My Reaction to Zyban 4/2004
Though this will seem long, it’s still a condensed version. How does one fit years into a few pages? But here goes:
In December, 1997 I decided to quit smoking. My doctor prescribed Zyban. Within 3 days of taking the drug, I began to notice changes in my personality. I became more agitated, anxious, angry, and nervous. At first I attributed it to the holiday season, my husband being away for work reasons, my business, the stressful job of renovating our home and other reasons. By day 6 I was violent (throwing little things), crying continuously, unable to concentrate, shaking violently, rocking, unable to remember a thing. I became suicidal and homicidal. I was a body with no soul or mind. Fortunately (how sad to say this), I had a friend who had had an allergic reaction to medication several years before and recognized what was happening to me. She stayed with me until all hours of the day and night and suggested my doctor put me on an anti-anxiety drug (Xanax). It took about 3 months until medication showed any signs of working. And grateful, my suicidal and homicidal thoughts stopped with a few months. These were the hardest to fight on a daily basis....
Throughout this, even though I would collapse, shake, seizure, lose my train of thought and words and worse, my doctor insisted that I had anxiety or manic-depressive disorder and that there was no way the Zyban could continue to affect me months later. This diagnosis was due in part to Glaxo Wellcome's insistence that the drug would be out of my system after 30 days with no remaining side effects. (Please note that the amount of days varies with each phone call.) It was also decided that I stop my birth control (Depo-preva) in order to balance my system again. Besides a hormone test and complete typical blood work-up, no other tests were ever done. Things improved enough that I got a job. Part-time for a couple months then I decided to tackle a full time position. But that didn’t last. The strain of my body trying to regulate itself after stopping the Depo was too much. (Little did I know then that the progesterone in the Depo had been, yes believe or not, keeping me in check.) In March, 1999 I had a complete relapse but thank goodness without “dangerous” thoughts. (Note: It takes 12-18 months for the body to re-adjust itself after Depo-preva shots end.)
Again, I contacted Glaxo and was told by the person on the other end of the phone, that hormones were not affected by Zyban (so what’s up with menopause and other listed hormone-related side effects?!) and that no clinical testing was ever done to investigate this. I tried to find out if this was correct, but I find nothing but dead ends. By this time I had a new doctor. Gratefully, he realized that something was wrong and sent me to a brain neurologist/psychiatrist/brain surgeon. I finally believed there was hope in helping me. The neurologist also contacted Glaxo. Now since it was well over a year since I had stopped the Zyban, he was told the same thing as my first doctor. It couldn't be the Zyban, it was something else. I had a blood test and he relied on hormone tests over 1 year old - taken the month I quit the shots.
Since all standard testing showed nothing, I quote: "Since the symptoms are so much like manic depressiveness, let's treat the symptoms and worry about the cause later." I was placed on Depakote and nothing else was ever done. Depakote did not seem to work, but he and my husband insisted I continue to give it a try. I was sick, not all together intellectually, I reluctantly and stupidly listened to them. With each ovulating and menstrual cycle, I would revert back to crying and being foggy and so the doctor would up my dose until I had a reaction. From one nightmare to another. I became extremely "high" by 10 am. About 2 pm I felt like I was going to be sick. When my husband came home from work that afternoon, he found me on the bathroom floor unable to move my left side, babbling and drooling, having difficult breathing. I had been there nearly 45 minutes alone. He called the neurologist/psychiatrist and rushed me to the hospital. The emergency room doctor claimed I had a seizure or more likely a stroke. The neurologist (who never came to see me) said it was a manic high and to stay on the Depakote, just at a lower dosage. Needless to say, I fought that and stopped taking it. Since that day a lot written on TIAs (transient ischemic attacks) and it looks like that’s what happened. Since then all the doctors I have I’ve spoken to agree with this diagnosis.
Afterwards, my problems worsened. I stammered quite often, lost mobility in my left arm and hand. A few times, the doctor even had to give me shots of Valium to stop uncontrollable shaking and spasms of my entire body. I was continuously tired and weak, shook a lot, my memory worsen, my ability to form sentences was impossible, my anxiety and anger heightened. I got more migraines and headaches. I was given lorazepam to control any further shakes and spasms as well as the anxiety when needed, which was almost daily. The idea of being on a drug the rest of my life so I can walk and talk was not a pleasant one, but I have to admit it helped. Nowadays, I may take one now and then to help me slow down enough to sleep which still is pretty erratic.
By this time my husband had quit his job of 20 years to find
a job closer to home so he could be home in a matter of minutes instead of
hours or days. In May, 2001 we flew out to
Tests in August, 2001 showed high creatine clearance levels (kidney stones involved), central nervous system etiology (dizziness, lack of coordination, migraines, double vision). Estradiol (form of estrogen) levels very low. Slight loss of vision in right eye. (This is the same side of my face still that tends to droop and/or go numb.)
Early 2002 found me diagnosed with porphyria - an enzyme disorder. There are more smaller problems, but I think I’ve said enough.
Private researching showed metabolites in my system nearly 3 1/2 years later. I'm not alone with this either.
So where I am now that it is nearly 6 1/2 years later? After much work and taking more vitamins and supplements than I care to count, hours of oxygen, there still are problems though I can say am about 75% or so what I was before all this. I still have a major problem sleeping. Energy comes and goes, though is much higher than it’s been in years but nowhere near what it was before all this. Pain in the joints and muscles has worsened, spasms have lessened. Memory has improved – on a good day I can even beat some of the contestants on Jeopardy. On a bad day, I’m happy to remember where I am. Anxiety, depression, and other psychological problems have disappeared, the seizures (at least noticeable ones) have stopped altogether. I no longer collapse from a whiff of perfume. Unfortunately I do seem to get angry faster than I had before the medication usually in the morning and around my cycle. I still shake a bit, usually on the inside, and occasionally the head still bobs. GI problems are worse, sometimes unbearable and I still pass some small kidney stones now and then, but it’s getting longer and longer in between attacks. Vision’s not as bad except when I’m really tired, but nighttime and movie theaters are still a problem. Nightmares are not as gory. My face still feels like it droops and is numb but the family says it’s not noticeable. Occasionally I still look “stoned” or do the “drunk walk”. The migraines aren’t as frequent. On the plus side, my periods are regular for the first time in my life and I’m going to be 43 next month! I’m finally able to contribute to my family once again and I’m alive. So here’s my story....where’s yours?