the trouble with benzos

Once in a while, I see glimpses of my son acting normal. By normal, I don’t mean he sees well or walks right or speaks words or is free from seizures. I mean that there are moments, typically soon after his late-afternoon dose of THCA cannabis oil, when he is calm and happy, when he doesn’t frantically snap his fingers, when he isn’t a raving lunatic, isn’t hyperventilating, isn’t poking the hell out of his eye, humming repetitively or madly rubbing his head. In these rare moments he is serene and happy, and I wonder—once he is completely clear of his benzodiazepine—if he’ll begin to be like this more often, be free from pain, discomfort, anxiety and malaise.

The trouble with benzos is manifold—so much so, that it's hard to know where to begin.

For starters, benzodiazepines are not designed to be used long-term, because habituation can happen rapidly, in some cases after just a few doses, causing the body to require a higher dose to maintain their desired effect. In other words, if someone is taking benzodiazepines for sleep or anxiety or seizures—common conditions for which benzos are regularly, and often cavalierly, prescribed—they might, over time, experience insomnia or anxiety or, like in Calvin's case, a re-emergence of seizures, requiring an increase in dose to dampen them again. For people whose brains habituate to benzodiazepines, this pattern can be unsustainable, eventually reaching harmful levels of the drug causing side effects that become intolerable.

Like other antiepileptic drugs, the side effects from benzos are myriad. They include, but are not limited to, headache, nausea, malaise, dizziness, double-vision, blurred vision, drowsiness, weakness, slurred speech, drooling, lack of coordination, ataxia, seizures, anxiety, insomnia, anorexia, hallucinations, gastrointestinal upset, trouble swallowing, respiratory suppression, agitation, restlessness, irritability, tremors, panic attacks, vomiting, sweating, flushing and psychosis. These side effects can also be experienced when weaning from benzos, particularly if withdrawing too swiftly.

Another problem with using benzodiazepines is the fact that many, perhaps even most, neurologists appear to be unaware of or misinformed about proper weaning. I've heard countless stories from patients and parents who tell me that their neurologist recommended twenty-five percent dose reductions, pausing only a couple of days or weeks between each large decrease. This rapid of a wean can result in agonizing, dangerous and protracted withdrawal symptoms including status epilepticus. In my research, I've come across information about a syndrome I wish I'd known about before putting Calvin on any benzos: Benzodiazepine Withdrawal Syndrome.

After some in-depth research about the syndrome I began Calvin's wean from clobazam, aka Onfi. Rather than rely on Calvin's neurologist, I relied on the Ashton Manual—which thought it doesn't name clobazam, it details other benzos and how to withdraw from them—and on experienced parents' advice on how to wean safely. Thankfully, one parent, Paige Figi, told me to switch Calvin to the liquid form of Onfi in order to manage the fractional decreases that would otherwise be impossible with pills. Calvin has been weaning from the drug for over two years during which I have quickened, slowed and paused the wean according to how well or poorly Calvin seems to respond; we have at least one more year to go.

At first, the wean was torture because we'd done it too quickly. Calvin experienced excruciating side effects, at times manic, hyperventilating and insanely finger snapping in his bed for hours on end. On a handful of occasions he writhed and cried in pain much of the night as if he were passing a kidney stone. During these times I couldn't help but recall what Stevie Nicks had said when she came off of Valium, another benzo: "It felt like my brain was on fire." Another time, Calvin had a serious cluster of seizures that did not respond to three emergency medications, landing us in the hospital after a seven-year hiatus.

The trouble with benzos is that many physicians prescribing them seem indifferent to their dangers and side effects, unaware of benzodiazepine withdrawal syndrome and unschooled as to how to wean them safely and effectively. As a result, patients risk addiction, dependency and, perhaps, painfully protracted withdrawals.

Having said all this, I do know that for some people, benzodiazepines are the only drugs that work to control their seizures and in some serious cases, they can be lifesavers.

Luckily, it appears that for Calvin, cannabis is a lifesaver. It seems to have mitigated the withdrawal side effects he experiences. It has seemed to help him sleep better, calm his body, and we believe it has helped limit the number of seizures during his benzo wean; his grand mals have held pretty steady at an average of just over four per month (though I have also fine-tuned his treatment in the wake of those grand mals by giving him extra Keppra, and/or extra THCA and periodic administrations of Diastat to limit seizure clusters).

Now, with over ninety percent of his clobazam dose gone, Calvin is calmer, more focused and generally happier. Since beginning his wean, his expressive and receptive communication has improved. Best of all, we don't see as many crazed episodes like the one below, a daily occurrence before beginning the wean. So, it would appear that with each decrease in benzodiazepine, our kid gets a little bit closer to what we might think is his normal.

Calvin experiencing the effects of too many antiepileptic drugs and withdrawal from benzodiazepines (You Tube video).