Barb,
fwiw, my medication history is not that different fro yours -
1. i h ave been taking siniemet now for 17+ years
2. upt until a coupokle of months ago when i started comptan, i was taking
a sinemet 25/100 - every 2 to 3 hours, round the clock -
by my arithmetic that means 8 to 10 pills a day
. i would also por 1/4 pills of the regular 255/100 when i was sluggish!
b. mirapex
c amantadine
3. i started developing side effects to the amantadine, got weaned of that,
and the incredible dyskinesias sstarted again.
4. Changed doctors. The new doctor put me on comptan. Immediately my need for
sinemet dropped to ONE TABLET EVERY 6 TO 8 HOURS. THan didnt last - it settled
at every 4 hours after a couple of weeks, but i had very big swings betweee
offs and ons - extreme dyskinesia alternating with severe
dystonia - which i have hardly experienced till now - and on periods of about
0 to 20 miniutes, each cycle. i tried taking 1/2 tablet of sienmet every 2
hours or so - and this worked much better.
5. now he is weaning me off mirapex and on to requip - it seem that the ups
and downs are being smoothed out - lets hope so.
BUT THE BIG GAIN IS THE LOWERING IN THE AMOUNT OF SINEMET I NEED.
the only other time this happned was when i started taking eldepryl some 15
years ago.
btw, i am takin sinemket 25/100 at the dosage 1/2 tablet every 2 to 3 hours
through the day and night. a significntreduction over 2 months ago.
hope this iinfo is of some use to you.
hilary
Barbara Blake-Krebs wrote:
>
> 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]
