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/