The benzo twilight zone

By Lins

I have been shaking and nauseous for two hours. My stomach cramps and burns. I am so awfully cold. I feel so horribly afraid, yet I don’t know what I am fearful of, or why. Until recently I had never experienced fear like this in my life. It feels unreal and yet at the same time it is very real. It totally consumes me. I cannot comprehend how people can live with such fear. I am so horribly nauseous and any movement makes it worse. I try to lie very still and take deep breaths to ease the nausea. But nothing seems to help. I feel that I cannot continue on like this. I begin to pray that God either ease this or let me die. Finally, after a couple of more hours the fear begins to ebb. The nausea is easing. I finally go to sleep for a few hours. I wake up hungry, but am afraid to eat, afraid of the return of the hideous nausea. Welcome to the benzo twilight zone. Welcome to my world.

About 18 years ago I was given a prescription for Ativan. I was not told that it was addictive. I was told I could take up to as much as 6 mg a day, if I really needed it. I was in therapy going through a rough time attempting to deal with childhood abuse issues. The Ativan really calmed me down. When the emotional pain was so intense that I had thoughts of suicide I could take an extra Ativan and it would dull the pain enough I could sleep. In a sense, to me, Ativan became a miracle drug….at least for awhile.

As time went on I had more panic attacks, but still they were relatively rare. I also was slowly developing symptoms of agoraphobia. And my anxiety was slowly increasing. These things happened so slowly that I was not aware of them at the time. Only later in looking back did I see the slow progression of the anxiety and agoraphobia.

In my 12th year of taking ativan the anxiety began to increase more rapidly. I could not figure out why. My life was stable. I had pretty much dealt with the childhood issues. Meanwhile, my symptoms of anxiety were becoming ever more severe. About 5 months into this I started taking another 1 mg tablet of Ativan in the late afternoon. That eased my symptoms, for a short time. I would take my first Ativan as soon as I got up in the morning. By noon I would have a headache and feel like a wound up coil inside. However, I would force myself to wait until 3 p.m. to take the second Ativan. Within in an hour of taking it my headache would be gone and I would be feeling much calmer. However, by bedtime I again was feeling quite anxious and my head was often beginning to hurt again. But I resisted taking a third tablet as I did not want to become addicted to any more than the 2 mg that I was already taking.

When my regularly scheduled appointment with the psychiatrist finally arrived, I explained to him how my anxiety had been increasing by leaps and bounds and I did not know why. His suggestion was to up the Ativan to 3 mg a day. I told him I really did not want to take anymore than I was taking. So he prescribed Zoloft for my anxiety. I returned to see him in a month. The Zoloft had not helped my anxiety. He increased the dosage. A month later it still had not helped, so he increased the dosage again.

Shortly after that I researched Ativan side effects online. It didn’t take long for me to find out that I had all the classic signs of tolerance and interdose withdrawal. I learned that it was suggested that a person crossover to Valium and taper from it because of it’s longer half-life. My doctor, however, did not want to prescribe Valium. So I started tapering the Ativan 1/8 mg a week. I had a lot of withdrawal symptoms, that were uncomfortable and not pleasant, but for the most part I was able to continue doing the things I normally did. My worst symptoms were jaw pain, headaches, and an inability to stop clenching my jaws. I had these daily. As I tapered, the lower my dosage of Ativan, the better I felt. The awful anxiety lessened. The jaw pain and headaches were not as severe. By the time I took my last dose I was feeling better and had less anxiety than I had experienced in a long while. My only remaining symptoms were clenching my jaws and jaw pain part of the time.

At around 10 months off , I once again begin to take Ativan, but only on very stressful occasions. For the next 18 months I was careful to only take it once in awhile. Then I went through a couple of weeks of excessive anxiety and before I realized it I was taking a 1/2 mg daily. After about 4 weeks of this, I developed tolerance and interdose withdrawal resulting in me taking another 1/2 mg on quite a few days. When I realized what had happened I immediately cut back to only 1/2 mg a day and divided it into 2 doses. I was doing fine again, but knew that I had to begin tapering off very soon. I decided that this time I wanted to minimize the withdrawal symptoms as much as possible during tapering and everything I had read suggested that the best way to do this was by switching to Valium.
It was difficult, but I talked my doctor into a prescription for Valium. Since I had tapered 1/8 mg Ativan a week in my previous taper and because I had only 5mg Valium tablets, as my doctor would not agree to me tapering off, I decided to cut 1.25 mg of valium which was the equivalent to 1/8 mg of ativan. Also it was ¼ of a tablet and I knew it would be difficult to cut the tablet any smaller. On the third day after this cut I was knocked down with a vengeance. Most of my symptoms were what is commonly referred to as “benzo flu.” Every muscle in my body seemed to ache, along with most of my joints. I was nauseous. My head hurt. I didn’t have the energy to move. So much for Valium being easier to taper…. I knew I could not make that big of a cut again so I went to a water titration taper. I cut a minute amount each day. By the end of my taper I was cutting 1/4 mg every 10 days. It took me the same amount of time to taper off of 5 mg valium, the equivalent of 1/2 mg of Ativan as it did to taper off of 2 mg of Ativan. About midway through my taper several symptoms hit me hard all at once. I experienced horrible nausea, bloating, stomach cramping. The muscle aches and joint pain returned. My agoraphobia became more of a problem. But the worst symptoms of all were the panic and anxiety attacks. I often felt like life was nothing but pain. Each full blown panic attack would send me into a tail spin of depression and feelings of hopelessness.

Today, at 30 months past the end of my taper I still have panic attacks that last for hours, panic attacks that last a few minutes and limited panic attacks that do not grow into full blown attacks. I have irrational fears and find it difficult to go far from home. I cycle though spells of nausea, all over muscle aches, chest discomfort, jaw pain, headaches, mild IBS, and other symptoms. Once in awhile I will have a “window” of a few hours or a day or two when my symptoms mostly go away. This is so different from the way I usually feel that it is hard to believe I am not in another world. When this happens, the fear is not a tenth as strong as it usually is and the physical symptoms are barely noticeable.

A year after my taper ended, I started back in therapy. I was worried that my symptoms were not due to protracted withdrawal. I spent 17 months in therapy and my symptoms are still the same and I did not discover anything in my past or in my present situation that could come close to accounting for all my symptoms.

I have learned several things through this benzo ordeal. I have learned to be more gentle with myself…to expect less, not more of myself. I have learned about acceptance…acceptance of where I am at today….acceptance that I am limited in the things I can do….acceptance that I don’t know from day to day how I will feel or what I will be able to do. I have learned to enjoy the good days and to allow myself to do whatever will help me make it through the bad days. I have also learned a bit about enjoying the simple things in life….a sunset, the changing colors of fall. I have learned that there will be times I will question whether or not all of this is protracted withdrawal. When I begin to question I try to remind myself of all the reasons to believe this is protracted withdrawal and not some other problem. These reasons include: it makes more sense than anything else, nothing else accounts for my panic, anxiety and fearful thoughts. My physical symptoms cycle and thankfully I don’t usually have them all at once. The brief windows I have had show me what normal for me was at one time and what it can hopefully be again.

By Lins