Valium, Its Offspring and Polio Survivors
Valium is the great grandfather of the benzodiazepine (“benzo”) family of anti-anxiety drugs. Valium © (diazepam) has been on the market for 60 years. After its FDA approval in 1963, Valium became the best-selling medication from 1968 to 1982, with more than 2 billion tablets prescribed in 1978 alone. Valium was nick-named “Mother's Little Helper” after The Rolling Stones 60’s song about women becoming dependent on drugs to deal with the “drudgery and anxiety” of suburban living.
But Valium and its offspring do not necessarily cause dependence. In 2016, benzodiazepine misuse (i.e., use “any way a doctor did not direct”) was reported in 2% of the 31 million benzo users, with adults 65 or older reporting the lowest (<1%) misuse. ( See: Benzodiazepine Use and Misuse Among Adults in the United States.) https://ncbi.nlm.nih.gov/pmc/articles/PMC6358464/
So, with the less than 1% misuse potential in the back of our minds, lets look at the benzos that help treat polio survivors’ symptoms.
VALIUM © (diazepam)
Benzodiazepines not only effectively treat anxiety, but also treat muscle spasms, seizures and are used to provide sedation for medical procedures. Benzos work by stimulating receptors for the neurochemical GABA that “calms” neurons. For polio survivors, Valium's usefulness is in treating muscle spasms. Polio survivors, with their muscle imbalances, muscle overuse, leg length differences, unusual spinal curves and muscle overuse, are prone to develop painful muscle spasms, often in the back and neck.
At The Post-Polio Institute we found that a week or two of low dose (2.5 mg to 5 mg two or three times a day) could break the cycle of pain and spasm and then Valium could be stopped. As I will say several times below, we never had a patient abuse the drug. When patients got rid of the spasm and pain they also got rid of the Valium.
One important feature of Valium is its half-life (the time it takes for half the dose you've taken to leave your body) of between 20 and 50 hours. This can be a good thing since you don't have to keep taking the drug frequently during the day. But it can also be a problem because Valium is sedating and can keep you too "relaxed” for too long. So you have to be aware of how Valium and all benzos affect your attention and coordination before, as the package insert warns, you “drive or operate heavy equipment".
XANAX© (alprazolam)
Our 1985 National Post Polio Survey found that nearly two-thirds of polio survivors reported abnormal movements in sleep (AMS), with 52% reporting that their sleep was disturbed by AMS. The survey prompted us to perform sleep studies in polio survivors to document AMS. Patients demonstrated a variety of abnormal muscle movements: generalized random myoclonus (GRM), brief contractions and even ballistic movements of the arms and legs; slow repeated grasping movements of the hands; slow flexion of the arms; contraction of the shoulder and pectoral muscles; periodic leg movements in sleep (PLMS) with muscle contractions and ballistic movements of the legs; and PLMS plus restless leg syndrome (RLS). See: Abnormal Movements in Sleep as Post-Polio Sequela
Given the muscle relaxing properties of benzos, we trialed patients with AMS on a low dose of Xanax (0.5 mg to 2 mg) which eliminated the muscle movements. Some patients started with the 0.5 mg and moved up to 1 mg or rarely to 2 mg. But no one needed to go beyond 2 mg to get relief. In fact, once the lowest effective dose was found, polio survivors stayed on that dose, some of them for more than 25 years now.
Why did we choose Xanax rather than another benzo? Because Xanax has a half-life of between 6 and 27 hours. That means if you took Xanax 30 minutes before bedtime and slept from 10 PM to 8 AM, a half-life of six hours would have allowed your body to eliminate 66% of the drug, preventing you from being "hung over" when you got out of bed.
But the short half-life of Xanax can also be a problem if the drug is prescribed for anxiety. Xanax is known for its abuse potential specifically because it's short half-life requires it to be taken frequently to control anxiety. Why isn't this a problem for polio survivors with AMS? Because the drug is taken before bed. Whatever “relaxing" feelings Xanax might provide go unnoticed because you’re fast asleep.
KLONOPIN © (clonazepam)
We have found over the decades that severe swallowing difficulty is rare among polio survivors. Although swallowing problems are thought to be more common in diagnosed ”bulbar" polio survivors, 60% of Post-Polio Institute patients who reported swallowing difficulties did not have a clinical history of "bulbar" polio but did have slowed swallowing on a video barium swallow study. What's more, patients reported having spasm-like pain, a feeling that food was stuck in their esophagus behind the breastbone.
It was one of our patients who accidentally discovered that a very low dose (0.25 mg and rarely up to 1 mg) of the benzo Klonopin © (clonazepam), taken 30 minutes before eating, relaxed spasms in the esophagus and stopped food from getting stuck. Klonopin has a half-life between 18 and 50 hours, meaning it lasts at least three times as long as Xanax. So, as with Valium, don’t drive a car or operate heavy equipment before determining your body's response to Klonopin’s relaxing and sedating effects.
VERSED © (midazolam)
Versed is a benzo you may never encounter. Versed is used for sedation before procedures like a colonoscopy (often combined with an opioid such as fentanyl), preoperative sedation, for the induction of general anesthesia and for sedation of people who have an endotracheal tube and are in ICU on a ventilator.
Versed is given intravenously, not taken by mouth, and has the shortest half-life of all the benzo's, 1.5 to 2.5 hours. Even though the half-life is short you still need to be cautious about being sedated and even uncoordinated after being given Versed. If a colonoscopy takes half an hour you're still at least an hour away from just half of the dose being gone.
With any procedure using anesthesia, show your doctors/anesthesiologists/anesthetists the
ANESTHESIA WARNING CARD along with the article
Preventing Complications in Polio Survivors Undergoing Surgery or Receiving Anesthesia
“I TOOK XANAX SAFELY FOR YEARS, BUT MY DOCTOR SAYS NOW SHE CAN’T PRESCRIBE BENZOS”
Some state and federal government policies and regulations, as well as actions taken by practice plans and payers that follow the Centers for Disease Control and Prevention’s controlled substance guidelines, have been rather draconian. To find a balance between the excessive use of benzos and a potential overreaction in terms of heavy-handed restrictions, several pragmatic recommendations include refraining from suddenly and unilaterally discontinuing benzos in the millions of legitimate users, avoiding overly restrictive regulatory policies, but especially loosening restrictions at governmental agencies such as the Drug Enforcement Administration, state legislatures and medical licensing boards.
If you're having trouble finding a prescribing physician, contact your state Department of Health and medical licensing board to get copies of the latest legal restrictions on benzodiazepine prescriptions. Remind your doctors that benzodiazepine misuse (i.e., use “any way a doctor did not direct”) was reported in just 2% of the 31 million users, with adults 65 or older reporting the lowest (<1%) misuse.
See: Benzodiazepine Use and Misuse Among Adults in the United States.
For more information see Walking the Benzodiazepine High Wire. Kurt Kroenke, M.D., and Matthew E. Hirschtritt, M.D. Nov 2022 https://pubmed.ncbi.nlm.nih.gov/36321316/
Note: At the Post-Polio Institute we ALWAYS suggested that polio survivors treat the source of pain before asking for medications to minimize it.