+100%-

( A word of caution; benzodiazepines are successfully used by many people with ME/CFS and FM.  Like all drugs, though, in the wrong person they can have negative effects, and, every now and then, someone who is very sensitive to them shows up. Despite taking only small dose of Klonopn for a short period of time Stephen turned out to be such a person. His story is to put forth to a) demonstrate that in rare instances these drugs can have very negative effects and b) provide help to those attempting to withdraw from them.)

My ME/CFS Story

I first became aware of ME/CFS or chronic fatigue syndrome in 2001 during my senior year in college when Dr. Patricia Salvato in Houston had told me that I had elevated immune response to the Ebstein Barr virus that is “in the range consistent with chronic mono or chronic fatigue syndrome.”  I decided to see Dr. Salvato, who sees all the fatigue and fibromyalgia patients in the Houston, Texas, area because my aunt had been diagnosed with fatigue and fibromyalgia by her.  I was born two months premature and had blood transfusions.  That fact combined with genetic predisposition probably set me up for fatigue.

My constitution was fairly decent at the time, but it was clear other kids my age could dance circles around me energy-wise.  Ultimately I managed to graduate from law school in 2007 and pass the Texas bar examine to become a lawyer.  Anxiety and stress from the job over time wore me down further, and as time went on I was physically unable to do more and more; in particular, my tolerance to exercise lowered further.

I was sure I could regain a large amount of my health and energy as soon as I would get a break from work; however, at one point a series of events conspired to throw me into a dangerous tailspin.

It Begins….

Almost three years ago, after listening to an interesting piece on National Public Radio about the concentrated nutrition in some foods that our ancient ancestors ate such as dandelion greens, I decided to buy some and juice them.  I purchased red dandelion greens and juiced them.

The following night after drinking the juice I could not sleep, felt extremely hot and experienced slight twitching.  Unaware that the juice was to blame, I foolishly repeated drinking the juice for two more days resulting in the same reaction.  My sleep returned and the twitching stopped after discontinuing drinking the extremely concentrated juice, however, I began to experience snowballing insomnia over the following month.

Insomnia and Lunesta

drugs for chronic fatigue syndrome

First there was Lunesta

Over time I felt that I needed to take action to get more sleep in order to function better for work so I had Dr. Salvato write a prescription for Lunesta.  I tended to get more sleep taking Lunesta but during the day I felt strangely detached from the world.  Over the course of the 17 days that I took Lunesta, I also began to experience bouts of intense fear for no apparent reason, and hyperacidity in my stomach resulted in me going to the emergency room for the first time since I was 4 years old.

Subsequently, I discontinued Lunesta.  The intense bouts of fear lessened as did my stomach pain but my nerves were shot. Before taking Lunesta I was distressed and tired over my trouble sleeping but after Lunesta I developed fear of not sleeping and some restless leg syndrome as well.

My fear was compounded by my natural oriented gastroenterologist, who said that I was “very ill” and she wanted my cortisol and DHEA tested.  Unfortunately, my anxiety induced internet searching led me to some websites hosted by nonconventional medical doctors who claimed that if your cortisol and DHEA levels are off, then “you will never sleep again.”  (That isn’t true by the way)

Eventually my test results for cortisol and DHEA came back mostly normal. My gastroenterologist agreed that my nerves were my problem and said she would defer to “whatever my psychiatrist wanted to do.”

Klonopin (Clonazepam) For Insomnia

Klonopin chronic fatigue syndrome

Then Klonopin

The psychiatrist quickly told me that the vast majority cases of insomnia are caused by anxiety and prescribed the benzodiazepine tranquilizer class drug, Klonopin.  When I raised a concern about whether Klonopin is habit forming and appropriate for long term use, he quickly responded saying, “I have tons of patients who have been on benzos for years, and they don’t develop tolerance to them.”

I took 0.5 mg of Klonopin each night –  not considered a very high dose. For the first two weeks I noticed my dreaming had stopped, and that I and woke up in the morning feeling surprised that I had been asleep for 7 hours. I felt some relief for the extra sleep but a bit emotionally numb as well.  At the time the trade off for less anxiety and more sleep seemed worthwhile, however, in two weeks time I began waking up more frequently at night, and I began to experience more daytime sedation, exhaustion, and physical agitation (tension and heart palpitations).

Withdrawal Attempt #1

I knew I ultimately needed to stop taking Klonopin.  I managed to reduce to 0.25 mg, but every time I tried cutting the pill down from 0.25 mg to 0.125 mg I developed worsening agitation, heart palpitations, and exhaustion.  My functioning at this point was clearly worse when trying to taper off of the drug than it was before I ever started taking it.

After seeking a second opinion, a second psychiatrist told me that 0.5 mg Klonopin is “nothing to worry about”.  I began to be more concerned about his opinion when I noticed, on more than one visit, him taking pills out of  a prescription bottle and popping them in his mouth  When I asked him what he was taking he said, “They’re vitamins Stephen.  I take every vitamin there is.”

Knowing that he probably had much firsthand experience taking psychotropic drugs himself, I asked for his opinion about benzodiazepines.  He said, “I personally don’t like benzos because they make me feel anxious and depressed.”  I was feeling the same way, but I didn’t know how to get off the drug.  I told him that “I think getting off this drug could be the hardest thing I do in my life.”  And he replied, “Maybe”, but did not seem concerned.

Withdrawal Attempt #2

Agitation

Instead of feeling calmer on Klonopin, Stephen felt more agitated

The psychiatrist eventually told me that I could “simply stop taking the drug” if I wanted as there would “be no withdrawal from 0.5 mg of Klonopin.”  Boy was he wrong about that!  I experienced anxiety and hyperventilation like I had never experienced before in my life.  After three days and three nights of cold turkey withdrawal, I had to call it quits and get back on the Klonopin.

Subsequently, I was fortunate enough to see neuropsychiatrist, Dr. Garima Arora, who said that benzos are not suitable for long term use and “only mask symptoms.”  She stated that I would have to be tapered off 0.5 mg of Klonopin and that I could not just stop taking the drug cold turkey.   She lamented that she had seen pregnant women taking this drug, as clearly it could harmful for a developing fetus.  Unfortunately, she could not provide for any better advice for tapering off the drug.

Withdrawal Attempt #2

My growing worry lead me to checking into the Menninger Psychiatric Hospital in Houston to help me withdraw from Klonopin.  Dr. Robert Albanese at the Menninger told me that he had previously spent 20 years working for the VA Hospital.  He said that his “first 10 years there were spent getting people hooked on benzos” and that his “subsequent 10 years there were spent trying to get people off benzos” because they had learned that “in the short run benzos work beautifully for anxiety, but in the long run tend to cause worsening anxiety and depression.”  He said that he had witnessed people’s depression clear after withdrawal from benzos.

Unfortunately, I was unable to successfully withdraw from Klonopin at the Menninger Hospital.  Fortunately my new therapist told me about a client of hers who “went through something similar.”  He was helped by a benzodiazepine withdrawal expert physician, Dr. Raymond Armstrong of San Antonio along with the support of the people at a nonprofit organization that helps people get off psychotropic drugs called “Point of Return”.

In a phone conversation with me, the gentleman related his hellish experience with Ativan, a benzo class drug.  He too had checked into the Menninger Psychiatric Hospital at one time after attempting to taper off Ativan too quickly.  He had become delusional and extremely anxious during this time.  Like me, he was extremely sensitive to these drugs.  After checking out of the hospital, with the help of Dr. Armstrong, he was able to successfully withdrawal from Ativan.  A few months more thereafter he fully recovered from his extreme anxiety state.  He said, “All I can say is, it’s a miracle, and I highly recommend calling Dr. Armstrong.”

Withdrawal Attempt #3

In January of this year, I became a patient of Dr. Armstrong.  He is a cardiothoracic surgeon who experienced firsthand the horrors of a protracted withdrawal from Valium in the 1970’s.  Experiencing extreme agitation himself (as if worms were crawling under his skin), he decided to try to help people in the same predicament.

subset of 1

A few people react very negatively to benzodiazepines

Dr. Armstrong says that there is a large bell curve of where people can fit in terms of their response to benzodiazepines.  He said, “On the far left end side of the curve are those lucky souls who have the constitutions of an ox and can get off benzos without too much difficulty.  On the other far right end of the curve are the most sensitive people in the world who cannot tolerate more than a 3% reduction of the drug in a week’s time.”  A 3% reduction of Klonopin (or any other benzo class drug) cannot be achieved by pill cutting.  Pill cutting does not allow for such a gradual or precise reduction.

For this reason, Dr. Armstrong prescribes a liquid compound of the drug dissolved in almond oil.  The liquid suspension is measured in an oral syringe. Unfortunately, people trying to withdraw from benzos on their own by crushing pills into water and trying to taper down using such experimental home practices may be setting themselves up for failure.  Benzodiazepines are not water soluble and only dissolve evenly in an oily solution.  In addition, the pills have fillers in them that prevent even distribution of the drug once they are crushed.

Dr. Armstrong also emphasizes the half life characteristics of each benzodiazepine drug, i.e. how much time elapses before half of the drug is eliminated from the body.  In Dr. Armstrong’s experience, in the vast majority of people Klonopin works on a 12 hour half life, i.e. in 12 hours your previous dose is reduced by a factor of about 50%.  He notes that most chronic benzo users cannot tolerate more than a 50% reduction of the drug in a day’s time.  For this reason, he recommends that people taking Klonopin split their dose and take it every 12 hours as opposed to one time per day. Dosing twice per day allows for a much more even drug concentration in the users brain.

Dr. Armstrong refers to benzo withdrawal expert (and internet phenomenon in the benzo withdrawal world, now retired) Professor Heather Ashton of the United Kingdom – Professor Ashton states that withdrawal from benzodiazepines should be done very gradually, and over the course of many weeks or months.

However, as opposed to Professor Ashton, who recommends that patients switch to Valium (which is available in smaller dose pills), Dr. Armstrong points out that such method still involves pill cutting which is imprecise.  Additionally, although in the same class of drugs, many people may not be able to switch to Valium because they do not tolerate it for a variety of reasons.

It is very important to note that no one and no physician can know how sensitive a person will be to the side effects of benzos when initially prescribing the drugs.  A person can become dependent on the drug before experiencing tolerance but may not realize dependency until trying to discontinue it.  Dependency can emerge in as little as one week of taking the drug on a daily basis.

Moreover, a person can experience withdrawal symptoms after developing tolerance to the drug while taking the same dose.  Probably the first subtle sign of tolerance to the drug is reemergence of dreams during sleep.  This is a sign that the brain has begun compensating for the drug’s effect.

Benzodiazepines, Sleep and Depression

People often take benzodiazepines for sleep; however, while the drugs do increase total sleep time (mostly in light stage 2 sleep), they can dramatically reduce the time spent in Deep Stage 3 sleep.  For this reason, a number of doctors believe that benzodiazepines can worsen sleep. (Studies indicate that deep sleep is eventually restored after withdrawal from benzodiazepines.)

Benzodiazepines work by increasing the effect of the neurotransmitter, GABA.  They do this by enhancing the activity of the GABA receptors in the brain.  In most cases, the brain will respond by removing GABA receptors to offset for the imbalance caused by the drug.  Unfortunately, this can leave the brain in a state of hyper-excitability when the drug is removed.  Few psychotropic drugs alter brain functioning to the extent that benzodiazepines do.

klonopin and sleep

Klonopin does increase sleep time but it may decrease the amount of time spent in deep sleep

No one with a personal or family history of depression should take benzodiazepines.  Similar to alcohol, benzodiazepines depress central nervous system activity and can worsen depression.  Unfortunately, unlike alcohol which has a definite withdrawal period (2 to 3 days), withdrawal from benzo’s and the symptoms associated with it, can last weeks or months.  Dr. Armstrong said that the best way to minimize or eliminate the risk of protracted withdrawal syndrome from benzodiazepines is a very gradual and precise taper from the drug.

Anyone seeking to taper off benzodiazepines should not do so without the help of a professional.  But that is the problem.  Even those doctors that realize the dangers of long term benzo use do not know how to withdraw people who are sensitive to these drugs.

For those going through hell and back due to benzo drugs, there is help and there are solutions.  For those not so sensitive to benzos, there still may be important factors to consider in making the decision to withdraw.  As people get older, for instance, their sensitivity to benzodiazepines increases as does their risk of delirium, falls, fractures from falls, and death.

An Anticholinergic Drug as Well

Additionally, although technically not in the anticholingeric class of drugs (such as antihistamines) benzodiazepines do appear to have anticholinergic properties.  This means they can inhibit (or lower) the action of the parasympathetic nervous system by blocking the binding of the neurotransmitter, acetylcholine, to its receptor in the nerve cells.  Many people with ME/CFS and/or fibromyalgia may have  autonomic nervous system problems.

The effects these anticholingeric drugs have on the nervous system dysfunction depends on many factors including their pharmacological action and how people metabolize the drug. I believe the possibility that anticholingeric drugs may be counterproductive in persons with ME/CFS/FM should be investigated further.  That idea suggests, however, that a drug taken for symptomatic relief could actually be worsening the illness in some ways.

The literature provided by the drug experts at the Point of Return organization states that benzodiazepines reduce the brain’s output of excitatory neurotransmitters, including norepinephrine, serotonin, dopamine, and acetylcholine – all necessary neurotransmitters for normal functioning and emotional well being.

Today

I can highly recommend Dr. Raymond Armstrong, M.D for people seeking help withdrawing from benzos.  So far with his aid, 8 weeks into my 40 week taper from Klonopin, I have been able to taper the drug safely by almost 25%.

I became especially intolerant to stress since being on Klonopin and that is still going on today.  I get slight morning woozy hangover from previous night’s dose of Klonopin.  I still feel a bit detached from my environment.  Colors still appear less vibrant than before Klonopin.

I still experience some physical agitation and occasional heart palpitations but that has improved a lot since Dr. Armstrong’s intervention. I attribute my success with Dr. Armstrong to a combination of getting properly dosed on the drug to prevent withdrawal, and the psychological boast of knowing I have the proper assistance.

cascade

Stephen’s sensitivity to Klonopin began a cascade of effects he is slowly recovering from.

Although Dr. Armstrong recommends twice day split dosing, I cannot tolerate dosing in the morning or else I get incapacitated (excessive sedation and difficulty moving).  As a result, I only dose the Klonopin once in the evening.  I start getting withdrawal symptoms by early afternoon the following day, including increased physical agitation, bodily aches, increasingly uncontrollable obsessive thoughts, and inability to relax.

To remedy this, Dr. Armstrong prescribes Verapamil to all his patients that only dose one time a day with Klonopin.  Verapamil is a calcium channel blocking drug used for blood pressure in most people, but in small doses, it can help prevent benzo withdrawal by slowing the body’s elimination of Klonopin.

It works quite well.  I had to figure by trial an error at what time in the day and how much Verapamil to take.  I find taking a one half tablet of Verapmil (20 mg) around 10 AM goes a long way in preventing withdrawal between doses, i.e. less physical agitation, obsessive thoughts, aches and pains, inability to relax and focus, shortness of breath.

Resources

Dr. Armstrong requires meeting with him in person for one visit at the emergency care center in San Antonio, Texas. The first meeting in person is required to satisfy regulators that a doctor – patient relationship has properly been established.  After the initial visit, all work with Dr. Armstrong is performed over the phone.  He spends whatever time is necessary to optimize the patient’s dose, taper, and give encouragement.  Most often he will ask the patient the original dose he or she took of the benzo and have that patient go back to taking the higher dose (if the patient tapered too quickly on his or her own).

Dr. Armstrong can be reached by calling his cell: 210-865-1440. He generally responds to calls within one to two days.

For all those people who seek to taper off a benzo, but cannot see Dr. Raymond Armstrong, I highly recommend calling compounding pharmacist Roy Katz of Custom Rx Compounding Pharmacy in Richfield, Minnesota.  Dr. Armstrong uses Roy to compound the benzos he prescribes.  Roy is also an authority on benzo withdrawal and will likely work with your doctor by directing your taper schedule.

Roy’s website is http://www.customrx.com/

I hope these resources can provide warning to individuals considering taking a benzodiazepine (or non-benzodiazepine hypnotic drug like Lunesta or Ambien which works similarly in the brain) on a long term basis, and hope to physically drug dependent people who need help withdrawing.  Isolated use of these drugs appears to be rarely problematic, but taking them for more than 3 consecutive days may be gambling with your health and well being.

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