Dear Julie: Your message of June 14 was most welcome. I had gotten to a
point of "saltiness" - my father's name for the black funk we sometimes
experience. Restless Leg Syndrome had me over the ropes and I was really
really tired of fighting it seemingly all my life. My Mum and dad also told
me I would outgrow it. Mum had it too and nobody noticed that she didn't
outgrow it. She died a healthy 87. I remember she walked for hours and
rubbed stuff on her legs a lot. Nobody knows what caused her to die. She
had just told a friend she felt fine and probably had another good two years
left - and she died in midsentance. On reflection I think she just thought
about what she said and realized another two years with RLS was just too much
to endure. BTW - as with you there is no one with PD in my family. BUT, my
two daughters and my brother have mild RLS. RLS is progressive and that is
pretty obvious. I don't want my kids or my brother carrying that load so I
downplay it and only my husband and close friends know how awful it can be.
You are quite right. Doctors don't really "get it" about how hard it is to
live with. Pile on the added insult of PD and it is a wonder we haven't gone
ballistic.
The only good news I have for us is that a physician wrote an article for the
latest NIGHT WALKERS newsletter entitled "When The Doctor Is The Patient." I
will quote a bit of his letter ---- As a fellow sufferer of Restless Leg
Syndrome, I have talked the talk and walked the walk. However, my ignorance
and suffering was magnified since I am also a medical doctor. Before my
enlightenment, this sleep disorder affected my personal well being and
directly impacted on patient care. On many a long night on call in the
hospital, I evaluated patients who described my own symptoms. Little did I
realize my own malady was kicking me in the face. I would give the patient
reassurance or in some cases prescribe Quinine for the vague all-encompassing
diagnosis of "leg cramps." To my embarrassment now, I would then proceed to
yell at the nurses for calling me for such a trivial problem..........
Interesting eh? This doctor is now a member of the Medical Advisory Board
for the Restless Legs Syndrome Foundation, Inc. His address is: Frankie
Roman, M.D. Director
Centre for Sleep Disorders
Doctors Hospital, Massillon, Ohio
Now we need a physician with both PD and RLS who will then really understand
the seriousness of this combination. In the meantime we will continue to
experiment with drugs and potions. My latest is that I tried Hydergine and
it didn't work for my RLS. Hydergine is listed in different drug books as a
vasodilator or a psychotherapeutic agent or an adrenergic blocker. I also
tried Oxycodone (read test in Sleep journal June l993 by Robert Wood Johnson
University Hospital). IT WORKED !!! I took l5 mg and slept for eight hours
straight. What a relief after a year of fragmented sleep at 2-3 hour
increments. But after that wonderful sleep I was rubber kneed for the rest
of the day. I tried lesser doses and that didn't work at all so I will put
Oxycodone in my pandora's box and do what you do even though it frightens me
too to "think of it getting worse than it is" and finding that our Sinemet
doesn't work any more. And, yes, my hope for a cure for PD is tied to my
wish for relief from RLS, as your hope is. I don't like to take so much
Sinemet but I don't have much choice do I? I tried Permax but had visual
problems - bright blue sparklers. Same with bromocriptine. Also with
Hydergine. All three have ergot so guess have to watch out for ergot.
My med schedule is as follows and so far is working:
Sinemet CR 25/100 three times a day around B-L-D time.
Sinemet regular 25/100 an hour before bed.
Sinemet CR 50/200 at bedtime.
I sleep about six uninterrupted hours at this point. What a great feeling.
Thanks for sharing your experience in this regard. I am sending a copy of
this message from me to the PD list as I know four other sufferers of PD/RLS
who need to know anything that one of us hears that might help this
devastating condition. None of us want to join other insomniacs at 4 a.m.
the "Hour of the Black Dogs." (where did you find that - what a word
picture.)
Barbara Yacos, R.N.
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