November 17, 2015 at 2:07 pm

The A Word: A Personal Story

An incredibly strong, inspiring and wonderful person wrote in to MISSD.  Below is their story. This story is authentic and ever so necessary to share. Together, by raising awareness, we can prevent needless deaths and suffering.

It’s very hard for me to write about this. I rarely ever talk about experiencing to what I usually refer as the “A word,” otherwise known (or sadly, not so known) as akathisia because it is that scary, and I didn’t (knock on wood) suffer to the extent that has driven others to take their lives. But it is precisely those people and their loved ones who drive me to write about a traumatizing experience such as psychiatric drug withdrawal induced akathisia.

I began taking alprazolam (aka generic Xanax), a benzodiazepine, when, after a serious bout of insomnia due to severe situational anxiety and treating my body badly during grad school finals, I sought help from my general practitioner. “I have to be able to sleep. This is insane. How will I ever graduate without sleep?” I thought to myself. “I can’t fail now. Not after three years of hard work. I can’t.” I wish that I had prioritized my health above all, but I can only move forward while recognizing that I did the best I could with the information I had at the time.
I just felt fidgety at first, but in what seemed like a blink of an eye, I could barely sit still. It wasn’t anxiety for its own sake (although it did cause me tremendous anxiety). It wasn’t just restlessness. It was an unrelenting feeling of wanting to crawl out of my skin and wanting to scream. I couldn’t concentrate or sit down long enough to watch over five minutes of a television show. Whenever I felt the dreaded A- word begin, I became noticeably anxious, irritable, agitated with loved ones. For me, exercising did not seem to help because my heart was beating so fast it felt like I was already running. Sometimes contorting myself in strange positions gave me temporary relief, but I’d have to lie there completely still, craning my neck, or else that creeping, seemingly unbearable feeling reared its ugly head again. That is, until my brain calmed down enough after taking my daily, as prescribed dose of benzodiazepine.

You see, I suffered from an oftentimes little known syndrome as inter-dose benzodiazepine withdrawal. This is when my akathisia was the most pronounced. My akathisia crept up in between doses of my “benzo” because my GABA receptors (the receptors that help the brain absorb the calming chemical, known as GABA) were growing tolerant the drugs I was taking. Little by little, I felt like I was Jekyll turning into Hyde. I could only pray it would go away soon.

I want to be clear about something: A. this does not happen to everyone. B. this should not happen to anyone. C. it can absolutely go away, and D. withdrawal induced akathisia is a different beast than medication induced akathisia. I have heard tale of people on anti-depressantsas little as a few days experiencing akathisia. It is my (nonmedical, personal) opinion that people in that situation might do best to stop their new medication at once. If the medication is something one has been taking for a long period of time and this is a new symptom, then a slower, more gradual withdrawal might be best, in my humble, nonmedical opinion. Bottom line: if you are experiencing this, do your research and figure out what is best for your own situation. Nobody knows your body better than you.

If one experiences akathisia as a symptom of withdrawal, it can become more complicated. Then it can become a waiting game. I was lucky in that my inter-dose withdrawal akathisia got better, even if some other symptoms got worse. I eventually had to switch to a different benzodiazepine to taper because alprazolam just wasn’t meant for me. Horrible symptoms on a steady dose of that drug were a sign that I had to do something differently.

I continue to taper my benzo down slowly. Sometimes hints of akathisia creep up again, and when that happens, I know my body needs a break. I try not to let it scare me, as fear can add fuel to any fire. This is easier said than done because fear is a natural response to these feelings. I just try to remain educated now. I’ve learned that any medication, which has an effect on serotonin or dopamine receptors seems to have a risk of akathisia tied to it. Usually one can spot the risk if “increased suicidal feelings” is listed as a side effect. That’s not to say one should never take any drug, which has that little disclaimer. You might be fine. Just be informed.
I wish I never had to learn about akathisia. I wish no one had to learn about akathisia, but I still maintain that information is paramount. One group of people who I wish knew more about akathisia is doctors. Doctors hear my plea: do not dismiss us when we complain of increased anxiousness, of feeling like we cannot stand what is happening to our bodies, like we want to jump out of our own skin. These are not the mad rantings of someone who has lost touch with reality. These words are the direct result of the storm happening inside a person’s body. Please, please respect that and educate yourselves on this dangerous, life-threatening side effect. If you can do nothing else, just learn about akathisia. It is devastating and it is real.

It is my hope that awareness of this deadly side effect increases tenfold. Everyone deserves informed consent.