This is a true story -- a very odd situation I am presently caught up in.
My husband seemed uncomfortable with the telephone conversation he was
having...I picked up another phone, and heard the home health-care
administrator tell him with conviction, "Your wife abuses her medications.
She sneaks extra doses from the kitchen during the day, and doesn't tell
anyone. She ends up taking too much. It's what caused her recent violent
dyskinesias that became nearly fatal."
While it is quite possible that an excess of Sinemet is what poisoned my
system, caused renal failure and near death, I have always been inclined
towards taking the LEAST med (esp. Sinemet) that I could to control my
symptoms, and have been inclined to s-t-r-e-t-c-h the time between doses --
certainly not "sneak" extra pills.
Nevertheless, one thing the home-care administrator was right about is
the amount of Sinemet I was taking before my hospitalization was at an
all-time high but within prescribed limits (6-10/day). I had no sense of
pendng near-disaster despite multiple warning signs listed below that neither
Fred nor I heeded beyond mentioning in my quarterly PD checkup.. In the
future, we hopefully will be more aware and assertive..
=================================================================
WARNING SIGNS MEDS WERE OUT OF WHACK - PRE-HOSPITALIZATION
1. The new prescription for 6-10 Sinement itself. This represented a
big jump in my daily intake, and also a lack of direction. We should have
been raising questions and alarms unceasingly with my doctor. the list, each
other, local support group members, etc.
2. Significant change in med (and/or symptom) pattern. Altho I was
first diagnosed with PD in 1984, the first med I was given that effectively
addressed r. arm tremor and neck pain was 25 mg Elavil/bedtime started abt.
1987 and remaining my sole nite-time med at the same dosage until abt. 1998.
A year later in 1988 I began 25/100 Sinemet -- titratng up to 6
1/2-Sinemet/daytime.
Abt. 1988 my Elavil dosage was increased to 100 mg, and later reduced
to 75 mg to 50 mg. Abt. 1999 is when painful throat constriction started
becoming a problem, particularly after taking the Elavil. Çonstriction
started waking me many nights with a sense of fear -- my gut reaction was to
take two (2) Sinemets - this did relieve the throat pain but frequently kept
me awake. (At the time, I normally tool 2 Sinemet 3-4 times/day). This
nite-time Sinemet bothered me because it disrupted my sleep pattern and my
med pattern!!
3. Frequent insomnia. While I had had occasional bouts of insomnia
before, I now turned into an al-nite Solitaire freak. Instead of reporting
this unheaIthy sleep deprivation to a doctor, I started looking forward to
this new ritual.
===============================================================
POST-HOSPITALIZATION WARNING SIGNS/SYMPTOMS
What concerns us is my post-hospital med regime has yet to be ironed out.
e.g. I have frequent spells of my throat constricting, dystonia, dyskinesia,
etc. \(esp. st nite) Since the end of April when I was discharged from the
nursing home, I have been consulting quite often with our local PD clinic
staff, finally changing my Family Practitioner (to one more caring and
involved), and am trying to make an appt. with a throat specialist at
KUMC's ENT clinic.
Meds (post-hospitalizaton) as of May 3, 2000
6 a.m. 1-1/2 25/100 Sinemet
1 - 200 mg Comtan
1 - 200 mg Bromocriptine
9 a.m. 1- 25/100 Sinemet
1 - 200 ng Comtan
10 a.m. 1 - 200 mg Bromocriptine
noon 1 - 25/100 Sinemet
1 - 200 mg Comtan
2 p.m. 1 - 200 mg Bromocriptine
3 p.m. 1 - 25/100 Sinemet
1 - 200 mg Comtan
6 p.m. 1/2 -25/100 Sinemet
1 - 200 mg Comtan
1 - 200 mg Bromocriptine
------------------------------------------------------------------------------
-------
I stuck religiously with the above schedule at the nusing home -- both
Fred and I prodding staff to deliver pills on time. I am still on this
schedule daytimes, *except we are trying to reduce the 6 a.m. Sinemet from
1-1/2 to 1 per MDS.
Due to insomnia from a very tight throat at night, my MDS made the
following additions at my post-hosp. appt. 5/3/00. I think of them as
"wild cards" that are hard to manage or time at nite and which have an
unpredictable effect how the day dosages will work.
(Added 5/3/00)
6 p.m. - 6 a.m. 3 1/2-25/100 Sinemet (as needed)
2 .5 mg Ambien - sedative (as needed)
As needed 1/2 - 0.5 Lorazepan - anxiety relief (Antivan)
(every 8 hrs.)
After nearly 3 weeks I DO feel that I need more help in when and how to
use these meds . While I have appts. slated with my doctors, I am weary of
the almost constant pain and exertion. Thus I had phoned this administrator
Thursday to see if any of their home-care personnel were suitably trained to
act as observers for a 24 - 48. My idea was that they could provide a more
accurate diary than either I or my husband could.
But, before pursuing this possibility, the administrator and I ar e going
to have to come to some understanding whether she is dealing with a case of
deception or confusion.
MEDS
==========================================================
Pre-Hospitalization | Post-hospitalization
==========================================================
6-10 Sinemet 25/100 5 - 6-1/2 Sinemet 25/100
Tasmar 5 Comtan 200 mg
3 Mirapex 4 Bromocriptine 200 mg
1 Elavil 25 mg 1-2 Ambien .5
xanax atavan
==============================================================
Any thoughts?
Regards,
Barbara Blake-Krebs 59/44 [log in to unmask]
