PART 2: TAKEN AS PRESCRIBED

By
Helen M. Davis

Mike was kind. After introducing himself, he then asked me what had brought me in to see him. I then read from a paper I had written describing how I felt, and he sat there and listened. He actually listened! He made me feel as though what I had to say mattered and I liked him immediately. It was decided that we would meet for an hour at a time for three sessions and, after that third session, we would see how we felt about working together. I already knew. Mike was the therapist for me.

I also saw a rehabilitation physician in September. He determined that not only would I need to see a physical therapist, I also more than likely would need to wear a brace on my left leg as I could barely clear the floor with my left foot. I was dismayed. Was a wheelchair in my future? The rehabilitation physician didn’t think so, but who knew for sure?

I began physical therapy, and I was given a series of exercises to do at home. The physical therapist also fitted me with a sample brace and had me walk around in it. Sadly, I could feel quite a difference. I had to agree with him when he recommended that I wear braces on both legs and a pair was ordered. I also saw the rehabilitation physician for a follow-up and was relieved when I learned I would not have to see him again. I had so many appointments and I loathed them all save for seeing Mike.

Then came Christmas, which I dearly loved. Once again, I was forced to go through the motions. I wanted so desperately to be able to feel joy, but it just wasn’t there. I tried to will myself better. Of course, this didn’t work. I tried to order myself to be better. This was an abysmal failure as well.

In January, I had my now biweekly appointment with Mike and after we shared about our respective Christmas celebrations, he stared at me and said, “I’ve been thinking about your anxiety, and do you think it’s possible that you are crashing on your Diazepam?” Crashing? I’d never heard this term before, nor had I ever heard of Diazepam causing such as I had been experiencing for so long.

Mike explained to me the cycle of withdrawal. Withdrawal, he said, is the opposite of what a pill is supposed to do. In my case, he suspected that I was going through withdrawal every morning after having Diazepam in my system all night. By the time I would be arising, the level of Diazepam would have dropped so that I was experiencing symptoms. One of the things Diazepam was used for was anxiety, therefore, withdrawal would include anxiety that didn’t respond to any sort of treatment. I was, as he put it, “classic.” I was also highly intrigued. For the first time in nearly a year, something finally made sense.

At home, I armed myself with the phone book and I began calling different pharmacies in the area. In all, I spoke with about six different pharmacists and all of them agreed that Diazepam was the likely culprit in this unwanted and much despised drama. One pharmacist even went so far as to describe a dosage schedule for getting off this drug and mentioned the word taper, the first I’d heard it used in this context. Much to my horror, I also learned that Diazepam is to be taken for no more than two weeks. I had been taking it for more than two decades. I was placed on it at the age of 27. I was now 53.

More determined than ever, I then called my primary care physician’s office, and an appointment was scheduled so we could talk about what I had learned. When the day came for me to see him, I made sure to bring my notes. If Diazepam was truly the culprit in all of this, then I wanted off it now! My physician agreed that Diazepam was very possibly responsible for my condition, and he was amenable to my going on a taper. This was a Thursday and he sent in a new Diazepam prescription for 2 mg. tablets so I could begin tapering. I was going to win this war.

My Diazepam taper began on Monday, January 21st. I started at 10 mg. with a decrease of 1 mg. per week. I figured I could do this. I knew I had to do this. At a sister’s suggestion, I also began keeping a chart of the days and the dosages along with comments/reactions to monitor my progress. The first week, at 9 mg. instead of 10 I didn’t really feel a whole lot of difference but, by the second week I was feeling increased anxiety and nausea.

By week three of the taper, withdrawal had pretty much consumed me, and the worst was yet to come. The anxiety was unbearable, I was nauseous, and I was so tired. I was also experiencing shakiness. Yet, I somehow managed to take my dog to the vet and swim some laps on the same day, though I’m not sure how save for a strong belief that I could and would get through this.

Week four brought with it increased shaking, anxiety, depression, nausea, lethargy, and fatigue. I was scared and I felt horrible. I began to wonder if I had done something wrong and was being punished. I hated withdrawal and I hated knowing what a hold this drug had on me. It made me angry to think that I had been allowed to take this drug without oversight for so many years. How could this have happened? Yes, perhaps I should have read the papers from the pharmacy more carefully when I picked up my prescription but because I had taken it so long, I trusted that it was okay. I wanted to die. I truly wanted to die.

Week four heralded the end of my association with the psychiatric office. With my primary care physician’s blessing, I cancelled my next appointment with them and closed out my case. I never wanted to walk through those doors again. I wanted to forget ever having had to go there. It was ironic, actually. Had we met under different circumstances, I had a feeling the psychiatric doctor and I could have been great friends.

By the fifth week, I was not only shaky, etc., I was also tachycardic. Things got so bad in fact, that I ended up being rushed to McKenzie-Willamette’s emergency room where I was whisked back to a bay and electrodes were slapped onto my chest and sides to get a reading of my cardiac activity. My heart rate was a whopping 120 bpm, and my blood pressure was also elevated. Blood was taken for further testing. When it was determined that my heart was fine, I was given my evening 2 mg. dose of Diazepam. Within a half an hour, my heart rate had slowed as had the shaking. I was ready to call it quits. I was ready to go back to 10 mg. of Diazepam and forget about the taper, but I knew that this was not an option.

When I saw my primary care physician for my next follow-up, he also suggested that perhaps the taper was too difficult as I had been on Diazepam for so long. Perhaps it would be better to end things and I could go back to the full dose. I said no. Where I had wavered the night of my visit to the emergency room, I was now resolute. I was halfway through the taper now, I told him. I hadn’t come this far to turn back. I was going to see this through to the end. I could do this. I would do this.

So, I continued the taper and struggled with withdrawal. I felt worse than ever. Life became for me an existence in which I would repeatedly ask the sister with whom I live, “Why is this happening to me? Why did this have to happen?” Of course, she had no answer. I would moan about feeling “so alone” in this battle as I knew of nobody else who was going through this that I could turn to. I spent entire days on the sofa, tired, weak, shaky, tachycardic with no strength to do anything except wish to die. Other than losing my parents 13 months apart, this was the most difficult thing I had ever done.

The end of week seven, however, brought forth my introduction to a window of wellness and a glimpse into what life could be post Diazepam. At this point, I had started taking Propranolol, a beta blocker that is used to treat high blood pressure, irregular heartbeats, shaking and other things such as anxiety and hyperthyroidism. I was using it to control the anxiety and the shaking that would grow worse as the taper neared an end and my body and my mind begged for more Diazepam. It was disturbing to know how dependent I was on a medication I had taken as prescribed, and I regretted ever having allowed this demon of a pill to have passed through my lips.

Five days after starting Propranolol I felt better. The morning began more easily than usual, and I began to feel that perhaps there was hope. I began to wish this window of wellness was an overhead door. This continued into week eight and even though the anxiety was still there though not as bad, and I was still shaky, I thought that perhaps I could do this, perhaps I could survive this taper after all.

Alas, by week nine, I was back in the waves of withdrawal and this time it included tingling in my limbs and buzzing in my torso as well as confusion and vivid dreams aka nightmares. I awakened not knowing where I was and could not remember prayers I had recited daily. I was unsteady on my feet, and I was scared. I would soon be jumping off. What would happen next? Could I endure not having even 1 mg. of Diazepam?

On March 24th, 2019, I took my final 1 mg. of Diazepam. The taper was officially over. I had made it. My body, however, protested the loss of the drug that it had come to depend on and I was so very weak. I wondered when I would ever reclaim my life. Adding to my woes, I developed a runny nose, another withdrawal symptom. It was nasty. One would have thought I had developed an upper respiratory infection, but it was only my body reacting. I also got to experience the sensation of an internal tremor that made me feel as though I were strapped to a washing machine that was in a perpetual spin cycle. At other times, I felt intense buzzing as though I were hooked to an electrical socket. Often, this buzzing was so bad it was like having a colony of bees crawling about beneath my skin. This, I learned from Mike, was my central nervous system becoming fully awake after two plus decades of dormancy. Parts of my brain were awakening as well, which led to photosensitivity, even with darkened lenses.

By the second week of April, I was feeling better. I still had a way to go, but the internal tremor and the buzzing had come to a stop for the most part. So had my runny nose. I had won the war and I was reclaiming my life, one without diazepam and one where I would finally get to fully live. The darkness that had enshrouded, enshrouded my family was beginning to lift.

It has been four years and three months since I last took Diazepam, and my life is markedly different. I feel so much better in so many ways. I am stronger, my thinking is clearer. Those braces? They lay under my bed gathering dust because I no longer need them. I also no longer see my neurologist because I don’t need to. For all intents and purposes, I am healed.

Today, before I take a prescription, I ask questions and I insist on knowing why I am being prescribed a medication and what I can expect of it. I am not that naïve and trusting girl in her twenties anymore. I know better. It makes me angry to think of the time that was taken from me not just by a benzodiazepine that, as it turns out, I didn’t even need as I have not had a bit of spasticity since stopping it, but by those who wouldn’t listen to me as I described what was going on and instead threw more prescriptions or worksheets at me as if they would be a magic fix.

There are definite changes that need to be made. Prescriptions, in my opinion, should be written as a last step. The first should be listening to the patient and hearing what they say and, in some cases, such as mine, observing the pattern they may be divulging through their behavior. This means more time should be allotted for appointments so a patient can be heard. Patients should come first and foremost. Profits should be a distant second. Prescriptions should be gone over at least every six months if not sooner so that those that are suspect can be discussed and those that are no longer necessary can be eliminated. No more polypharmacy in which multiple doctors prescribe multiple drugs. Where pharmaceuticals are concerned, less is more.
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This is my story, but it is far from over. I went through a hell called benzodiazepine withdrawal and now I want this story to be heard. If I can help to keep others from suffering as I did, then my own suffering will not have been in vain. I want to educate, support, and reassure that yes, it does get better. I can do this. I must do this. I will do this. There’s no turning back now.