Dealing with Dystonia

Avatar for lsb210
iVillage Member
Registered: 07-18-2000
Dealing with Dystonia
10
Tue, 01-22-2013 - 10:21am

Ouch. Excruciating. Jarring. Takes my breath away. Dystonia sucks. Anyone else have this as a secondary issue to your PD?

I've had Dystonic episodes in my neck in the past and more frequently in my toes. When it happens in my toes they suddenly curl in to this painful position, almost as if they are doing the Star Trek Vulcan sign. They stay frozen in that painful position and I have no ability to move them until the episode passes and then it's perfectly fine. I've had a few episodes of Dystonia in my neck that lasted over a week, each time requiring physical therapy to get movement back.

This time it appears to be in my hip and/or upper thigh. I don't know how to explain it other than a combination of labor pains, funny bone, charlie horse type muscle spasm pain that takes my breath away all located in my hip and upper thigh. It began last night, at first feeling like I cramped up and just needed to roll over and change positions, but by morning I realized my leg was locking into a painful position. I doubled my PD medication and am resting, hoping that this episode will past. I made an appointment with my Dr for 1140. I really need to find a new neurologist. My old one closed his practice in July and I've been having my GP refill my Sinemet. This episode makes me realize I really need to establish with a new one sooner than later. 

Because I've had Dystonia before in other places I am almost certain this pain in my hip and leg is related to Dystonia. It's a very specific type of pain and that's exactly how this feels. OUCH. 

And it feels good to be posting again. (((HUGS))) I'll let you know how the appointment goes. 

Photobucket
Avatar for lsb210
iVillage Member
Registered: 07-18-2000
Tue, 01-22-2013 - 7:34pm

Good visit with Doctor. After we talked about my Dystonia and Parkinson's I said, "you know, I really can't complain. Considering I've been living with Parkinson's for 13 years, I think I'm doing fairly well over all". He said, "you're doing so well because you have a really good attitude about it." He made my day :-)

He recommended a new neurologist who I will call tomorrow to get an appointment, although I'm sure it could take weeks if not months to get in to see him. I really miss my old Neurologist and his practice. He was such a kind and caring man and very supportive of my less-is-more approach, taking the smallest dose possible therapeutically. In the meantime, he gave me a script for a muscle relaxant, pain medication and agreed that I should double the sinemet as needed. I'll let you all know how I feel in the days ahead. Stay tuned...

PS, having trouble posting tonight. Hope this attempt works better than the last few...

Photobucket
Avatar for martycee2
iVillage Member
Registered: 04-22-2003
Tue, 01-22-2013 - 10:33pm

Lauren Sue   It's great to see you are posting again! Sorry to hear you are having problems with dystonia. I know from my own experience that it can be excruciating. I remember my first experiences with dystonia. I was driving to work in rush hour traffic when suddenly my toes started to try folding in my shoes. Very painful to say the least! I had that happen on several occasions before I was able to discuss it with my neurologist and found out what was going on. I can’t recall just what adjustments he made with my meds but it helped. I still occasionally experience it but not nearly as extreme.

Good luck with that and with the new neurologist – hopefully you will find that you don’t have to wait too awfully long before getting in.

Avatar for lsb210
iVillage Member
Registered: 07-18-2000
Wed, 01-23-2013 - 11:44am

Thanks Marty! I called the new neurologist and first available appointment was 2/8 so I took it. I was pleasantly surprised that I was able to be seen so soon considering I'm a new patient. I really expected it to be a month or more. In the meantime, my GP said he'd help me in whatever way he can. I am still in a great deal of pain.

Hoping and praying it relaxes back to normal soon. Longest episode I ever had with sustained Dystonic freeze was 2 weeks in my neck (which required Physical therapy to get movement back). I am really hoping this one passes soon. I can not even begin to describe what it feels like, perhaps a combination of stub-your-toe-hit-your-funny bone-run-over-your-foot-with-a-car spasm. Something like that. I have to hunker down in a weird position and not move and remain that way or else I jump out of my skin, scream, cry and lose my breath. Perfect condition for a drama queen. Man these drugs rock. So doped up. I haven't had any alcohol in over 2 weeks, but right now I feel like a frat boy after a trash can full of jesus juice.

Photobucket
Avatar for martycee2
iVillage Member
Registered: 04-22-2003
Wed, 01-23-2013 - 4:06pm

"Man these drugs rock. So doped up. I haven't had any alcohol in over 2 weeks, but right now I feel like a frat boy after a trash can full of Jesus juice." Surprised

Wow Lauren Sue...!  I seriously would not care to experience the pain that you’re dealing with. I know my few experiences with dystonia were not only painful but also very disconcerting!  However, it sure sounds like the meds are helping!  Wink

iVillage Member
Registered: 10-11-2002
Thu, 01-24-2013 - 2:32pm

Lauren Sue, sorry to hear about the dystonia period your going through.  For what its wortrh, I havent had any dystonia episodes since.  I made my last meds adjiustment.  If \was too much sinemet in my case.   The doc had me take a lower dosage along with Regular and time release sinemet.  I also think Stalevo helped.  I hope your doc finds the answer for you.  Dystonia is no picnic





Community Leader
Registered: 10-22-2001
Fri, 01-25-2013 - 2:24am

~hugs~

I think you Rock!

Attitude is I think what helps me.

You are Amazing...:)...

Nightangel
Community Leader
Registered: 10-22-2001
Fri, 01-25-2013 - 2:27am

"Man these drugs rock. So doped up. I haven't had any alcohol in over 2 weeks, but right now I feel like a frat boy after a trash can full of jesus juice."

This was just so funny...absolutely hilarious...;)...
Nobody realizes how much a "Sense of Humour" helps us get through things.
Loved your post!

Nightangel
Community Leader
Registered: 10-22-2001
Fri, 01-25-2013 - 2:30am
Nightangel
Avatar for lsb210
iVillage Member
Registered: 07-18-2000
Thu, 01-31-2013 - 1:07pm

Thanks everyone. It was a painful few days but the episode finally passed. Then I was very busy trying to catch up on all the things I couldn't accomplish when I was dealing with the dystonia. I still have a twinge of tightness and hope it doesn't lock up again, but it's tons better than last week. Now to continue catching up. 

Photobucket
Avatar for martycee2
iVillage Member
Registered: 04-22-2003
Thu, 01-31-2013 - 5:30pm

Great to hear you're doing better Lauren Sue. I was just about to start checking on you and Chris. See a few "Chris" posts on FB however we aren't hearing much from her. I'm sure she's busy with the new job etc. but it's always nice to hear how you two are fairing with all the things you have to deal with.

BTW: Wouldn't you think iVillage has had ample time to resolve some to fhe issues we're having here? I would surely prefer to use IE to access this board much the same a Chris. IE is sooooo much cleaner and easier to browse with. Still I've gotten better with Firefox but still have issues that are frustrating.

Such as I have to 'login' every time I access this site. IT DOES NOT matter that I may have just logged in ten minutes earlier! If I go out to another web site and then check back, I have to go through the "login" process again! And - YES -  I am selecting the "keep me logged in" box on the login.

Another frustration is the only way I can get to an option to 'login' is to open a string and look for an 'options' icon on the right side of the page. Any other option to login takes me out of the group and to the iVillage home page. When I 'login' there and then navigate my way back to the boards, I am logged out again!

When replying to a post I cannot see the post I'm responding to - if I want to reference a point I need to open the board in another tab and then go to the post in order to see what I'm trying to reference. AND - MOST IMPORTANTLY - I really need "SPELL CHECK" - my typing has really begun to suck big time and I'm continually making typos. (It's no fun, and very time consuming, to have to re-re-re-read stuff I've typed just looking for typo's  -  I know they're in there someplace.....!

Just a few of my frustrations - still the biggest is the lack of usage by others here. If it weren't for Ruben and recently Lorie, this would really be 'ghost' board! :-(

Hope you are able to continue here for a while! We miss you when you're gone so long! And besides, maybe with your help we can get some of these issues resolved.

Another thing I just picked up on is that this was a reply to your post but I did a "Preview" to look for typo's then edited and posted - I see it now says "IN REPLY TO MARTYCEE" - Duh????????????