Dopa Responsive Dystonia

[Annabell901]

I am a 32 year old female and have been on sinement cr 50/200 for 23 years For early onset Dystonia. I have had my first incident this week with my medicine not working. I have been very fortunate and only take one tablet every night before I go to bed. The medicine has always made me very tired. So needless to say I was quit stressed out when I woke in the morning with muscle spasms and was very difficult to drive to work since my toes were twisting inward which made matters worse and the only logic I had was to take more medicine. I did end up taking 4 additional pills. Triple what I would normally take. I was trying to get relief and had no idea how. so I was thinking I dont have enough medicine in my system.(the nurse did tell me DONT ever take that much again) I will see my neurologist in a couple of weeks and will talk to her about this. I don't know why this just happened out of the blue! The only possibility I can think of is Dystonia in any way effected by a women's menstrual cycle? That will be one of my discussions along with an alternative to meds.

[brilmont]

It's been over a year since you posted about mentruation and dystonia.  Hopefully you have found an answer to your question.  If not, maybe this will be helpful.  I'm just now putting it all together but I believe that mentruation would worsen the symptoms of dystonia IF mentruation lowers dopamine levels and elevates prolactin levels. I haven't researched this but I do know that low levels of dopamine can cause dystonia.  I get the muscle cramps in my neck and head and have had these symptoms for over 20 years.  I'm just now figuring it out myself as numerous doctors have had no answers for me.  I have a prolactin secreting pituitary tumor which I believe has lowered my dopamine levels causing the cramping.  Good luck to you.

[DrNoopurMD]

Hi,

How are you?
Early onset dystonia is characerized by twisting of limbs like feet, hand, legs and arms. Genetic mutation is the most likely cause of early onset dystonia.
It is not clear if the symptoms of dystonia worsen at the time of menstruation.
Oral medications are mainstay of treatment of dystonias. Non drug therapies for dystonia include physical therapy, acquatic physical therapy, occupational therapy and speech therapy.
Hope this helps!