than just going to sleep. My doctor prescribed two more milligrams to be taken “as needed”.

As it turned out, the more pills I took, the more I needed. Eventually I was cutting them in half and spreading my daily dose of 3 milligrams throughout the day to avoid inter-dose withdrawal and the dreaded panic attacks. Three weeks after my original dose of Xanax, I realized that the pills were making me very, very ill. For the first time in my life, I felt suicidal. I was terrified. I stopped taking my pills, expecting a few nights of insomnia and then a gradual return to health. That is not what happened. What followed cannot even be imagined by a person who has never experienced it.

My memory of the first few weeks after I stopped taking Xanax is very hazy, like the memory of a really bad nightmare. For the first couple of nights I stayed at a friend’s house because I knew things were likely to be difficult, and I did not want to subject my three boys to what I knew I had to go through. I threw up all night long. Every morsel of food that I managed to swallow came up within a few minutes of it going down. My skin felt like I had been dipped in a vat of boiling hot oil, like I was being cooked from the inside out. My heart rate was usually between 110 and 140 bpm. I had convulsions, seizures, visual and auditory hallucinations, delusions and severe depersonalization and de-realization (feeling as if I was a different person and that nothing was real). I went 2 weeks without any sleep at all and became very, very suicidal. I had to be watched 24/7. My perception of time and space was distorted. I was angry. I had no positive emotions whatsoever for many, many weeks.

Acute withdrawal lasted for about a month. After that, my symptoms were somewhat less severe, though still miserable. I was always in enormous amounts of pain. The pain in my chest was so bad that it felt like I’d broken some ribs. In fact, I became convinced I had done so somehow, so I insisted on getting X-rays, which showed nothing. Due to the fact that my immune system had basically collapsed, the pneumonia I had only partially treated came raging back much worse than it had been before. I had to take antibiotics. Killing the infection caused me to cough so hard that I dislocated my ribs repeatedly.

Sleep returned gradually, first 2 hours, then 4, then 6 and 7. I had to sleep propped up with many pillows because of chest and shoulder pain, and because my rapid heart rate made me more uncomfortable and anxious when I was flat on my back. Every night I had to tell myself these words “you’ve slept through worse, you can do it.” And most nights it helped.

One year after my Xanax cold turkey, I was feeling much better, though not completely back to myself. I was left with lingering breathing problems and severe muscular tension. My ability to handle stress was greatly diminished. But I had survived and I was functioning relatively normally. I was immensely proud of myself for enduring and healing from such a horrific experience, and I thought I was much wiser for it. If somebody had told me at that time that 4 years later I would put another benzodiazepine in my mouth, I would not have believed them.

Incredibly, about 4 years later I actually did take another benzo after being hospitalized for insomnia-induced depression. But this time I was a bit wiser. Not a lot, mind you, just a bit. I at least was aware that I would need to taper off of it and must not go cold turkey if I valued my life.

The beginning of my taper was horrific. The first few unwisely large cuts had made me incredibly ill. I always felt like I had swallowed battery acid. I was on fire from my mouth all the way to my stomach. I was not sleeping again. I was in all sorts of mental and physical agony. I again experienced the utter horror of derealization and depersonalization. I was so dizzy and exhausted from insomnia that I couldn’t drive. I was bedbound for weeks.

That began to change after I wisely took some advice I received on a withdrawal support forum and spread my dose out a little. I also slowed my pace, holding my dose whenever the cuts became too difficult to handle. I gradually began to become marginally functional. As I got lower and lower in dose, I began to feel more and more stable.

By the end of the taper, which took an incredible two years, I was much healthier and almost completely functional. It’s been about 7 years since that time. Unfortunately, I cannot report that I’m back to normal. I’m mostly happy and functional, but I am much more prone to insomnia, anxiety and depression. I am much less resilient and more susceptible to life stress than before I ever took a benzo. I don’t know if this will ever change.

Here is what people need to understand: out of control benzo withdrawal can have severe, lasting consequences. Neither of my withdrawals were handled properly by my doctors. The first was an extremely dangerous cold turkey, and the second started out very badly because of the foolish advice of my doctor, who wanted me to complete my taper in two months. If I had listened to him, I would have been almost as sick as I was with the first withdrawal. Fortunately, I wised up in time to save myself any more agony and found a prescriber at a mental health facility who was willing to allow me to taper at my own pace.

Learning to taper is not effortless. It takes skill and knowledge. If anyone reading this needs to taper off of a benzodiazepine, I recommend carefully reading the Ashton Manual, which can be downloaded for free from the internet. From it you will learn the basics of what benzodiazepines are, what they do in the body, and how you can safely taper from them. Then present this manual to your prescribing physician. If he/she is not willing to help you taper safely, which unfortunately is incredibly common, find another doctor. It could mean your sanity or even your life.

Hills and Valleys

Photo by Kristin Kokkersvold via Flicker Creative Commons

Photo by Kristin Kokkersvold via Flicker Creative Commons

The rollercoaster ride that is my life just got a lot wilder. A week and a half ago I took the plunge. I finally stopped taking Temazepam, which I had tapered very slowly over the course of 2 years.  The dose of medication I was taking when I quit was miniscule: 1/4 of a milligram.  Some nights I’m sure that even though I dutifully took my dose, the drop of water I consumed actually contained no medication.  It was time to quit this nonsense.  You would think that after a two-year turtle-taper down to a tiny pinch of powder, finally coming off would be anticlimactic. That’s what I thought.  Apparently I was wrong.

My body knows something is missing.  My muscles tighten around my head and neck like they are trying to perform a facelift without surgery.  Sometimes I feel like my head is full of helium, that it’s about to launch itself into the stratosphere.  And with the helium-head comes a feeling of altered perception you would have to experience to understand.  Some people say it’s like a bad acid trip.  I wouldn’t know, as I’ve never taken acid.  It really bothers me, though, that I know how that feels.

And the pain!  In an earlier post I wrote that I felt that I had been abused and beaten in my benzo prison.  The pain is why.  Searing nerve pain that darts across my chest and makes me afraid to breath.  A tight ache in my jaw that never goes away.  And hatchet-head.  That’s my nickname for the migraines.

I don’t like revisiting these symptoms.  It scares me.

So, I cope with techniques that I learned long ago when I suffered much more than I do now.  I use the good old affirmations, the same ones that pulled me out of my darkness back then.  I stretch and walk and meditate.  I breath.  I stop the mosquito-like negative thoughts that threaten to pull me into a pit of mental suffering.  I love on my kids, my sweet pup, and my husband.  I write and write, sometimes fast and furious, sometimes slowly and thoughtfully.  I take deep gulps of lilac scented spring air.  Yes, I will be fine.

And sometimes I really am fine.  Sometimes I’m on the crest of a hill instead of in a dark valley.  Sometimes I can’t help but grin, tears of joy making tracks down my cheeks.  I’m free!  It’s Spring and I have my whole drug-free life ahead of me.  It will be a good one, I know.

My Story

How I Slew the Benzo Beast and What I Learned in the Process

Metamorphosis