Dystonia??!!

Hello all,

 

I am experiencing severe withdrawal from progesterone after having survived a horrific serotonin syndrome and klonopin withdrawal years ago.  I cut my progesterone dose last month and developed severe withdrawal symptoms, near delirium.  I updosed the progesterone and have been hoping to stabilize since.  I have improved, but I am still very ill.

 

I have had pain in my toes for some time, however, this evening, the right-most four toes on my right foot bent downward while my big toe bent upward in a painful spasm.  Also, this morning, I experienced painful neck tightness on one side. 

 

I also have light sensitivity and twitches, jerks, and muscle fasilations.

 

Can this be dystonia developing?  Or could regular cramps cause this?  Please help.  I am really struggling.

 

Do I have Parkinson's disease or is this withdrawal?  Will it go away?

 

Help,

 

BraveGirl

 

 

Hello Bravegirl,

 

I am experiencing exactly the same.  I'm currently on just progesterone and have right facial and neck dystonia which increase in intensity premenstrually.

I've had a plethora of diagnostics and imaging and everything comes back "normal".  This appears to be tied in with CNS sensitization.

 

ss24

I just read and replied to your reply to my post re Oculogyris dystonia but was logged off and it didn't go through (I guess it took me more than 60 minutes to write due to my brain fog...will try again). Logged back on and saw this.

Thanks for your reply. I too question Parkinson's (PD) and I was misdiagnosed with PD at one point during this process. I looked very much like a PD patient but didn't respond to Levodopa/Carbidopa, leaving me to believe it was tolerance withdrawal from benzos prior to my taper. I happened to be a physiotherapist specializing in treating PD at that time and lost my job due mostly to the cognitive sx and to a lesser degree silent migraines and dizziness/vertigo. Anyway, I have worked extensively with PD patients and recently lectured advanced therapy students on PD so I am up-to-date. What you describe does not sound like PD.

The fear of PD is up for me again because of episodes of dystonia, specifically oculogyris. The YT vid that best shows what I had is

(sorry don't know how to link). The one you gave me wasn't quite it although I have had the odd quick eye rolls up that that man had prior to his trying to sleep.

Going to try and go back and re-write my reply to you and the others who responded to my post now. I think it further relates to this post of yours.

In gratitude.

 

 

 

Ss24,

 

Do you attribute your dystonia to the benzo withdrawal, progesterone, or both?  Also, what form of progesterone are you taking (oral or cream) and how much?

 

Thanks in advance,

 

BraveGirl

Ss24,

 

Do you attribute your dystonia to the benzo withdrawal, progesterone, or both?  Also, what form of progesterone are you taking (oral or cream) and how much?

 

Thanks in advance,

 

BraveGirl

 

Bravegirl,

It is most definitely from the benzo.  It began following the c/t and subsequent reinstatement. 

I'm on 100 mg cream.

You?

 

 

Just wanted to mention that it is also possible that the klonopin was covering up dystonia that developed from another medicine, since you said you have had toe pain and such for a while.  That being said, my toes and feet (and fingers and wrists) have curled and twisted like dystonia since stopping klonopin