Hello all...
Picture me discouraged, befuddled, and anxious. It's put me into
POCRASTINATION mode!!! What is going on with my meds, I ask, and why. I
am faced with making some immediate decisions re: which meds to be stay on,
switch to, or drop.
code = presently on; * = on pre-hosp; = on post-hosp. + = was scheduled
to start Mon. 6/5
ƒParlodel vs. Mirapex* vs. Requip +
ƒwhether to restart a COMT (Tasmar* or Comtan )
ƒElavil and xanax* vs. Ambien, Antivan, & Valium
ƒSinemet 25/100 - 6-8/day (2 + 2 + 2 +2)* nighttime - ca 1999(+2) ; 8-9/day
[daytime (1 + 1/2 + 1 + 1/2 + 1 + 1/2 + 1 + 1/2 + 1) + nighttime(1/2 + 1/2
+ 1/2) + 1/2 - ?]
I am having quite a bit of "freezing" time right now. The last time I
experienced so much was when I attempted to go off the Tasmar at the time of
the warnings. In fact, it kept me from going off Tasmar.
BACKGROUND
When I arrived here 4/21/00 from the nursing home, I recall feeling
quite "frisky." While COMTAN often hadn't agreed with me during the previous
weeks and sleeping was a challenge due to a tight throat, the meds overall
seemed to be o.k. The major complaint since has been a tight throat during
the day also with some disquieting episodes. But my strength seemed to be
improving, and I felt optimistic.
Then last week, the episodes seemed to get worse and last longer...this
impression was one that my home health care worker emphasized to me when I
mentioned it. This fellow is a curious one, imo. (As we felt the need
financially, etc., to discontinue home health care, this week we have been
without.) Anyhow on Friday, I asked Fred to call our MDS and speak to him of
my tight throat concern. THAT certainly started to ball rolling. By evening
one of hiis nurses had called us twice -- the first to bump us into an appt.
Tues.; the second to say the doc said we "could/should" (?) stop the COMTAN.
NOTE: Our MDS' style, imo, is to find out what the patient and/or cg "want"
to do and often go with that. Evidentally, Fred had complained about the
Comtan.
As you might imagine, going off a med is no picnic! At first we took
some doses at our discretion. Monday, I think was a zero-Comtan day.
Tuesday a.m I had a LOT of rigidity. We decided with the nursethat we would
leave for the appt. whenever I was able -- as it turned out, we left an hour
after I said I was able, despite my saying we shouldn't as Fred's determined
side kicked in. I was almost totally frozen at the clinic. Øne nurse who
saw us quickly told me NOT to take any meds until the doc could see me --
that proved to be quite a while.
I was so off when he came in, I couldn't speak until near the end of the
longish interview (having taken 1/2 Sinemet when it began.)
The upshot was I would stay off the Comtan, try to readjust my Sinemet
per schedule Fred suggested, and switch from Parlodel to Requip next Monday.
(I asked why not Mirapex which I was on pre-hosp. He referred to the fact
that it had taken me quite awhile to adjust to Mirapex originally.) Don't
most people have a long "break-in" time with Requip? Do most people prefer
it to Mirapex? He also said if we failed to get the meds to work, he would
recommend a STN (yikes!)
This week has been very difficult both physically and emotionally -- the
latter in part due to Fred heavy presence in the process. (another story!)
Right now things have gotton even dicier in response to my call to Pahwa via
Darla in which I suggested I might go back on Comtan. Pahwa (who is once
again on his way out of town) said I could either do that or go back on
TASMAR.
So HELP!!! WHAT SHOULD I DO? [NOTE: MDS who will offer their opinion
are at a conference this week starting today for travel.]
1. Go back to my former meds with some modification in scheduling of dosage.
If so, what?
2. Something else?
My best regards,
(a tired) Barb
P.S. Below is a summary I never completed:
A Recent Case of Neuroleptic Malignant Syndrome - Looking for answers
by Barbara Blake-Krebs and Fred Krebs
1. What set off the series of 5 unusually “violent” dyskinetic episodes on
Mar, 17 & 18, after the last of which Fred called an ambulence which took an
unconsious Barbara to the ICU of Kansas University Medical Center where Fred
was shocked to learn that her life was in danger? Symptoms included low
blood pressure, renal failure, high 104-5’ temperature.
2. What, in retrospect, were the warning signs?
3. What was the diagnosis and treatment (in and out of hospital)?
4. Is there anything else or different that might be done at this juncture
to improve Barbara’s recovery?
My condition continues to 'buffalo" Fred and I. Here is a recap recent
events, changes, and
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
Meds (pre-hospitalization) (6-10 25/100 Sinemet/day; 3 __Mirapex;
Tasmar;
2/3 25 mg Elavil at bedtime for neck pain.
8 a.m. 2 Sinemet
Noon 2 Sinemet
4 2 Sinemet
Meds (post-hospitalizaton)
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
(Added 5/3/00)
6 p.m. - 6 a.m. 3 1/2-25/100 Sinemet (as needed)
2 .5 mg Ambien (as needed)
As needed 1/2 - 0.5 Lorazepan (Antivan)
(every 8 hrs.)
