Driving with dystonia

[Northrncitylady]

Hi...I'm new here as of today. I've had onset generalized paroxysmal dyskinesias dystonia, with attacks brought on by sudden movement. All through school I lived in fear of fire drills, because they always caused an attack and kids would act as if I were a freak because my arms and face would twist and be uncontrollable until the attack was over and I'd be able to get up and go. As with many others every doctor I saw said it was "in my head" because I couldn't "make it happen" in front of them. Anyway...I quit driving when I was expecting my first child and haven't driven since. I'm wondering if any others with the same condition as me drive, and if so do you have a specially equipped car, or maybe a better med than clonazapam? I'm longing to be able to drive, because it can be so isolating always depending on someone else for a ride. I live in a small town now where there are no busses. Thanks!!

[Lene]

Hi North...

Just a quick question. How much clonazapam do you take?

I cut mine in half during the day time hours so I can still function. I can take up to 3 a day. but I don't. Just like you said you cannot function, so I chipped away at the pill so I was able to move and not be so scared to drive etc. You body does get use to it. To this day I have not stayed home because of clonazapam. I just cut the dosage down to fit.... Good Luck and God Bless

[Northrncitylady]

Hi Lene,
I can take up to four a day, 3 being the norm, one extra if I need it. How did reducing the pill enable you to drive? I think I'd be scared to drive without it. I just don't know how I'd react (dystonally--new word) if there were a sudden accident or someone pulled out in front of me. My kind of dystonia is the kind thats brought on by having to "suddenly" move or get up when not expecting to. I forgot the tech name for it. Did you have to tell them you have dys for your drivers liscence? Why do you cut yours in half during the day? Mine are ten mg. Are yours stronger? So many questions!!! :) Thank you for answering. I have been offline for a few days writing an article for a small newspaper i volunteer for.
Thanks again,
North

[Lene]

Hi North,

Reducing the pill helped me get use to it and then after some time I was able to drive. I only take 5mg. I was a medication virgin, (so to speak)...so she (my movement specialist) kept me on the lowest dosage. I can take up to 3 a day if needed.

It sounds like your dystonia is different from mine. I have cervical dystonia. Now there are days I can't drive I must admit. Not sure why, its just I call it one of my "sick days" Yes they know I have a disability at the drivers license bureau. I have a disabled plate on my car.
I sing with a quartet for instance and this is a very stressful time because of the rapid pace we practice at. I must take one immediately as I get there or else I can't sing. They love it when I do take one cause I mellow out...if ya know what I mean. If I sing too long the pain travels up my skull/scalp on the right side and now it happening on my left. I am fearful my singing will be coming to an end soon. Its the only thing I do after years of it (all my life) that I accomplish and do it well. I can no longer sing too high as it pulls so badly it put me to bed a few weeks ago.
My reflects seem to be fine while on it. I could not go anywhere without it. I just reduce so I am not to drive. My main problem is shopping..In and out of the truck, carring groceries, laundry, Its impossible!! I wear down in just a few minutes & the next day I pay for it with pain and bed rest. My time to go do something is about 2 hrs on a good day. I cannnot sustain much.
I probably gave you more information than you wanted....sorry I am home alone during the week and I get lonely when I am not singing. Please feel free or anyone else for that matter to e-mail me to [e-mail]

[Northrncitylady]

Hi Lene,
thanks for writing back so soon. Yes my dys is diff from yours, but the stress and depression since I was a little kid, the taunting at school, fear of having to move suddenly without warning, like fire drills, even someone shouting "come here quick! you gotta see this!!" or suddenly calling my name after waiting at a doctors office. I too live for God and love to sing. When he started giving me songs, I knew He wanted me to sing them to minister to others, and to go up in front of the whole church with my guitar I prayed and prayed each time that I wouldn't have an 'attack', and He enabled me to do it. I believe too, that those of us who are close to God can pray for each other and others who have this disease. I wear down quickly too. I will email you, and like you anyone else can feel free to email me too. Mine is [e-mail] Thanks! "North"

[kiwi beaver 1]

i got my liscence and my left leg wobbles uncontrollably on and off, not all the time. never had a prang yet knock on wood. i drive automatic though and find that easier for me than having to change gears.
I knew a man with movement in his neck and he drives with his head turning everywhere. he is a farmer too so probably drives tractors and things too.
I with my husband and his family own kiwifruit orchards and i love being able to drive the tractors to mow under the vines, if i can beat my young son to it.
you just need to start off with a car you feel comfortable in and maybe just start with driving to the shop to get milk or something and go further and further as you get more confidence that the disorder won't get too bad.
I can't drive long distance yet as i get quite tired, but i think lot's of people are like that. but i can drive to my sisters which is 45min drive and all around the region for the kids soccer at different towns. but now soccer is finished and i don't need to drive over those places til next year i will lose my confidence fpor a bit again and have to get it back.
my neurologist says i have dyskinesias and i can walk into his room and seem quite normal but once he starts his test and things it all comes on then, once he stops looking it eases up again.
it's always there though as i can't write that well, my hand tenses up.
That'sd the reason why doctors and people thought it was in my mind because it wiould come and go so quick.
but with the writing always like it was even when noone is watching should have been a clue and the way my foot turns out .
you can't put that on all day long can you.
karen

[Northrncitylady]

Hi Karen,
I'm going to get my drivers permit again and really try for a liscence. I've had about 5 permits in my life and was a 'good driver', but when I started having kids, I stopped driving, not wanting to have a brain misfire attack on my body and cause an accident. Now that I have meds, and discovered a new movement disorder doctor in the next city, I'm going to take baby steps to get to driving. Thanks for the encouragement!!

[smoral]

Hi,
We have something in common I also have paroxysmal dytonia and I do understand what you have had to deal with. For me the worst nightmare when I was in school was when I was sitting at my desk and the teacher called me to the front of the classroom. Or after lunch when I would stand up and pick up my tray when leaving a table. It has been difficult for me to find someone else dealing with this condition so after searching the internet I found you. Have you found others. I also want to ask do any of your family members suffer from this? although none of my siblings did I have three children that also have this condition.