123 information

ST. VITUS' DANCE
(Sydenham's Chorea; Rheumatic Chorea)
GENERAL INFORMATION
DESCRIPTIONSt. Vitus' dance is a temporary disorder of the parts of the brain
that control movement and coordination. St. Vitus' dance is not contagious. The
central nervous system--including the brain, the coverings of the brain
(meninges), and the spinal cord -- and peripheral nerves are involved. St.
Vitus' dance can affect children of both sexes but is more common in girls.
Appropriate health care includes:
Home care after diagnosis.
Physician's monitoring of general condition and medications.
Psychotherapy or counseling for the patient and family. Parents and teachers
should understand that the unusual movements are temporary, and the condition is
not contagious.
SIGNS & SYMPTOMS
Uncontrollable, purposeless and non-repetitive movements that are wandering or
jerky. The eyes are not involved.
Facial grimacing that disappears during sleep. Symptoms are similar to those of
cerebral palsy, except these last for a limited time, while cerebral palsy lasts
a lifetime.
CAUSES
A delayed (up to 6 months) complication of inadequately treated Group A
streptococcal infections, usually of the throat or skin. St. Vitus' dance is
more likely to occur in summer and early autumn.
RISK FACTORS
Prior strep infection.
pbusk@... wrote:Many years ago when dystonia was called St. Vertress Dance
(??? need to
research this again), doctors in Europe used IV's with alcohol to treat
their patients. It brought relief, but, in time they found patients had
an even worse problem with the addiction. When dystonia first hit me, I
attended a symposium. One neuro. told us a small glass of wine would
help ease the tremors, pain, etc. I have tried it when my medications
wouldn't help, but only a very mild wine and a small amount. Never do I
drink. My meds don't mix with it. Now cigarettes help me in the
morning, but by late day I can feel the tremors when I first light up.
Cartons here can be found for $21.00 at one store. But never ever would
I have started this monster that has become such a habit if I'd known.
May be I am just very lonely since my kids are gone and I was so active.
Could be I am depressed and need a stimulant to get me through the day.
Lortab gives me a slight feeling or euphoria, I don't get sleepy. I
call it my fix. But only take it when I need for intense pain. Anyone
have any idea why things become so addictive to us. Also does anyone
else have a problem with typing words. I think I'm writing a correct
word then when I go back I wonder what in this world I am thinking.
Things in my mind don't reflect things I write. Others have said the
same thing. Also decision making and grocery shopping. HUM

You too. It is a little hard for us "recoverees" since we tend to fall in to
self pitty a lot easier than others I think, but, I also, after this long, have
a strong faith and learned to love life, even when it's not at it's best.
Sometimes that's when we learn what we are really made of, and become stronger
for it.
-Lori

Phyllis, I uploaded the PDF meds list in the file section for the
group. You will need adobe acrobat reader to open it though. I don't
know how complete it is, but it is a nice list. Care4dystonia.com has
really been an informative site for me as a newly
diagnosed "dystonian". I did alot of searches on dystonia and I just
came across them only recently. Blessings- Jill

Couldn't pull up this list Jill. Where did you find it on the webpage?
I printed out one not too long ago and many drugs were not listed on
there. Care4Dystonia has a really helpful website. Many of the
pictures in Twisted were shot at the Miami Symposium a few years ago. I
have learned that Laurel has received enough money now to produce
Twisted. I had a storm at the symposium and I had cameras all around me
but was never interviewed so I don't think I'm on there. My good friend
I met from TX was there and interviewed. She raised a ton of money by
herself (with help from some radio announcers) for the documentary.
Should be aired in near future. Phyl

Lee,
Happens to so many couples when the bestly dystonia hits our homes.
Wrecks relationships not only our bodies. Also runs many kids away
because they are in denial. Sad shame but truth. Also I find myself to
be bitter a lot, so no wonder they want to run from me. But normally I
try to be as pleasant as possible. My husband hit me with a ton of
bricks one night when I asked him a simple question about me. He said I
wasn't the person I used to be. No one wanted to be around me anymore.
I asked friends and they said he was crazy! Helped me feel better
anyway...ha! P

I started smoking a couple of years ago because I read cigarettes had
dopamine in them. I thought I could try a couple and be done as in my
younger days of socializing. WRONG. I take many drugs that should be
addictive. On my good days, I don't need those medicines, but giving up
cigarettes has become a beast in my life I hate. If you haven't started
it don't...WARNING. For some reason nicotine is very addictive to us it
seems.
I am a closet smoker, by the way. Very ashamed of myself. Smoking is
now in the minority here in our area. Phyllis

Hello,
Some people have reported that Nicotine can help with some Dystonia
symptoms. However I would not advise anyone to start smoking!
I had stopped, and after my Dystonia began I tried a cigarette, bad
move, I haven't even found the willpower to think about stopping
again since.
Anyone tried canabis? It's not supposed to be as addictive.
Regards
Robert

Hello,
I think that alcohol is just another drug, and if a glass of wine
helps some people, why not? However I would agree that one must avoid
it, if one intends to drive.
Regards
Robert

You should not mix alcohol and the strong medications used for dystonia.
Alcohol is a fast solvent which allows the medication to act much faster and
stronger. You could technically overdose even you took the same amount of
medication. Because the alcohol would amplify the effects of the medication.
Like drinking and driving it just does not mix.
Terry

if you are seeking medical treatment for dystonia , that is,
tablets .can you drink alcohol? hope its not a silly question

I know I've mentioned it before, but I'm on my 8th year of sobriety
again. Relapsed terribly, when my parents died 3 weeks apart. I think
it's a peace and understanding that most people never get to in their
whole lives.
I'm proud of you!
Elizabeth

My husband resented my ST and wasn't helpful at all. He finally left us because
I could no longer support the family nor take care of him.
Lee
jillra65 <jillalexander@...
I'm the same way. I don't like feeling limited. Pacing myself has been
a challenge. Even though my husband is disabled, he is helpful in
certain things ie.- driving. He also does the cooking and grocery
shopping. He doesn't trust me to do those
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

Not really certain if you can go back to work on the same day as
injections with blepharospasm. the shots usually aren't as bad in the
eye area according to my friends who get them. there is a doctor now
who is giving them under the lower lid of the eye. seems to help her a
lot. some people have a hard time with their upper eye lids drooping
for a few days. again botox works different on each person and
depending on how the neurologist gives the injection. good luck.
Phyllis

Hi all, I had a question.. Is anyone here doing botox for blepharospasm? I
haven't had my first ones done et as I am waiting my appointment at the motor
disorders clinic.. can you believe it takes 2 months to get an appointment!
It sounds like they really hurt. my question is.. will I be able to go back to
work that day or will I need a day or more off?
Also, I know that the median age for blepharospasm is 40s and 50's but I am
curious? How old were you when dx'd? and how long have ou done the botox?
Does it slow the progression or does it just mask the symptoms? Is holding down
a demanding job still going to be possible for long term? I am 37.

I found this PDF med list while surfing tonight-
http://www.care4dystonia.org/pdf/medlist.pdf
Hope it helps. Blessings- Jill

I know what you mean Phyllis. I am old enough to be my daughters grandmother, I
married and had kids late. I do wish I'd had them younger because dealing with
several diseases and teens and middle age just isn't easy.
Bev

http://mydna.com/ for meds and what they are used for
http://www.stsupport.com/html/index.php a good site for STers or
or CDers.
And since the SS Disability form is online, FILL IT OUT! The process
usually takes months anyway, but if you qualify, it is retro-active.
I tried to work at anything, till I couldn't drive..and still did some.
I haven't got time for the pain,
Elizabeth

The hardest thing for me to learn is pacing myself. I want to do it all NOW!!
Lee
jillra65 <jillalexander@...
At first, changing my life due to dystonia was a pretty bitter pill to
swallow, but I have now accepted it more. I was so gung ho about alot
of things but realized that I couldn't get them done. I now try to
approach life more liesurely these days.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

WONDERFUL guide to print out :o) You will need adobe acrobat reader
to
open it though. I hope it is helpful. I found it to be very thorough
and informative.-
http://www.care4dystonia.org/pdf/DeMystifyingDystonia.pdf
Blessings- Jill

Kim, caffiene is a hurdle that I must overcome. I am not human in the
mornings until I have my coffee LOL. I have really tried to limit it
though. Eventually, I will get the mind to omit all caffiene. I agree
about the stress. It is quite difficult to not be stressed at times.
Blessings- Jill

I stopped drinking diet coke because the neuro said NO to aspartame. It was
helpful to stop. Maybe part of it was stopping the caffeine?
Lee
Kim <kittypaws5@...
This may sound stupid but my neuro told me to stay away from caffine
that it tends to make the tremors worse. I thought she was nuts but
lo and behold, I quit all caffine: coffee, pop, chocolate and even
though I still have them, they don't seem to be as severe.
I have to laugh when the doctors say that dystonia patents "should
avoid stress" since this can bring on episodes . What world are they
living in? :) You should have seen me when my husband had a heart
attack a few years back....what a mess but needless to say that was
unavoidable. But I handled it ok. The most important lesson I've
learned while having a tremor episode is not to drink something hot.
OUCH that hurts when it spills on you!:)
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

This may sound stupid but my neuro told me to stay away from caffine
that it tends to make the tremors worse. I thought she was nuts but
lo and behold, I quit all caffine: coffee, pop, chocolate and even
though I still have them, they don't seem to be as severe.
I have to laugh when the doctors say that dystonia patents "should
avoid stress" since this can bring on episodes . What world are they
living in? :) You should have seen me when my husband had a heart
attack a few years back....what a mess but needless to say that was
unavoidable. But I handled it ok. The most important lesson I've
learned while having a tremor episode is not to drink something hot.
OUCH that hurts when it spills on you!:)
Have a great day everyone!
Kim

To Terri Schiavo
We meet we mince, whether we are a boy or a girl.
Then we decide whether it is Terri with an i, or Terry with a y. And why.
Now we are asked to decide when to live and when to die.
This really strikes home for me. Wishing like so many others that there were
more that we could do. Terri's mother wanting Terri to live for the love of her
family. Christians hoping and believing she would and could live. The Pope
himself stepping forward and supporting the feeding tube as a normal care
situation.
Conflicts like this make us re-evaluate our values and the values of society.
Peace,
Terry

You are so lucky that your children are helpful. I have a 14 yr old daughter who
abuses me and has been cited twice. We are currently waiting for a court date
for the last citation. Its good to hear about nice kids for a change.
Bev

Ty for all the great information!!!

The worst pain is when they have to inject a very deep muscle. You can feel the
needle ripping through muscle tissue. OUCH!!
Lee
Terry <tlgongtlgong@...
You will have no additional sensation other than the needle. The muscle you
know is already there and will not be a surprise.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

What a sweet son! I wish I could afford massage therapy. When I was on Workers
Comp, they paid for massage therapy.
You may also want to consider homeopathic treatment. www.homeopathic.org
Lee
jillra65 <jillalexander@...
I have really considered acupuncture
and massage therapy. I will probably ask the neurologist who he
recommends. My 12 year old son is pretty good at massaging my upper
back and shoulders though
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

Lori, I'm glad you are getting some pain relief from the botox and
are able to function more now. That's what we all want to
hear...good news!
Jill...welcome! This group is sooo supportive...glad you found us.
My first series of injections were about 3 weeks ago. I have
omandibular dystonia (OMD)...contractions in my jaw/mouth/face which
makes it impossible to speak and eat properly. The injections have
really reduced my teeth grinding and relaxed my jaw to the point
that I can open it a little. No "episodes" since, where my whole
jaw contracts and it hurts like hell. My daughter freaks out
whenever my tongue sticks out as she has never seen it before. I
have had a problem drinking since the first injections. Thank
goodness for water bottles, squirt...squirt! The injections hurt as
most members have told you. The one thing I wasn't expecting is
that the dr moved the needle around to find the right muscles to
inject and the needle was huge. Also, about a week after my
injections I had to drive in a rain storm for 2 hours...talk about
stressful. It set off a painful shift in my left jaw, pulling my
mouth to the left, and I have developed pursing of the lips. I look
like I'm in the "mood" all the time now. The pain has subsided
thankfully, but the puckering and pulling are still present. If you
can, avoid stressful situations. Hope you get a smaller needle.
Keep us informed.
Rosy

My doc wouldn't let Jim stay in the room with me. He said holding his had would
put my arm in the wrong position and he needed me to just sit with my hands in
my lap. I only had 8 shots this first time. Maybe next time when (if) I am not
so hysterical, I can show him more spots that are really tight and he will hit
them too. But, I did get SOME relief. At least the pain level is down to a
point I am not breaking down crying all day.
-Lori

The link did not quite come through. Here it is again.
http://www.tiscali.co.uk/lifestyle/healthfitness/health_advice/netdoctor/archive\
/000401_2.html<http://www.tiscali.co.uk/lifestyle/healthfitness/health_advice/ne\
tdoctor/archive/000401_2.html
Terry
I am keeping a copy. Suspect drug lists have disappeared on us before.

I'm sorry it's taken me so long to respond, I haven't checked my e-
mail in awhile.
I too have cervical dystonia and my symptoms are almost exactly to
yours. I've been having botox injections for 3 years now and they
help me tremendously!! I can remember the first time I went to my
neuro for the injection, I was scared to death. She warned me ahead
of time that this is going to take alot of patience on my part. It
took about a year and a half to find out what exact mucscles to
inject. She uses an emg and once it's inserted, we can "hear" the
muscles with the severe tremors in it. When I first started I was
having 18 different injection sights (my muscles were terribly tight)
but now I have 8 injection sights and their the same all the time.
She knows exactly where to inject now becuase I've got permanent
marks (little spots) from the needles.lol
I can remember when I first started having them that I would dread
going because they hurt. Not trying to scare you but prepare you.
Face it, noone like to even get a shot in their behind but my dr kept
telling me that if I felt like crying to cry, she now let's my
husband in the room with me and I hold his hand during the procdure.
To this day we walk out of the office and he has no circulation from
me sqeezing so tight lol. I have also held a rolled up towel to
squeeze. This procedure doesn't take long at all but it's going to
seem like a lifetime for the first couple of times. And beware, I've
had a couple of injections that were either too much botox or the
wrong injections and I couldn't hold my head up by itself I had to
wear a cervical collar until my next injection but the very next
injection we refigured what we were going to do and things were fine
the next time. This is a team effert between you and your doctor so
be sure to inform him of all new symptoms even if you don't think
it's from the botox. He/she needs to know every change in your body.
I'm due for another botox on April 5th and I'm counting the
days!!!!!! It's to the point I can't wait until injection day. I'm
in such terrible pain now but I know inabout a week after the
injection, I'll be "fine". ( no tremors, no tilted head and can
function normally" My husband and I have this routine going now for
injection day. After the injection I'm usually crying (more emotional
than pain) but after I chain smoke a couple of cigarettes we go out
to breakfast (which is very rare for us cause we don't have the extra
money to do that) It's become a special treat for us. THen I come
home and put ice on my injection sight, take a pain pill or two and
stay in bed and read all day. This is such a luxury for me so I take
advantage lol.
As far as the shoulder pain, try pain patches and I have a hot tub
that helps tremendously. Even get in the shower and have it bead
down on those mucscles. It's trial and error to find out what helps
but i definalty agree to stay away from chiropractors. I even stops
going to massage therepy cause it helps that day but afterward it
hurt worse.
I hope I didn't scare but helped you and I didn't mean to write a
book lol If I can help please don't hesitate to ask questions.
Please let us know how you injection goes as we'll all be thinking of
you and praying.
Kim

Dot, enjoyed your story!!!
Susan

I also found no special benefits to EMG guidance. The BOTOX was just as
effective, without the EMG. A lot depended on the skill of the neuro. I no
longer get injections because they don't help my pain, fatigue or general
functioning.
Lee
John Long <ioperate_1@...
I know what you mean Sue, in regards to where to inject the Botox. My During my
first 4 years with ST, the doctors would always use the EMG machine. Then my
insurance sent me to a pain management doctor, and they normally don't use the
EMG. They just ask me where it hurts, and they go at it.
My current doctor usually asks me where I need it the most. Sometimes I can
actually tell him where exactly (using my finger to point) where to inject some
more. I actually prefer not using the EMG machine.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

Here is one of the sites that lists trazadone as affecting or causing
dystonia-
http://www.tiscali.co.uk/lifestyle/healthfitness/h
ealth_advice/netdocto
r/archive/000401_2.html
I also read somewhere that phenergan did too. I thought it to be odd.
Blessings- Jill

Hi guys, I really have nothing new that helps but would like to bring
up 2 old research studies....I know it is repititious to most of you
There were 2 European studies done in the late 70s and again in
89....they started STers on high dose Ativan and slowly backed it
off---this rebalanced the neurotransmitters causing the ST and the
remission rate was high although the groups were small..
I did get a reply from a man from the STBB---a couple of years ago -- he
said that his doctor had done this, it worked for years but he thought
it was coming back...
This was mentioned by Dr Paul Cullis in a mid-90s in an NSTA
Journal....I also medlined searched this
I was started on high dose Ativan in 1990 with no knowledge of this
study--I cut back from 8mgs a day to 3 over months and did better on the
lower dose but when I got to 2 I could not tolerate the pain from the
extra pulling and i had been on it much longer than the study---but as
new people join us, I wonder if any doctor would follow these old
studies with the DEA rules on controlled substances..
I am just throwing this out there FYI...
Boy, Phyllis, I had my head on my chest for 3 months after botox--it is
good that it is out in a few months when it is in the wrong place....not
to scare anyone, it was placed in only one muscle without the EMG
machine--I have cervical dystonia, ST....
Sue

The original plan was to work through May or June, then give notice
so I could go back to college in the fall to get my biology degree
and vet tech certificate. Unfortunately, I am in such pain most of
the time, I will probably be unable to do even that.
I talked to an attorney today and he suggested I continue working
until they fire me - don't quit, he said. That would be more "proof"
that I can not work in the field I have been trained in and have been
working in for 12 years. What really bugs me is that they just
aren't listening to me. This is no longer a one man office no matter
how good or bad I feel. They need more trucks out in the field, they
buy a $100,000 new Mack. They need more laborers, they hire them. No
questions asked. I can no longer do everything in the office, "You
just need to stay as long as it takes and just do what needs to be
done." they say, then post my job when I am at the doctors. The
attorney also suggested I make sure the neurologist is aware and
documents all the side effects of the meds (confusion, short term
memory loss, "brain farts", etc.)
I suppose I need to wait till I am "let go" to file for disablility,
right? I can't do that while I am still working full time.
I am also wondering if I was not working 40 hrs a week with the guys
I work for nagging me constantly because I didn't finish something or
something got put off till the next day, or I just plain forgot (even
tho I started keeping a list) if I would be in as much pain as I am
in and if I would even need botox. Jim (hubby) is stressed to the
max with me sick and him having to take over for me, his aging mother
calling him constantly because she refuses to do things for herself,
his 45+ hr a week job (thank goodness he telecommutes and is at home)
and all the stresses that go along with it, my son is starting to
feel neglected because I am (1) not there and (2) crabby and hurting
when I am.
Just not sure what to do and frustrated as all get out.

Hi Jill, my name is John. I've had cervical dystonia for 10 years now. Your
symptoms are almost exactly like mine. I'm 40 years old, and the father of two
sons.
I just want you to know that things are going to get better. I remember
thinking that always be as twisted as I was, and that the pain would never stop.
The number one advice I can give you is "stay away from a chiropractor". I did
the same thing you did. My head was turned all the way to the left and up, and
this chiropractor took my neck and CRAAACK all the way to the right. WOW did
that hurt. I did this one more time, and the 3rd visit I told her she'll never
do that to me again.
Botox is fantastic. I call it my life saver. It sounds like your neuro is
going to use an EMG machine. They put these little pads on you, then the doctor
uses a special type of syringe (sp?) and inserts it into muscles to find out
where the spasms are taking place, and how strong they are. He then injects the
botox into them. I'm not going to lie and tell you it's painless, but it only
lasts a couple of minutes, and then you're done. It is well worth it.
If you have more questions please feel free to contact me. What medications are
you currently taking? I have found that Artane works well for me. Let me know
how things go.
Take Care,
John
jillra65 <jillalexander@...
Hi,
My name is Jill. I am a 39 year old mother of 3 children. I have
joined this group because I have been diagnosed with cervical
dystonia...or torticollis. I have been seen by a neurologist who is
sending me to another neurologist to see about having injections. He
mentioned botox or cortisone. I go on the 15th of April to the other
neurologist. I am in the dark about what he wants to do on my first
visit. How will he know which muscles to inject...from an
Electromyography? Can anyone tell me what to expect? How painful will
this procedure and the injections be?
My symptoms are that I can't turn my head to the right, and my head
wants to pull or jerk to the left and I stiffen. Sometimes my upper
back wants to arch or press against my chair. I am constantly holding
my head and neck in effort to keep my head from jerking, twitching or
wobbling. The muscles on the right side of my neck are painful if I
lean my head to my right shoulder. The trapezius muscle on the inside
of my left shoulder blade is quite painfully tight at times. It has a
sharp pain when my head wants to pull left. I am quite stiff in my
upper shoulders and around my collar bone. I also get
tremors...mostly when I am tired, stressed, upset, excited or try to
totally relax.
I have tried to research my condition as much as I possibly can.
Although, it doesn't compare to hearing the experiences from others.
I have been quite frustrated to say the least. I tried a chiropractor
and he did alot of pulling and twisting on my head and I felt worse
after seeing him...like I had just been beaten up. I was also getting
stressed out from having to go 3 times a week. They told me that I
would pretty much be totally cured after a year of their treatments.
It is my understanding that it is not curable. I have been going for
three months and I wasn't any better than when I started and was more
stressed and even felt worse. I do admit that I felt like I was
walking more straight and my lower back improved, but that was about
it.
I finally got the courage to see the neurologist after I got tired of
going to the chiropractor. I waited so long because I was fearful of
hearing that I would need surgery like my sister had on her cervical
spine. I cried tears of joy to hear that I wouldn't need surgery. It
was an answered prayer. I do have three herniated discs, arthritis,
and degeneration. The herniations were all in a row in my cervical
spine with one nerve being pinched.
I completely empathize with anyone experiencing this disorder. It is
my understanding that we are unique. I try to keep a sense of humor
about it, but it is so difficult at times. I can't safely drive any
more because I can't turn my head. I get tired too easily. My husband
is disabled and I home school my children, so I really do need to be
healthy. I feel like I am losing control. Does it get better with the
botox treatments and the oral meds? I would be very grateful for some
input. Thanks so very much! Blessings to all of you.- Jill

Hello Jill,
Welcome to the group. My own problems fade into insignificance
compared to what you have been going through. However I can see that
you have researched the subject, and are pretty well on top of things
already.
I have found the group members to very knowledgeable and experienced,
and if I may say so, quite a lively bunch!
The chiropractor seems to have wasted your time, again perhaps
through lack of knowledge on his part.
In your post you didn't say how or when this all started?
Kind Regards
Robert

Hi,
My name is Jill. I am a 39 year old mother of 3 children. I have
joined this group because I have been diagnosed with cervical
dystonia...or torticollis. I have been seen by a neurologist who is
sending me to another neurologist to see about having injections. He
mentioned botox or cortisone. I go on the 15th of April to the other
neurologist. I am in the dark about what he wants to do on my first
visit. How will he know which muscles to inject...from an
Electromyography? Can anyone tell me what to expect? How painful will
this procedure and the injections be?
My symptoms are that I can't turn my head to the right, and my head
wants to pull or jerk to the left and I stiffen. Sometimes my upper
back wants to arch or press against my chair. I am constantly holding
my head and neck in effort to keep my head from jerking, twitching or
wobbling. The muscles on the right side of my neck are painful if I
lean my head to my right shoulder. The trapezius muscle on the inside
of my left shoulder blade is quite painfully tight at times. It has a
sharp pain when my head wants to pull left. I am quite stiff in my
upper shoulders and around my collar bone. I also get
tremors...mostly when I am tired, stressed, upset, excited or try to
totally relax.
I have tried to research my condition as much as I possibly can.
Although, it doesn't compare to hearing the experiences from others.
I have been quite frustrated to say the least. I tried a chiropractor
and he did alot of pulling and twisting on my head and I felt worse
after seeing him...like I had just been beaten up. I was also getting
stressed out from having to go 3 times a week. They told me that I
would pretty much be totally cured after a year of their treatments.
It is my understanding that it is not curable. I have been going for
three months and I wasn't any better than when I started and was more
stressed and even felt worse. I do admit that I felt like I was
walking more straight and my lower back improved, but that was about
it.
I finally got the courage to see the neurologist after I got tired of
going to the chiropractor. I waited so long because I was fearful of
hearing that I would need surgery like my sister had on her cervical
spine. I cried tears of joy to hear that I wouldn't need surgery. It
was an answered prayer. I do have three herniated discs, arthritis,
and degeneration. The herniations were all in a row in my cervical
spine with one nerve being pinched.
I completely empathize with anyone experiencing this disorder. It is
my understanding that we are unique. I try to keep a sense of humor
about it, but it is so difficult at times. I can't safely drive any
more because I can't turn my head. I get tired too easily. My husband
is disabled and I home school my children, so I really do need to be
healthy. I feel like I am losing control. Does it get better with the
botox treatments and the oral meds? I would be very grateful for some
input. Thanks so very much! Blessings to all of you.- Jill

Lori,
Get a doctor to back you up in case of legal action. You are losing a
part of your life by working. I was there and I had to retire. I loved
my job. Very sad but at least I can spend some time at home not in so
much pain. If you decide with the aide of a neurologist, do so
immediately. SSI begins to take points from you if you take very long.
They can't fire you or replace you with good cause. The American
Disability Act will protect you. But why put yourself through all the
pain and suffering when at home you can get away from the computer and
leaning over the desk all day. That was how it was with me. Came home
and went to bed and stared at the ceiling the rest of the day. Botox is
hard, but may be an answer to helping you continue to work. I have a
friend who continues to work now that Botox is helping her cope.
Phyllis

The parents see meaningful movement from her and the husband has 32
written affadavits against him concerning her health care by medical
professionals.
Why hasn't Terry's husband gotten a divorce or something, it's been 15
years? Let her parents have their daughter as they think she has a
right to live. Very difficult situation as her husband claims she
told him she didn't want to live that way. My heart goes out to all
who are involved.

The only problem I've heard about neuro's is they don't like to presribe pain
medication. Some of these neuro's think that the botox alone should do the
trick. Anyone here had this trouble with a neuro?
John
l harris <belowskinbeauty@...
Neuros are the only ones who understand me also.
I do understand the severe pain, as does my neuro. Before I had acupuncture
treatments, I was not functional. They were my savior, though not a cure---only
pain management.
When the pain gets too bad, I use percocet and lidocaine patches.
Lee
John Long <ioperate_1@...
The only doctors I've found to understand Dystonia is a neurologist, except the
first one I ever went to. My first neurologist examined me. Performed the
normal neurological tests, then referred me to a psychiatrist. At this time I
also had no idea of what was wrong with me.
My pain was so bad that I had to lay on the floor during most of the visit.
Anyone here know what I'm talking about? My wife had to sit behind me and
constantly rub my head to help ease the pain some. I thank God that my pain
isn't like it used to be.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

Well, I got my first round of botox yesterday. Talk about PAINFUL!!
I can at least turn my head to the right a little more and hold it up
a bit straighter. Still in a lot of pain, but he said it would take
about 2 weeks to get the full effect.
While I was out for the day, one of the guys I work for posted my job
in the newspaper. I feel like an idiot. I had been honest with the
other guy (they are twins and co-owners) and told him I was in a lot
of pain and the meds made it hard sometimes (I forget things and get
confused), but they hired a part time girl to help out (it was no
longer a "one man office" anyway - but she quit today). I am in so
much pain from sitting at the computer all day that my hand and arm
spasm and curl up in the evenings (very painful) and I just go home
and drop. All household stuff has fallen to my son and hubby because
I can't do it.
I am calling an attorney tomorrow to see what needs to be done about
disability. Bookkeeping is just not something I can do anymore.
Anybody have any advise?
-Lori

Neuros are the only ones who understand me also.
I do understand the severe pain, as does my neuro. Before I had acupuncture
treatments, I was not functional. They were my savior, though not a cure---only
pain management.
When the pain gets too bad, I use percocet and lidocaine patches.
Lee
John Long <ioperate_1@...
The only doctors I've found to understand Dystonia is a neurologist, except the
first one I ever went to. My first neurologist examined me. Performed the
normal neurological tests, then referred me to a psychiatrist. At this time I
also had no idea of what was wrong with me.
My pain was so bad that I had to lay on the floor during most of the visit.
Anyone here know what I'm talking about? My wife had to sit behind me and
constantly rub my head to help ease the pain some. I thank God that my pain
isn't like it used to be.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

Pain is very bad for the body. The pain alone can cause severe problems. Check
out the American Chronic Pain Assoc. website, if you haven't already.
www.theacpa.org
John Long <ioperate_1@...
they will. Here's what I think was a huge error on all the doctors I've had.
Back in 1995 & 1996 when my pain was a constant "10" (except while sleeping), I
was only given Vicodin for pain. I really didn't know of the stronger pain
pills till recently.
I think doctors are afraid to presribe what a patient needs due to the watchfull
eye of the DEA. As anyone here who's had cervical dystonia, the pain is almost
unbearable.
I'll bring this up with my PM doc when I see him in a couple of weeks (while
getting my Botox shots). Although this PM doc is the one who told me to see a
psychiatrist regarding my panic attacks. I don't think it would be a good idea
to take valium & xanax together.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

The only doctors I've found to understand Dystonia is a neurologist, except the
first one I ever went to. My first neurologist examined me. Performed the
normal neurological tests, then referred me to a psychiatrist. At this time I
also had no idea of what was wrong with me.
My pain was so bad that I had to lay on the floor during most of the visit.
Anyone here know what I'm talking about? My wife had to sit behind me and
constantly rub my head to help ease the pain some. I thank God that my pain
isn't like it used to be.
Take Care,
John
hereiam28311 <chloebadcat@...
Cogentin, Artane, Xanax, Valium.. been there, done that. Even been
catherized, next time I will have a gun.
It's amazing all these meds docs come up with, when they probably
haven't even looked up dystonia in a med manual.
Also, when I contracted shingles last year, they were all excited
about giving me something for pain.
But 15 years of CD, they think the spasms, the muscles contastly being
pulled, the disfigurement of your neck, spine and hips from the
pulling.....ahhh, you aren't in any pain. Ignorance is bliss.
Phyllis, I agree with you. There should be a group as strong as the
AARP for people with disabilties. I haven't seen anything come out of
research money, symposiums. Still a bunch of human med. mice.
One inclusive group would do more, than all these scattered
organizations for each disease.
Elizabeth

Just because they should, doesn't meen they will. Here's what I think was a
huge error on all the doctors I've had. Back in 1995 & 1996 when my pain was a
constant "10" (except while sleeping), I was only given Vicodin for pain. I
really didn't know of the stronger pain pills till recently.
I think doctors are afraid to presribe what a patient needs due to the watchfull
eye of the DEA. As anyone here who's had cervical dystonia, the pain is almost
unbearable.
I'll bring this up with my PM doc when I see him in a couple of weeks (while
getting my Botox shots). Although this PM doc is the one who told me to see a
psychiatrist regarding my panic attacks. I don't think it would be a good idea
to take valium & xanax together.
Take Care,
John
l harris <belowskinbeauty@...
A comprehensive pain management doc should prescribe whatever drugs will help
the pain. These include muscle relaxants, anti-depressants, anti-convulsants,
etc.
Lee
John Long <ioperate_1@...
I personally think that valium works much better than xanax for dystonia. My
only trouble is that my shrink won't treat dystonia, and my pain management
doctor doesn't prescribe anythink but pain medication. For anxiety/panic
attacks, I would recommend xanax. Valium didn't help my anxiety, but it sure
helped my neck spasms.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

Cogentin, Artane, Xanax, Valium.. been there, done that. Even been
catherized, next time I will have a gun.
It's amazing all these meds docs come up with, when they probably
haven't even looked up dystonia in a med manual.
Also, when I contracted shingles last year, they were all excited
about giving me something for pain.
But 15 years of CD, they think the spasms, the muscles contastly being
pulled, the disfigurement of your neck, spine and hips from the
pulling.....ahhh, you aren't in any pain. Ignorance is bliss.
Phyllis, I agree with you. There should be a group as strong as the
AARP for people with disabilties. I haven't seen anything come out of
research money, symposiums. Still a bunch of human med. mice.
One inclusive group would do more, than all these scattered
organizations for each disease.
Elizabeth

A comprehensive pain management doc should prescribe whatever drugs will help
the pain. These include muscle relaxants, anti-depressants, anti-convulsants,
etc.
Lee
John Long <ioperate_1@...
I personally think that valium works much better than xanax for dystonia. My
only trouble is that my shrink won't treat dystonia, and my pain management
doctor doesn't prescribe anythink but pain medication. For anxiety/panic
attacks, I would recommend xanax. Valium didn't help my anxiety, but it sure
helped my neck spasms.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

I was able to take Valium for 9 years, and never had to increase my dose.
John
Terry <tlgongtlgong@...
Xanex or Valium. Tried both. Valium is well known. The xanex is different in
that tranquilizes the brain differently. Which explains the psychological
addiction, your brain knows what it is doing. Xanex was good also for anxiety
and sleeping problems. Psychologically to me xanex was more powerful. But
along with the addiction angle there is a tolerance problem some people have.
Having to increase the dosage to get the same effect the longer you take it.
Valium was the safer bet along or ativan.
Terry

I personally think that valium works much better than xanax for dystonia. My
only trouble is that my shrink won't treat dystonia, and my pain management
doctor doesn't prescribe anythink but pain medication. For anxiety/panic
attacks, I would recommend xanax. Valium didn't help my anxiety, but it sure
helped my neck spasms.
I take medication myself for hypertension. My meds control my BP pretty well,
except when my pain level increases.
Feel free to ask anytime Robert. Take Care.
John
robert <bisto52@...
John,
Just one more question :-)
Does the xanax help with the dystonia as effectively as the valium.
Valium is an excellent muscle relaxant, which is why I take it. The
anti- anxiety effect is a bonus. Also I am 57 and would tend to have
high blood pressure. The neurontin and valium I take helps with that
as well. I can tell by the absence of ringing in my ears!
Kind Regards
Robert

I agree with you Elizabeth. This entire thing is a disgrace to the
disabled who can't speak for themselves. And the "hear say" of Terri's
husband should never have been admitted in court. Going further, he
seemed to have disconnected himself a long time ago, yet her parents
have been by her side. And now her husband wants to have her cremated
which is another horrible attack on her family's wishes. This is
against what they believe.
I don't think those on disability have much strength in Washington.
Why? We don't have money to fight with big politics. And we can't join
in forces because we can't get there to let them hear us.
Make certain if you choose to die when in a vegetative state, you have a
living will. However, in Terri's case, there has not been any testing
for over 10 yrs to determine if, in fact, she is totally vegetative. My
daughter keeps assuring me she is not able to feel each organ shut down.
Being a speech pathologist, she is well aware of the brain. And some of
her signs of awareness may not be anything other than impulses from her
body. I think however, there needed to be a current update of testing
done. Kelly went on to say all families hope for signs.
Point though this is not humane amongst criminals, animals or any other
creature other than the disabled. I weep for this family.
I hope this doesn't appear I am in favor of what is happening. But
trying to understand all sides. We MUST write or call our congressmen
and women regarding our points of view.
Phyllis

I am really upset about this Terry Schiavo murder.
There are over 40 million people on disability in the US, 36,000 in a
vegetative state.
Criminals, animals, murderers, anyone on Death Row legally cannot be
dehydated and starved to death.
On the 9th day of this ordeal, they gave her a small amount of
morphine.
The parents see meaningful movement from her and the husband has 32
written affadavits against him concerning her health care by medical
professionals.
The 10th day, yesterday, her kidneys started to fail.
Pictures of her before this ordeal show her as a beautiful, vibrant
woman, not the ones you see on TV now.
I know a woman with generalized dystonia that was left in a nursing
home because she was unable to speak, with all the spasms and
contortions that appear with generalized dystonia. She is a lawyer,
but was overtaken by the lack of knowledge of the medical staff.
With over 40 million of us, and those not already on Social Security
Disability, why aren't we changing laws; but just sitting by and
watching the courts put this woman to death inhumanely?
Elizabeth Holder

Xanex or Valium. Tried both. Valium is well known. The xanex is different in
that tranquilizes the brain differently. Which explains the psychological
addiction, your brain knows what it is doing. Xanex was good also for anxiety
and sleeping problems. Psychologically to me xanex was more powerful. But
along with the addiction angle there is a tolerance problem some people have.
Having to increase the dosage to get the same effect the longer you take it.
Valium was the safer bet along or ativan.
Terry

John,
Just one more question :-)
Does the xanax help with the dystonia as effectively as the valium.
Valium is an excellent muscle relaxant, which is why I take it. The
anti- anxiety effect is a bonus. Also I am 57 and would tend to have
high blood pressure. The neurontin and valium I take helps with that
as well. I can tell by the absence of ringing in my ears!
Kind Regards
Robert

I hope you never have to have that proceedure done to you as well, or anyone
else. OUCH!!
Here's the story about why I was taken off Valium. For about 9 years I was
taking Vicodin & Valium each day for my cervical dystonia. I used to take a 5mg
valium 3 times a day, and 3 Vicodins ES 3 times a day as well. This along with
with Botox shots every 3 months worked pretty good for me. After these 9 years
my PCP left a message at the pharmacy (during a refill) that he would no longer
prescribe any pain meds for me, and that I need to coordinatate this through my
Pain Management doctor (who gives me the Botox injections). I called my PCP's
nurse to see what was up, and she said that Dr. $$%#$ is no longer prescribing
pain killers. I think it had to do with the DEA cracking down on doctors.
I made an appoinment with my PM doc and while there I told him that he would
have to take over prescribing these meds for me. He looked shocked. He asked
me why I need to take vicodin. I told him for the pain. He told me that he
doesn't prescribe short term pain meds, and also told me that they were bad for
my liver. He told me to ween myself off the vicodin, and we'd talk later about
presribing something I'd only need to take once a day. I told him OK. I then
told him about the valium. He asked me why I take that. I told him it was for
the Dystonia as well, and that I also suffer from anxiety/panic attacks. He
told me that he wouldn't prescribe these as well. He told me that there's much
better meds out there that I could get from a psychiatrist. He then referred me
to the shrink.
I made an appointment to see the shrink. He asked me how long I've taken the
valium, and if I've ever had to increase the dose over that span of 9 years. I
told him no, I've never increaded my dose at all. He then told me that I didn't
have a dependance on them. He wrote me a presription for 30 days, and gave me a
schedule on how to ween off them. I followed the docs instructions to a tee.
The shrink also gave me a prescription of Lexapro to help with my anxiety. By
the time I showed up for my next visit with the shrink I had already been off
the valium for about a week. It was a breeze. I felt a little anxious, but ok.
About 30 days later, I started getting extremely nervous, and having panic
attacks real bad. I made an appointment, and the shrink took me in the next
day. He told me that the only thing that would help the anxiety/panic attacks
would be something in the benzo family. I told him I didn't want to start
taking the valium again, since I considered it a great
achievement to get off them. He then asked me what would I like to take then.
I told him I don't know the names of these meds. He asked me if I wanted to
take Xanax. I told him yes. From day one I felt like a whole new person.
Within about 3 weeks I was able to drive my car (only tried once). I saw the
shrink again a couple of weeks ago, and told him how great I'm doing with the
Xanax. He was very pleased. I asked him about Xanax XR, and he said sure. I
usually only take one a day in the morning. Without one, my ride to work would
be full of anxiety attacks.
Oh, back to the pain med stuff. After weening myself off the vicodin (1 month)
I saw my PM doc, and told him I've had no pain meds in a week now, and that I
was in extreme pain (which he noticed before I even spoke). He prescribed
Avinza 30mg to me. This has worked great for me as well. I only have to take
one each morning, and it lasts 24 hours.
Yes, Xanax is much better than valium, for me. Yes, it is addictive, but I
figured that I was able to ween myself off valium, I should be able to do the
same with Xanax if needed. To not have that horrible anxiety, it was an easy
choice.
Take Care,
John
robert <bisto52@...
Hello John,
Oh my goodness, I hope I never have to have that procedure! The whole
thing sounded very scary.
Picking up on the valium verus xanax xr subject, they are both
benzodiazepines and both potentially physically and psychologically
addictive, so why did they take you off the valium?
Do you take the xanax every day or just as required, and is it better
for anxiety/panic attacks than valium?
My relative who takes the Abilify for psychosis is doing fine except
for a problem with panic attacks.
Robert

Hi Robert, thanks for writing me back. I'm not sure if I remember having any
side effects from the Artane. Now I did try another med before Artane, and that
was Cogentin. WOW.. Cogentin was horrible. Within a week of taking it, I
wasn't able to urinate. I went a total of 3 days without going...... I kept
drinking water, and pretty soon I realized that not a drop is coming out. Also,
I only have one kidney (born that way).
I went to my Urgent Care center, and what they did to me was something NO MAN
ever wants to happen. The doctor told me that they had to put in a cathador in.
He left the room, and two nurses or assistants started the process. One girl
had never done it before, so I got to be the her first. They didn't give me
anything. Not a valium, not anything. MAN DID THAT HURT!!!!! I have to admit,
I cussed, yelled, and did not want them to continue, but they did.
To make a long story short. The doctor told me to stop taking the Cogentin, and
everything should be fine. I went home, and once again I still didn't go for a
little over 2 days. I knew that if I went back there again, they would have to
do the same thing. I got lucky. This time it was a different doctor, and he
said that he'd perfrom it this time, and promissed me he wouldn't hurt me. He
did some accupressure on me, then used Xylocaine. Before I knew it, he was
done! After telling my doctor about that experience, he put me on Artane
instead. Been taking it almost 10 years, and I'm doing so much better now.
I took valium for almost 10 years, but a few months ago my pcp said he wouldn't
write that anymore, and to have my Pain Mgmt doctor start writing them. The
Pain Mgmt doctor told me "No". So he sent me to a shrink to wean me off.
Within about a month I was off the valium, and now I'm taking Xanax XR. Which
works out great for my anxiety/panic attacks I've suffered from. I do have to
admit that valium does a great job on Dystonia.
If you have any questions please feel free to ask.
Take Care,
John
robert <bisto52@...
Hello John,
Quote from http://www.netdoctor.co.uk/medicines/100002158.html, re
Procyclidine:
"Medicines and their possible side effects can affect individual
people in different ways. The following are some of the side effects
that are known to be associated with this medicine. Because a side
effect is stated here, it does not mean that all people using this
medicine will experience that or any side effect."
"Blurred vision
Dry mouth
Anxiety and restlessness
False perceptions of things that are not really there (hallucinations)
Dizziness
Nausea and vomiting
Confusion"
A psychotic episode is the one about hallucinations. The
hallucinations may usually be auditory or visual, and to the
individual appear real (eg hearing voices). So real in fact that it
is very difficult to convince the individual otherwise.
I don't think you have anything to worry about though, if you have
been taking the drug for 10 years. Also it is Artane that you take
whilst the above refers to Procyclidine.
I have never tried Artane and would be interesred to know how you
find it with regard to any of the known possible side effects.
At present I take Neurontin and Valium and probably have got so used
to their side effects that I don't know what I would be like if I
stopped taking them. I think I would have to put my life 'on hold' to
find out!
Kind Regards
Robert

Some rare but serious side effects with Abilify include:
Neuroleptic Malignant Syndrome (NMS). Symptoms of NMS include high
fever, muscle rigidity (tightness), confusion, change in pulse, blood
pressure or heartbeat, and sweating. It can also lead to muscle
breakdown and kidney failure.
Tardive dyskinesia (TD). Symptoms of TD include involuntary
(uncontrolled) and abnormal muscle movements.
But used in schizophrenia!
All this dopamine depletion, do we all have a history of alcohol, drug
dependence?
Elizabeth

Hello all!
I just thought I'd share something that happened with us a couple of
weeks ago. First, I'll start with some background...my tranmission
went out in my truck that Wed. and it was in the shop [it turned out
to be a simple and cheap fix for which I was happy]. My husband
works in a large city about 45 minutes away for the railroad..to say
he has a screwy schedule is an understatement. We live in the
county school district but we drive our kids each day so they can go
to the city schools as their curriculum is more comprehensive. My
husband was due in the courthouse for jury duty on Friday morning of
that week.
We were down to one truck and the kids had to get back & forth to
school - no one close to us to help bus the kids and no one else
that is available at screwy hours to drive my h to work.
Ok, now you have the basic basic backgroud. So when my h got called
for his next train I drove him to the city while the kids were in
school. Off he goes on the train...that was Wed. night. He does
his run and I keep his truck to ferry the kids, great right? Well,
he HAD to be there for his first day of jury duty. Thankfully they
put him on another inbound train on Thursday afternoon.
Well, the train took forever due to the usuall delays on the line.
He arrived back at his home terminal at around 11:00 p.m. that
night. Well, I had to pack up the kids and drive up there and get
him as he wouldn't have time to make it to jury duty in the morning
if he slept in the locker room and I waited until the kids were in
school to pick him up. So off we go. Now, as we're all so familiar
with, there are certain meds that I have to take a certain times.
There are some meds that I take only at night as they make me so
sleepy. Well, knowing that I would be driving for 2+ hours I
adjusted my meds and didn't take the heavy stuff and headed up to
pick up my h.
We were all tired when we got hom and then hit the bed with me
taking only a 1/2 dose of my normal night-time meds since I would
have to get back up in the am to get the kids off to school and him
to Jury duty. I slept ok but not as well as I should have...this
was no surprise to me. I knew that if I paced myself the next day
I'd be ok. Well, my h was in the bathroom getting ready and
commenting on is hair as it's been several weeks since his schedule
has enabled him to go get a trim. I can trim his hair and have
often in the past and he asked me to do it again. So I got started
with the clippers [it has a guard so it's not hard to do and with
the guard you can hardly screw it up-thankfully he's pretty happy
with it all one length!]. I quit using scissors years ago-too
dangerous!
Well, I was nearly finished and had taken the guard off to trim the
scraggly hairs that are inveitably missed when using the
guard...this is usally a few hairs and doesn't take long and I've
never had any trouble doing it.
Ok, keep in mind, I had adjusted my meds to stay up late and didn't
get my normal full night's sleep. Just as I was finishing up I had
this violent jerk in my right shoulder [I'm right-handed] and
scalped him in one spot - BALD!!!! RIGHT ON THE SIDE OF HIS HEAD!
I didn't cut him with the clippers for which I was glad, but then I
was in tears as I felt so bad that I'd screwed up his head -JUST
BEFORE JURY DUTY! Well, my h saw it and just busted out laughing!
He thought it was the funniest thing he'd seen in a while!
So, there we were him laughing hysterically and me laughing and
crying at the same time.
Moral of the story, never use clippers on someone unless you are on
your meds and having a good day. DO NOT CUT HAIR ON MARGINAL DAYS!
Your subject will have either a very "hip" style that most would pay
through the nose for -completely by accident....or they will look
like they are moulting. My h looks like he's moulting - but is
taking it all in stride. I have however, noticed that he's wearing
many more ball caps lately...hmmmm... :-P
I hope you had a good laugh...we all need to laugh at where we are
every once in a while! I sure am glad my h has such a good attitude
about it all! What a guy!
Happy Easter all!
-Dot

Strange you should mention Ambilify. It is an offshoot from neuroleptics that
alter dopamine levels and zyprexa which depletes dopamine. Meaning Ambilify
regulates dopamine. Elizabeth heard it mentioned by the drug company they were
interested in its effects with dystonia.
Elizabeth do you have that reference?
Terry

Hello John,
Quote from http://www.netdoctor.co.uk/medicines/100002158.html, re
Procyclidine:
"Medicines and their possible side effects can affect individual
people in different ways. The following are some of the side effects
that are known to be associated with this medicine. Because a side
effect is stated here, it does not mean that all people using this
medicine will experience that or any side effect."
"Blurred vision
Dry mouth
Anxiety and restlessness
False perceptions of things that are not really there (hallucinations)
Dizziness
Nausea and vomiting
Confusion"
A psychotic episode is the one about hallucinations. The
hallucinations may usually be auditory or visual, and to the
individual appear real (eg hearing voices). So real in fact that it
is very difficult to convince the individual otherwise.
I don't think you have anything to worry about though, if you have
been taking the drug for 10 years. Also it is Artane that you take
whilst the above refers to Procyclidine.
I have never tried Artane and would be interesred to know how you
find it with regard to any of the known possible side effects.
At present I take Neurontin and Valium and probably have got so used
to their side effects that I don't know what I would be like if I
stopped taking them. I think I would have to put my life 'on hold' to
find out!
Kind Regards
Robert

Hi

I've been taking an "anti-cholinergic" -- Artane -- for almost 10 years now for
my cervical dystonia. What do you mean by a psychotic episode?
Thanks,
John
robert <bisto52@...
Hello,
I'm just back from a week in the sun. I was apprehensive about going
on holiday with my wife and another couple in case I couldn't
keep up with the fun, and ruin it for the others. In fact it worked
out fine, I added a little Clonazepam in the evening (plus plenty of
wine). I've come to the conclusion that there is a big
psychological aspect to coping with this, ie accept my problem and
find ways of working around it. Falling into depression makes the
pain worse.
Regarding the Paranoid Schizophrenia, I had mentioned in a previous
post that my relative (26yr old) suffers from a variety of this. We
believe that it was brought on by a combination of genetic
susceptibility triggered by Cannabis. (As you may be aware, in the
UK, proposals to relax the law on Cannabis use have brought the
connection with psychosis into sharp focus.) Interestingly though, it
is a drug that can help spastisity.
My relative had bad reactions to all of the newer meds including
Zyprexa (Olanzapine). The drug that works for him is Abilify; the
only side effect seems to a feeling of restlessness for which he
takes a little Procyclidine. Procyclidine belongs to a group of
medicines called the anti-cholinergics which I understand can be
prescribed for Parkinson's. I asked my Neurologist about trying
it but he warned me that it could trigger a psychotic episode!
It is important to be proactive when choosing medications, whether or
not doctors prescribe them. If I had have been a bit more proactive
instead of listening to one doctor, I might not be in the mess I am
now following surgery. However there is no way of predicting how
different people will react to treatments. I think the lesson is to
use caution, always try the least invasive treatments first. I have
chosen to avoid botox treatment for my tongue.
With psychosis the most important thing for the patient to gain
is 'insight', with psychological help. Unfortunately in this country
when one has a psychosis you are only sent to a Psychiatrist who
prescribes drugs. There is insufficient government funding for
Psychologists to work in this field.
Kind Regards
Robert

Hello,
I'm just back from a week in the sun. I was apprehensive about going
on holiday with my wife and another couple in case I couldn't
keep up with the fun, and ruin it for the others. In fact it worked
out fine, I added a little Clonazepam in the evening (plus plenty of
wine). I've come to the conclusion that there is a big
psychological aspect to coping with this, ie accept my problem and
find ways of working around it. Falling into depression makes the
pain worse.
Regarding the Paranoid Schizophrenia, I had mentioned in a previous
post that my relative (26yr old) suffers from a variety of this. We
believe that it was brought on by a combination of genetic
susceptibility triggered by Cannabis. (As you may be aware, in the
UK, proposals to relax the law on Cannabis use have brought the
connection with psychosis into sharp focus.) Interestingly though, it
is a drug that can help spastisity.
My relative had bad reactions to all of the newer meds including
Zyprexa (Olanzapine). The drug that works for him is Abilify; the
only side effect seems to a feeling of restlessness for which he
takes a little Procyclidine. Procyclidine belongs to a group of
medicines called the anti-cholinergics which I understand can be
prescribed for Parkinson's. I asked my Neurologist about trying
it but he warned me that it could trigger a psychotic episode!
It is important to be proactive when choosing medications, whether or
not doctors prescribe them. If I had have been a bit more proactive
instead of listening to one doctor, I might not be in the mess I am
now following surgery. However there is no way of predicting how
different people will react to treatments. I think the lesson is to
use caution, always try the least invasive treatments first. I have
chosen to avoid botox treatment for my tongue.
With psychosis the most important thing for the patient to gain
is 'insight', with psychological help. Unfortunately in this country
when one has a psychosis you are only sent to a Psychiatrist who
prescribes drugs. There is insufficient government funding for
Psychologists to work in this field.
Kind Regards
Robert

Subject: Re: [Dystonia] My Nephew
I'm so sorry to hear about your nephew. People should be cautious
with all
anti-psychotics. You don't know how the brain will react, especially
with a
familial history of dystonia.
Lee
Zyprexa was thought to relieve dystonia symptoms at one time. It was
the med you wanted to try desperately. I know I did. So glad I didn't.
P.S. Where is Mary Lou Buchanan?
Elizabeth

Don't give up on me yet! I am still lurking. Computer crashed (I
have trouble with the Linux machine,but at least read the mail),
daughter had a baby - went back east to see them for a week, work
went to full time, doing a lot of work on the house (NEEDED repairs -
not the fun stuff) and I am in A LOT of pain again, and am SOOOOOOOOO
far behind on just basic housework it's not funny. Just hanging on
by my fingernails trying to put one foot in front of the other and
waiting for word on the botox.
-Lori

I'm so sorry to hear about your nephew. People should be cautious with all
anti-psychotics. You don't know how the brain will react, especially with a
familial history of dystonia.
Lee
Terry <tlgongtlgong@...
Telling you this may help someday. So here it is. My 25 year old nephew was
just diagnosed with paranoid schizophrenia. Even though he was put on zyprexa
like me he began to show signs of dyskinesia. I think we got to him in time.
The restlessness was so bad he refused the evening dose. The doctor allowed it
long enough for me to tell my story. I think with warning we were able to avoid
making the same mistake we did with me. I sent an e-mail argueing a lower dose.
I am waiting for further news.
Though zyprexa is shown to have fewer side effects. It is not free of side
effects.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

Hi everyone,
Telling you this may help someday. So here it is. My 25 year old nephew was
just diagnosed with paranoid schizophrenia. Even though he was put on zyprexa
like me he began to show signs of dyskinesia. I think we got to him in time.
The restlessness was so bad he refused the evening dose. The doctor allowed it
long enough for me to tell my story. I think with warning we were able to avoid
making the same mistake we did with me. I sent an e-mail argueing a lower dose.
I am waiting for further news.
Though zyprexa is shown to have fewer side effects. It is not free of side
effects.
Terry

check in the newspapers for used tubs. I got mine from a friend that
just wanted to get rid of it. You'd be amazed how cheap you can find
them in the newspapers and they're really easy to hook up. It
definatly helps me with the neck and shoulder pain.
kim

Kim, what a great idea! This apt. is disabled equipped, and has only
a shower. But a big bathroom ( I guess for my upcoming big fat
wheelchair!)
Dot and Phyllis, where are u??? Need at least a weekly dose of your
knowledge.
Dot, I'm praying for you, hope better things are ahead.
I give up on Lori....must have gotten Botox and it worked. They
disappear from the group.
Mary Lou, how are you?
Elizabeth

Hi, glad you have an appt!
I can speak for myself, I was a very Type A, perfectionist person too.
One thing I have found after contracting this miserable disease is,
All the detail-type junk in life, doesn't really matter, it just
keeps you from concentrating on the big picture.
Elizabeth

I only take pain meds and muscle relaxants as needed, which is not every day. I
no longer have BOTOX injections, as they are not helpful for me.
I do meditation and stretching daily. I also have acupuncture treatments when I
can afford them. It takes about 10-12 treatments every three months or so. They
are $50 each.
I also see a homeopathic physician and take a constitutional homeopathic remedy.
Lee
robert <bisto52@...
My Neurologist (whom I have only seen three times) and also a Pain
doctor, suggested relaxation techniques. Anybody had any luck with
this or any other non-drug approach.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

I finally got an appointment made.. It took an entire month to even get one
set up.. it will be the 6th of May.. this is with the motor disorders clinic.
I am having more and more problems at work and really want to get the botox
tried. I am hoping that it will help . The mistakes I am making suck since I
am usually so error-free. I am trying so hard to be careful..

Have you had BOTOX injections for your blepharospasms?
Lee
caninecarousel@... wrote:
Interesting to hear as the regular neurologist I saw who dx'd my
blepharospasm put me on Klonopin and I didn't think it helped at all.. just
made me
tired and grumpy. That doesn't go good with work! It did help the pain in my
legs
though.. I am STILL waiting to get an appointment with the motor disorders
clinic.. a month since my referral and I dont even have an appointment date
set.. So right now I am not taking anything and I dont know what dr to talk to
abt it. Eye dr? Primary care? Nuero that I have only seen once and will
probably not see again as she so promptly referred me away? .. whatever.. right
now I would rather have the blepharospasms than lose my job..
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

I am so glad that I don't have the brain that would make me addicted. Some
people smoke one cigarette, drink one glass of alcohol or take one drug and they
want it for the rest of their lives.
Lee
mary <loonatik333@...
I have serious dystonia attacks which require me to be on 20-40 mg
of valium a day and baclofen and 240mg of codeine. Then I spend the
next year coming off it all and then it happens all over again. I
just take the exact dose every day and cut down gradually. If you
abuse your medicine or need it for the feeling it gives you rather
than its medicinal properties......there is a fine dividing line
between physical/psychological addiction and having a 'drug
problem'. As you say each of us are different and the medicine will
affect us in different ways. Personally, I hate taking 17 tablets a
day but its better than the 26 that I was and worse than the 10 I
will be down to soon.
I find a tendency to become accustomed to the medicine after a while
and get used to it making me sick or tired and it makes my body feel
better when I am taking the least amount possible to function.
I think the situation is slightly different for those who have been
taking either pain medicine or valium for a number of years. It has
been proven that people who have been taking these medicines for a
long time need a longer period to reduce the dosage. Withdrawal
symptoms get tedious but it's well worth going through to feel more
like 'normal' again.
So what is love and what does it actually do? Real love wants the best for
another, and wants it so deeply that it acts to make it happen. It has muscle
and insight. It searches carefully for what's best for the other, and then acts
to help make it come true.
d clark

About 2 years ago I took some relaxation classes. It seemed the
more I focused on relaxing, the more struggle I had since I couldn't
keep my mind off my grinding teeth which was embarrassing in a class
setting. Some people can ignore everything and focus on being
enlightened...I'm not one of those people. I tried my best though
and did benefit overall from the classes and the associations that I
made.
Rosy

All
My Neurologist (whom I have only seen three times) and also a Pain
doctor, suggested relaxation techniques. Anybody had any luck with
this or any other non-drug approach.
Robert

Sandy,
I understand where you are coming from. You need to find the right
combination of medications to keep you working.
You appear to be at a stage I was at 2 years ago with the sudden
onset of a problem that I hadn't ever heard of.
I was lucky in having an understanding employer who allowed me time
on 'light duties' until I sorted myself out with medications that
helped.
Whatever medications you try, you have to perhaps build them up
gradually and allow time for initial side effects to wear off.
From what I have read, the same drugs do not work for everyone and it
can take some time to find the right combination.
Most doctors seem to have a poor understanding of Dystonia. My
General Practitioner (GP - the UK equivalent of your Primary Care
dr?) admitted that in 30 yrs of practice he had never come across
Dystonia. (Actually he probably had, but didn't recognise it)
What he did know however, was what drugs might be useful for muscle
spasms and he was willing to let me try some combinations. Doctors
also know what combinations of drugs to avoid.
Good Luck
Robert

Hi all
I have serious dystonia attacks which require me to be on 20-40 mg
of valium a day and baclofen and 240mg of codeine. Then I spend the
next year coming off it all and then it happens all over again. I
just take the exact dose every day and cut down gradually. If you
abuse your medicine or need it for the feeling it gives you rather
than its medicinal properties......there is a fine dividing line
between physical/psychological addiction and having a 'drug
problem'. As you say each of us are different and the medicine will
affect us in different ways. Personally, I hate taking 17 tablets a
day but its better than the 26 that I was and worse than the 10 I
will be down to soon.
I find a tendency to become accustomed to the medicine after a while
and get used to it making me sick or tired and it makes my body feel
better when I am taking the least amount possible to function.
I think the situation is slightly different for those who have been
taking either pain medicine or valium for a number of years. It has
been proven that people who have been taking these medicines for a
long time need a longer period to reduce the dosage. Withdrawal
symptoms get tedious but it's well worth going through to feel more
like 'normal' again.
Anne

Robert,
I have never tried herbal treatments. I take Zanaflex, Klonopin, LorTab
and Skelaxin also added when the muscles are working extra hard. I know
the drugs are affecting my major organs. But, I have decided to try to
live my life as best as I can while I can. I would not wish this crazy
beast on anyone in their elderly years. I guess what I'm saying is live
as best as I can and die young if need be. Maybe a cure will be found
before that time comes. I pray so.
My daughter has learned of a neurologist in TN who is putting a Baclofen
pump higher into the spine rather than waist high. The pump works like
gravity, the medicines goes down. The higher the pump, the more
successful to reach those areas in the upper area. I may visit this dr.
just hate to start all over again.
Phyllis

Robert,
I just buy the cheap valerian from Wal-Mart. But, I had to take it for a month
to notice any difference.
:-)
Dot
robert <bisto52@...
Phyllis and Dot
The common theme in your messages is that you both had to do your own
research about medications and then persuade the doctors to let you
try something on the `schedule' Even then you are treated as
potential `junkies' and closely monitored. My doctor typically would
say, "There`s nothing more we can do for you" and would leave it at
that. It's me that has to push and has the pain.
Obviously we would prefer to stick to drugs of schedule, but they
have to work. Another consideration is side effects, I don't want to
take something that might damage my system. I'm trying hard enough to
do that anyway smoking etc.
I wonder about genetic connections, I had an uncle with Parkinson's.
My father may have had a movement disorder, not unlike tardive
dyskinesia. Both he and another uncle became pyscotic and suffered
from severe depression. Not much hope for me! :)
The other thing I picked up on was mention of Valerian. I have tried
it. I went to the health store and bought some capsules, tried one or
two and decided they were useless. Maybe I should have another look
at it. Can you give any more details of what to buy?
Regards
Robert
]

Phyllis,
I've had myofacial release before too and it does do wonders when done well. I
am not having anything done right now as I'm not sure what to do until the doc
has more answers. He's working on in and in the meantime I wait and catalog
symptoms.
I was diagnosed with tendonitis in my right shoulder a year before I got my
diagnosis of Dystonia. It hurt so much that I just knew if I could get someone
to look at it somebody would find "something." I did Pt for a while but since
it didn't address the underlying casue it didn't do much good and in fact, was
completely undone when I had a bad paroxsysmal episode about three months after
completing PT. Oh, well. Now that I get the botox it helps a great deal and it
hurts much less. Most of the time I can just ignore it and sometimes I take
demerol. I do good with demerol. On lortab you might as well chang my name to
"log" as that is all I am to anybody!!!
Well, about time to go so I'd better sign off.
Blessings,
-Dot
pbusk@... wrote:
WOW! Thanks Dot for the info. I do take a lot of controlled substance
but never venture from the prescribed dosages. Seems those who live in
so much pain need to do as their drs. allow and monitor. I have often
thought maybe I might end up in Betty Ford Clinic if I continue to take
the Klonopin and LorTab, but I have found to gain a better quality of
life, I will do what is best for me at this point in time. My family
does see a change in my thought patterns, memory, etc. But I think a
lot of this comes from the 9 Zanaflex I take on a daily basis. Combine
together it has been working for me for years now. I am not seeing much
torsion of my body. However, I can't stress enough the need to stretch
our muscles. When I was going to PT, I felt better than I had for
years. Of course, it was very costly to my insurance and I'm limited on
visits per year. Miofacial Release (sp???) was the most productive
therapy I received. I had a substitute PT one day who was skilled in
this procedure. She was able to completely unlock a frozen shoulder I'd
been dealing with since the muscles were so tight leading to the
shoulder. The facial (sp???) again, the glove-like muscle that keeps
our body all together is another muscle involved in my case and I would
imagine in a lot of people.
I have another question, does anyone have tendonitis in any joints such
as elbow because of weak muscles. Seems to be an onset after taking an
anti-biotic over a year ago. I can't seem to get it strengthened and
just wondered if perhaps anyone else deals with this pain as well.
Phyllis

Phyllis and Dot
The common theme in your messages is that you both had to do your own
research about medications and then persuade the doctors to let you
try something on the `schedule' Even then you are treated as
potential `junkies' and closely monitored. My doctor typically would
say, "There`s nothing more we can do for you" and would leave it at
that. It's me that has to push and has the pain.
Obviously we would prefer to stick to drugs of schedule, but they
have to work. Another consideration is side effects, I don't want to
take something that might damage my system. I'm trying hard enough to
do that anyway smoking etc.
I wonder about genetic connections, I had an uncle with Parkinson's.
My father may have had a movement disorder, not unlike tardive
dyskinesia. Both he and another uncle became pyscotic and suffered
from severe depression. Not much hope for me! :)
The other thing I picked up on was mention of Valerian. I have tried
it. I went to the health store and bought some capsules, tried one or
two and decided they were useless. Maybe I should have another look
at it. Can you give any more details of what to buy?
Regards
Robert
]

Hello Terry,
I've been taking valium for over 2 years, and I do not care whether I
am addicted or not. The main thing is that it works. It allows me to
function by helping to keep the painful spasms under some sort of
control. Incidentally, the other main weapon in my armoury against
Dystonia is chewing gum; it provides the infamous sensory
feedback 'trick'.
I have reduced the valium from 10 to 5mg by increasing Neurontin to
1800 mg. That might sound like a lot, but the minimum `therapeutic'
dose of Neurontin is 1200, and whilst it does cause some initial
dizziness and `stumbling around' (Elizabeth), it is ok when one gets
used to it.
Baclofen has been mentioned. I tried it, taking 40mg per day for ages
and finally just stopped it. It was doing nothing for me except cause
dryness of the mouth and run up extra dental charges.
Valium (diazepam) is the one with the bad press, but another,
Clonazepam is frequently mentioned, as a drug near the top of the
list, for Dystonia. Coming from the same family, presumably
clonazepam is just as addictive? I have considered asking my doctor
to let me try it, but I don't want to go there, given his attitude to
valium.
I hope that you are right that I have a caring doctor, I assumed he
was just protecting his own..
Kind Regards
Robert