suz-q

Hi Debbie, I am glad you were willing to share with us...First off, we
fought for years that this was not stress related illness and that it is
NOT psychogenic...the wheel has turned back to getting the psychogenic
especially on the rapid onset generalized dystonia...I do not buy that
for a minute and will continue fighting that--

Stress does play a part in muscle spasms because the stress chemicals
are thought to be the cause of spasm--too much adrenaline, like a surge.
Dystonia is not a condition that you can push your muscles through, too
much use, and they over-react--I have to pace myself around that-

I would first ask what meds you had taken for the epilepsy--many
medications lead to dystonia..many seizure drugs help dystonia--it
depends on the individual body too---

One thing that dystonia does not stop is the heart's ability to love and
children pick up on that - I was teaching 7th grade when it hit me, my
neck and then face and eyes get in the act if I get too much
pulling--The kids did not see why I could not finish out the year, and
neither did I

My son who is your age said something to me the other day, that
translated to my being so strong handling this--

I took care of my elderly parents for 2 years and learned that there are
social workers who can get services in that I had no idea of--Hospitals
have these social workers that co-ordinate services--right off you
should qualify for occupational therapy coming to the home--(it is a
general term, meaning to help you do home tasks, like bathing even)

Of course you need to be seen by a movement disorder specialist--but
they are not magicians, various medications will be tried, some made me
worse-be sure they start you with low doses

I am wondering if they switched your meds for epilepsy to neurontin?

The only people who understand this are fellow sufferers, so you came to
the right place for starters. There are other on line groups too-

Sue

m

I can't find the original post on my server, but did read it through yahoo.

Check your meds. and dose, make sure your pharmacy did not make a mistake.
I was given many meds that actually made my spasms worse and gave me spasms
in parts of my body that do not have dystonia.
Also my body requires dosage that is less than the dr. usually prescribes.
Do not stop any meds abruptly, it can cause adverse reactions.
Speak to your dr. on how to try lowering the dose, to see if that helps.
Make sure you are not taking 2 of the meds that might interact with each
other.
Mindy

zemedelec

<< Also my body requires dosage that is less than the dr. usually prescribes.
Do not stop any meds abruptly, it can cause adverse reactions.
Speak to your dr. on how to try lowering the dose, to see if that helps.


And your pharmacist is likely to know as much or more than your doctor about
the wilder effects of the drugs. Be sure to ask him about the drug's half-life
(when the amount of medicine in the blood is half the original dose.
This is important because if it has a short half life and your doctor decides
to double the dose (as mine did once) with something that, for instance, lowers
your blood pressure as one side effect, you could find yourself on the verge of
fainting or just out cold very quickly (do the math with a hypothetical dosage
and a four or six hour half life and you'll see what I mean.
This happened to me a few months ago and I was first nearly sleeping around
the clock, then so dizzy I had to crawl from one place to another--no more a
biped, for the time being.
zemedelec