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Toni

April 9, 2012

Administrator
HMO

Dear _______:

This letter is to inform you of gross errors that were made in my care during 2005 - 06 as referenced in your letter of November 12, 2011. These mistakes have led to my being handicapped (hopefully, not permanently). After reading this letter, I hope you will realize the problems psychiatric medicines cause for some people and take steps to change procedures in Behavioral Health.

In the summer of 2005 I had severe vertigo and went through about 6 weeks of vestibular rehab. I also developed pain in my jaw (both sides) and went through months of going from doctor to doctor, trying to find out what was wrong with me. I was having difficulty sleeping. I became distressed and anxious about all this and went to Behavioral Health.

I met first with Ms. __________. I’ll never forget the list of meds she showed me from which I could choose. It was like she was opening up a Pandora’s Box without telling me all the bad side effects that might be caused by these meds. I was a person who had never taken more than Ibuprofen for pain or antihistamines for allergies, and suddenly someone was saying, “Here, try one of these. They won’t hurt you.”

But I was still anxious, and one of my relatives had taken an antidepressant that helped her, so I tried an SSRI. I was prescribed Celexa. As soon as I started taking it, my anxiety increased 1000% -- it was like I had stuck my finger into an electrical socket. Ms. __________ and other people at HMO kept telling me that antidepressants sometimes take a month to start working. Meanwhile, I was trying to work, dealing with the dizziness and jaw pain, and on top of everything, I was dealing with the symptoms from the SSRI. I remember Ms. __________ telling me, “You’re going to feel so calm!”

I'd like to stop here and reflect on this scenario. Why didn't Ms. __________ or any of the other healthcare providers at HMO realize that the antidepressant was causing me severe agitation? The drug comes with a pamphlet that warns doctors about rare, but serious side effects such as new or worsening agitation.

After a month of this torment, Ms. __________ said that, yes, Celexa wasn’t working, so she tried me on another one. I think I started seeing Dr. __________ at this point. I was tried on at least 4 other meds – antidepressants and Lamictal (at this point I started keeping a journal). I tried each new med for about a month – everyone at HMO kept telling me that it sometimes took a month for them to work. I lived my life feeling like I was literally plugged into the house current. Try living your life like that! I began to feel that there was really something terribly wrong with me mentally.

About 6 months into this nightmare, I showed up in Dr. __________'s office absolutely beside myself from the effects of these meds. I remember crying and calling for my husband. __________ prescribed Klonopin, a benzodiazepine, which worked like magic. It calmed me dramatically. But then the real nightmare started. __________ continued to prescribe Klonopin while trying out other psychotropic meds. He also prescribed Ambien for sleep.

By the summer of 2006 I was not taking antidepressants -- because obviously they had not worked -- but I was still on Klonopin. At the time I did not realize that Klonopin was causing my anxiety and depression. I was going into interdose withdrawal but didn't realize it. I still thought there was something wrong with me, and there was some med out there that would help me -- after all, that's what the doctor was telling me, and I trusted the doctor.

HMO had some kind of diagnostic program, in which an EEG is done. This test was supposed to show which med would help me the most. I remember the nurse at the diagnostic clinic telling me how calm I would feel after they found the right med for me. But first I had to get off all meds, including the Klonopin before I could have the EEG.

This was my first cold-turkey withdrawal from Klonopin. My journal entry reads, “The agony continues. First full day off tranquilizer. Thought I would die, thinking God had abandoned me.” The EEG reported that Depacote would help me most, but, guess what, it made me depressed. I got back on the Klonopin because I realized that I had to try to get off the drug slowly.

Sometime during this period -- I can't remember when -- another psychiatrist told me I could get off Klonopin by just cutting the pills in half. Well, that was another cold turkey withdrawal that sent me into another round of pure agony. This was the same doctor that later told me that it takes a long time for nerves to heal. Well, he's the one who damaged my nerves by having me abruptly quit Klonopin.

I tried to get off the drug using a tapering method I found online at a Benzo support group. With my husband’s help, I bought some very sensitive scales to weigh small amounts of the ground-up pills. These efforts didn’t work because I was already into tolerance withdrawal. My journal entry for October 8 reads: “I am trying to taper off Klonopin, and it’s by far the hardest thing I’ve ever done. I wake up anxious, dreading getting up. I flap my hands, and my body shakes.”

At some point in all this, Dr. __________ prescribed electric shock therapy for me, I guess because he couldn’t think of anything else to do. Luckily, my husband did some research and expressed grave doubts about this treatment. I remember him sitting next to me on the bed, saying, "I don't want to lose you."

So I canceled the EST appointment. I remember Dr. __________ calling me and saying in a huffy tone of voice that perhaps I should see a different doctor. Well, in retrospect, he was right!

Not getting any help from doctors, and not knowing what else to do, by the third week in October, I decided to check into a psychiatric hospital to withdraw completely from the Klonopin and Ambien. This was my third cold-turkey withdrawal. Dr.__________ and Ms. __________ gave the OK for the insurance to pay for it, but I don’t know what they thought about their responsibility for my dependence on Klonopin and Ambien.

I’m sure Dr. __________ did a residency at a psychiatric hospital, but does he know what it's like to be admitted? First, they take away all your possessions, except your clothes, and lock them in a room. If you want to brush your teeth, you have to ask for your toothbrush!

All the other people in my area of the hospital were alcoholics, so everything was slanted toward alcoholic addiction, including 12-step meetings. (At least these meetings gave me something to do.)

When I look back at my notes from my time in the hospital, I can hardly believe what I went through – being locked up, like I was in prison -- someone coming into my room 4-5 times per night to shine a flashlight in my face -- being visited for an hour by my husband and son in a large room with all the other “inmates" -- raging headaches -- having so much anxiety that I felt like I was standing outside of my body.

After 4 days, I went home, but the nightmare wasn’t over. I started going to an addiction recovery program sponsored by my insurance company. The doctor associated with this program prescribed Seroquel to help me through the withdrawal, and I was still taking Nortriptyline, which Dr. __________ had prescribed before I went into the hospital. At this point, I was deathly afraid of being left alone, so the addiction program gave me a place to go where I was with people. However, I always felt like a round peg in a square hole. All the other people in the program were alcoholics, but I got sick and dependent on a drug that my doctors had prescribed. The doctor who supervised the program said that after a period of addiction, some GABA receptors are permanently damaged. (Considering the protracted withdrawal I've gone through, this may be correct.)

January 1, 2007, I went back to work after taking a leave of absence. I remember how hard I struggled during my first days at work. My brain didn’t seem to be connected to my mouth – I could hardly form a sentence.

By the spring of that year, I was feeling pretty good, so I decided to get off the Seroquel and Nortriptyline. Of course, Dr. __________ wanted me to take more Nortriptyline! Well, I made the mistake of getting off these drugs too quickly. By summer I began to experience withdrawal from the Nortriptyline and perhaps continuing withdrawal from the Klonopin and Ambien. I had increased anxiety, fear, muscle twitching, dizziness, irritable bowel, and extreme difficulty sleeping. For about 3 months, I averaged 3 hours of sleep per night. Many times, I had to call my husband to come home to stay with me because I was afraid to be by myself.

At the end of September, I decided that I had to get back on the drugs, and then more slowly taper off them. I went to a new psychiatrist, just to get prescriptions for small doses of the drugs – Seroquel, Nortriptyline, Gabapentine. My almost immediate reaction to these drugs was alternating extreme grogginess or extreme anxiety. Again, it was like electric current was running through my body. I remember one day when I was so agitated, that I imagined my husband wanted to commit me to an institution. (I guess it was my body getting used to the Nortriptyline, again.)

As I slowly got off these drugs, a pattern of symptoms was forming. In various degrees I have the following physical problems that I believe were caused by the drugs and the three too-rapid withdrawal processes that I went through:

· A hypoglycemia-like condition: My body can't seem to get the energy I need from the food I eat. I get hungry too often. During the first year after withdrawal, I gained 25 pounds because I was constantly hungry. (Check my records.)

· A fibromyalgia-like condition: I have pain in my muscles and joints and a strange tension and stiffness in my muscles, especially in my neck/jaw/across the tops of my shoulders/upper back.

· Chronic fatigue: Very little energy. Rather than energizing me, exercise depletes me.

· Myoclonic jerking: This is like the jerking right before going to sleep -- small seizures.

· IBS: Something is wrong now with the way my body digests food. I can't eat spicy or sugary foods or drink alcoholic beverages. (I never drank a lot of alcohol, but I'd like to at least be able to drink half a glass of wine or a beer.)

· Difficulty sleeping: This is primarily caused by the hypoglycemic condition. When I'm asleep, I'm fasting. If I go too long without food, I wake up with a headache and dizziness.

As a result of these physical problems, I am now moderately handicapped. I can't work -- not enough energy. I had to take early social security because of not being able to work. I used to be a world traveler, but now the only way I can travel is to go some place that is like home, where I don't have to do much physical activity, and I have all the foods I need close by. I manage to get out and participate in activities, but everything I do is a struggle.

I believe I sustained damage to my nerves during the horrific and barbaric withdrawal processes I went through. I don't want that to happen to other people. So, I am asking you to reconsider how HMO doctors prescribe antidepressants, benzodiazepines, and other psychotropic drugs. All healthcare professionals need to monitor patients much more closely for serious side effects, like severe agitation, and benzodiazepines should not be prescribed continuously for more than 4 weeks.

Thank you for taking the time to read this letter.

Sincerely,


Toni

p.s. I’m not a unique case. Many other people have suffered short-term and long-term negative effects from benzodiazepines. These Websites provide some information. Read the stories. Many of the symptoms in these stories are remarkably similar to mine.


http://www.benzobuddies.org/

http://www.benzosupport.org/

http://www.benzo.org.uk/manual/

 

 

 

 

Disclaimer:  The information contained in this website was not compiled by a doctor or anyone with medical training. The advice contained herein should not be substituted for the advice of a physician who is well-informed in the subject matter discussed. Before making any decisions about your health or treatment you should always confer with your physician and it is always assumed that you will do so.

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Last updated 22 July 2015