benzodiazepine withdrawal

Allergic Reactions or Iatrogenic Illness?

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Allergic Reactions versus Toxicity Syndromes

When I was twenty, I had an allergic reaction to a sulfa antibiotic. I broke out in itchy hives while I was taking the sulfa, but the hives went away as soon as I stopped taking it. I had no other symptoms nor lasting effects. I don’t recall whether or not I took Benadryl to help me recover, but I imagine that it would have helped if I had. It was clear at the time that I was having an allergic reaction to the sulfa antibiotic, but if I needed it to be verified, there are tests that could verify and validate that I am allergic to sulfa drugs.

Twelve years later, I had an adverse-reaction to ciprofloxacin, a fluoroquinolone antibiotic. For more than a year after I took the ciprofloxacin, I experienced muscle weakness and pain; autonomic nervous system dysfunction including loss of balance, inability to sweat, digestive dysmotility, dry mouth, and dry eyes; central nervous system dysfunction including memory loss, inability to concentrate, loss of reading comprehension, anxiety, and brain fog; a loss of energy (I went from doing crossfit to barely being able to walk through a shopping center); and changes in my personality. My symptoms ebbed and flowed, with some lasting for years. All my symptoms arose after I stopped taking the ciprofloxacin, and many increased in intensity long after the ciprofloxacin “should” have been out of my system. Neither Benadryl nor any other pharmaceutical I tried did anything to alleviate my symptoms. There are no tests that verify adverse reactions to fluoroquinolones, and no doctors seemed to have any clue how to treat my symptoms.

Do you see the difference in my two experiences? You should. One was a couple of hives and an itchy weekend, the other was a life-altering experience that changed my physical abilities, my thoughts, and even my way of interacting in the world.

My reaction to the sulfa antibiotic was an allergic reaction. My reaction to the ciprofloxacin was something different, and to categorize it as an “allergy” is a mistake. I am allergic to sulfa drugs. My reaction to fluoroquinolones (cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin, floxin/ofloxacin) was worse, and another exposure to a fluoroquinolone will likely lead to my permanent disability or death.

Fluoroquinolone adverse-reactions are categorically different from allergic reactions, rather, fluoroquinolone toxicity is a syndrome of multi-symptom, chronic illness that does not go away when administration of the drug has stopped. Fluoroquinolone adverse-reactions are similar in symptoms and scope to autoimmune diseases, fibromyalgia, ME/CFS, POTS, psychiatric illnesses, neurodegenerative diseases (like ALS and Parkinson’s), and other chronic, multi-symptom, illnesses that involve multiple bodily symptoms. Like many of those diseases, fluoroquinolones adversely affect gut health, mitochondrial health, liver health, neurotransmitter balance, mineral homeostasis, hormones, and more. Fluoroquinolone toxicity is a multi-symptom, chronic, syndrome, that, for many, is incurable. You can’t take a Benadryl to get rid of it. Some people recover (just like some people recover from autoimmune diseases), but there is no single path to recovery. 

Medically Induced Chronic Illness

Few people recognize that pharmaceuticals can cause multi-symptom, chronic illness SYNDROMES. They should though, because not only are millions of prescriptions for fluoroquinolones written each year (while rates of multi-symptom, chronic, mysterious illnesses go up, not entirely coincidentally), but fluoroquinolones are not the only drugs that cause multi-symptom, chronic, syndromes.

Benzodiazepine Withdrawal Syndrome

Benzodiazepines, and withdrawal from benzodiazepines, cause long-term illness that adversely affects the brain, and all aspects of the body. According to the Wikipedia entry for Benzodiazepine Withdrawal Syndrome,

“Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis,[1] and suicide[2].”

There are many sources for additional information about the multi-symptom, chronic, illness of benzodiazepine withdrawal syndrome throughout the internet.

Post Finasteride Syndrome (PFS)

Finasteride/Propecia can cause a constellation of symptoms known as post finasteride syndrome (PFS). The Post-Finasteride Syndrome Foundation describes PFS as, “Often life-altering, PFS is characterized by devastating sexual, neurological, and physical side effects that persist in men who have taken the 5-alpha reductase type II enzyme inhibitor finasteride.” Men suffering from PFS experience symptoms long after administration of the drug has stopped. It’s not an allergy, it’s a syndrome. 

Lupron Syndrome

After taking Lupron, many women reported experiencing the following effects: loss of libido, muscle and joint pain, gastrointestinal disturbances, bone loss, hair loss, dry and cracked skin, blood-sugar abnormalities, cardiovascular and respiratory problems, brain and nervous system problems, etc. Lupron use led to a multi-symptom, chronic illness–a syndrome. 

Essure Syndrome

There is a Facebook group with more than 31,000 members for victims of Essure, a coil that is implanted into fallopian tubes to serve as permanent birth control. Many of the women who are victims of Essure have multiple, autoimmune-disease-like symptoms. For many of them, the Essure causes a syndrome of chronic illness and pain.

Singular Syndrome

Montelukast/Singulair, the asthma medication, has been linked with Churg Strauss Syndrome, an autoimmune condition that leads to inflammation of the blood vessels in the lungs. Churg Strauss Syndrome is a serious, incurable, autoimmune disease. It’s not an “allergy” to Singulair, it’s worse–it’s the triggering of a serious disease.

Other Medication Induced Syndromes

Lariam/mefloquine can cause ongoing, severe psychiatric problems. SSRIs, hormonal birth control, statins, and other drugs, can also cause multi-symptom illnesses. In addition to fluoroquinolones, other antibiotics can cause long-lasting syndromes. There are cases of thousands of young men and women who are suffering from the severe adverse-effects of the HPV vaccine. Even over-the-counter drugs can have long-term, multi-faceted “side-effects.”

Iatrogenic Illness Is Neither Rare nor Allergic

These iatrogenic illnesses are not rare, and it should not be a foreign notion that pharmaceuticals can cause chronic illnesses–there are thousands of patient reports noting that various pharmaceuticals have led to complex and long-lasting illnesses, and many chronic illness symptoms are listed on drug warning labels. Yet, I still receive messages like this one:

“I saw the head allergist at the hospital and still here. He said no such thing as being allergic to Levaquin. No test to prove it.”

By that doctor’s reasoning, the only adverse drug reactions that exist are the immediate allergic reactions that can be tested for and cured with antihistamines or epinephrine. Unfortunately, that simply isn’t true. There are many adverse drug reactions that look more like multi-symptom, chronic, mysterious, incurable illnesses than allergic reactions. It’s time for a paradigm shift among patients and medical providers alike to recognize not only that many pharmaceuticals can cause syndromes of illness, and that many of the recognized multi-symptom, chronic illnesses can be linked to (caused by) pharmaceutical use.

Patients who are suffering from pharmaceutical caused syndromes deserve recognition. The people who have recognized illnesses that can be linked to pharmaceutical use deserve to know that those links exist. Just because a reaction doesn’t fit into the “allergy” model, that doesn’t mean that it doesn’t exist. Pharmaceutical-caused syndromes exist, and they are just as devastating, and often worse, than recognized allergic reactions.

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This article was published originally on November 22, 2016.

The Nightmare of Benzodiazepine Withdrawal

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Over four years ago I became ill with what was later diagnosed as Sphincter of Oddi Dysfunction (SOD), a rare defect of the biliary and pancreatic sphincters. I couldn’t keep food down for weeks on end and ended up in the emergency room and hospital several times. There, I was prescribed a low dose of a benzodiazepine (benzo) called lorezapam (generic for Ativan) in combination with an anti-nausea drug called ondansetron (generic for Zofran). The combination of these medications nearly cured the vomiting with the added bonus that I had something to take for the crippling anxiety I had due to chronic illness. Since I have been in recovery for nearly two decades, I was very concerned about the addictive qualities of benzodiazepines. A doctor, I can’t remember which one, changed my prescription to a longer acting benzo called clonazepam (generic for Klonopin). He or she promised me it was a benign drug and I had nothing to worry about. That ended up being a bold-faced lie. This drug, and all benzos, are anything but benign.

I thought I was doing okay on the medication. I didn’t get “high”. I never abused them or wanted to abuse them. Gradually, though, I began to develop a lot of weird symptoms, but I chalked them up to the SOD. By 2012, I was on a feeding tube, intravenous nutrition, and had acute pancreatitis, major abdominal surgery and two sepsis infections that landed me in ICU. During the second bout of sepsis I was given intravenous bags of a fluoroquinolone antibiotic called Levaquin, and subsequently, had a severe adverse reaction. The Levaquin rattled my nervous system and attacked my tendons. I later found out that fluoroquinolones are contraindicated in patients prescribed benzos. By late 2013 I was a sick mess from the never-ending fluoroquinolone toxicity symptoms and was experiencing what I later learned to be inter-dose withdrawal and tolerance issues from the benzodiazepines.

Benzodiazepine Dependence Versus Addiction

Before I talk about the horrendous withdrawal nightmare I went through, you must know there is a difference between physical dependence and addiction. The majority of people I have met coming off benzos are not addicted to their benzo like an addict seeking more and more, abusing them, and/or getting them illegally. Conversely, the majority who are prescribed benzodiazepines become physically chained to the medication to the point their bodies don’t know how to function without them. Your body can become significantly dependent on a drug, even those that are not controlled substances. This can happen with anti-depressants, anti-psychotics, and seemingly innocent blood pressure and cholesterol medications. I have been down this road with anti-depressants. I must be an ultra-sensitive person because anytime I tried to go off a medication—any medication—I had to taper slowly. All that being said, this is not an article about benzo addiction and, quite frankly, many rehabs mistakenly treat benzo-dependent individuals as addicts when they are not.

Why people become physically dependent on benzodiazepines has something to do with its effect on the neurotransmitter gamma-aminobutyric acid (GABA). Benzos bind to these receptors, creating a sedating, hypnotic, and anti-anxiolytic affect. Doctors are prescribing benzos more and more for off label purposes like inner ear disorders, nausea, bladder and pelvic disorders, and fibromyalgia and for long-term use. This practice is concerning as it is well-established in pharmacological literature that benzos are to be used short-term (less than 4 weeks) or only on occasion. The long term use of benzos and their effect on our bodies has not been well-researched. I had to learn about it all through other benzo users online.

My Benzodiazepine Withdrawal Nightmare

In September 2014 I decided I wanted to taper off the clonazepam. I had been on the same dose (two pills a day at the lowest dose they make) for three years. I was terrified the vomiting and disabling anxiety would return but I had a gut feeling I didn’t need them anymore and would be ok without them. I remembered a few people in my health support groups shared how they had a horrible time coming off benzos and recommended a support site called Benzo Buddies. Naively, I ignored their suggestion and went about my taper all wrong. How hard could it be?

I followed no set pattern. I chipped away at pills and dropped down to one dose a day which I learned the hard way was very bad because clonazepam’s pharmacological duration of action was 6-12 hours, meaning I didn’t have a steady amount in my system at some points of the day. This caused withdrawal symptoms because it is something called interdose withdrawal. During the first few months of my taper I experienced an increase in my body wide nerve pain I had had from the fluoroquinolone. Strangely, my teeth hurt terribly and never let up. I thought I needed root canals but when I got them it made the pain worse. Dentists could not explain the severe pain as x-rays were normal. I had a tooth pulled and now regret it, but the pain had been unrelenting. I had frequent urination and pelvic pain. By February 2015, five months after I began my taper, I started having severe pancreatic pain attacks. I thought it was my SOD popping up again but I had surgery for that. I didn’t think it had to do with the benzo. Months later I realized the pain subsided for a few hours after my daily clonazepam dose then resumed when the benzo wore off.

I continued to chip away. I had anxiety but the worst was that pancreatic pain. I finally relented and joined the Benzo Buddies forum and met several other people who developed pancreatic issues during a benzo taper or withdrawal. By July 2015 I decided I was to be done with this drug and completely stopped. I was only taking specks by this time but even the specks seemed to keep me from a lot of nasty symptoms. The weekend I stopped completely, my husband and I went to NYC for a recovery convention. I had vertigo so severe I felt like I was on a boat during the entire trip. I was nauseous, my ears rang loud, muscles ached, and of course my pancreas was worse than ever. I was in rough shape for the next 6 weeks. I did start to feel better but soon was plagued with panic attacks the likes I’d never experienced. I woke up every night at 3:00 a.m. drenched in sweat, in terror. Adrenaline surged through my veins.

I called the doctor. She said I had to go back on a benzodiazepine temporarily. I complied and took a very small amount once a day for a few weeks. My pancreatic symptoms flared to the point I nearly stroked out as the pain caused my blood pressure to double. I had to get off the medication again so I stopped cold turkey. After all, why on earth would I have to taper again? Well, I should have tapered because what happened to me is called kindling. Kindling (withdrawing multiple times) can cause a hypersensitization of the receptor systems and thus causing the nervous system to be hypersensitive. What ensued was a horror show.

The Hypochondriac Disease

Benzodiazepine withdrawal should be called the Hypochondriac Disease. You will feel like you are dying and so many things are wrong but most tests will show nothing is wrong with you, leading your doctors to believe you are crazy. I felt like I was having mini-seizures for an entire month. For several months I had severe thirst and electrolyte imbalances, erratic blood pressure, sweats, chills, nausea, dizziness, near blackouts/seizures, vertigo/boaty feeling, metallic taste, eye pressure and pain, pancreatic pain and damage (by October 2015 an endoscopic ultrasound showed I had damage and was diagnosed with chronic pancreatitis), bad bloat and gas (aka benzo belly), ear fullness/popping, weird stools, constipation alternating with loose yellow stools, food sensitivities, brain fog, depersonalization/derealization, inner vibrations, exercise intolerance, sinus pain that felt like brain freeze, complete intolerance to stress and overstimulation; blood sugars were either very high or very low (I am not diabetic). I pretty much felt like I had the flu every day. At about the three-month mark the fatigue set in. The fatigue was unlike anything I had ever experienced. I was bedridden a lot. I was so tired I didn’t want to drive and could barely take care of my 4-year-old son.  I never seemed to catch a break. When one symptom resolved another would pop up.

My doctors were useless as none believed that benzodiazepine withdrawal caused all of these symptoms or that it could last for months (for some people years). I had already gone down this road with them for the SOD and the fluoroquinolone toxicity I can’t blame them for being perplexed. I am here to say it is real and should be considered as a diagnosis for any mystery ailments. I have tried to warn others but it is difficult to convince anyone how horrible these medications are when they experience a “wonder drug” effect from them.

Feeling Better! There is Hope.

It has been nearly seven months and I am feeling much better. I started having “windows”–feeling normal–and “waves”–intense symptoms. That is actually a good sign that I am healing. I am down to only a few symptoms. Not everyone has the experience I had. Some go off and on benzos no problem. For some of us withdrawal is a painful syndrome that cannot be resolved with a quick cold turkey or month-long stay in rehab. Some are quite ill for years. This is not like opioid, alcohol, or any other type of drug withdrawal. It’s just not that easy and my hope is doctors learn from their patients.

Even if you have successfully and easily gone off them in the past, I strongly suggest anyone who wants to taper off go to the Benzo Buddies site and read the various methods of tapering. Educate yourself. The most common taper method is the Ashton Protocol. Dr. Ashton ran a benzo withdrawal clinic in the U.K. and has probably done the most research of anyone on benzos and how to safely get off them. Always talk to your doctors about the risks of any drugs before agreeing to leave their office with a prescription. I never thought a legally prescribed medication could do this to my body. I now have a medic alert bracelet that states I am allergic to fluoroquinolone antibiotics and benzodiazepines.

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This article was published originally on Hormones Matter on April 25, 2016.