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Family Physician
Family Physician, Doctor
Category: Medical
Satisfied Customers: 2418
Experience:  GP with over 27 years experience including emergency medicine
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I had DBS surgery in 2014 for generalised dystonia. Just

Customer Question

I had DBS surgery in 2014 for generalised dystonia. Just after I developed an exaggerated startle response and was put on 0.5 mg clonazepram increased to twice daily when it failed to help. Since then the myoclonus has continued progressing and is now 100 times worse. I have very vigorous full body jerking during which I regularly full over backwards. Sometimes I react to sound or anything that takes me by surprise at other times it can occur for reasons unknown. If sitting on a chair it can tip up onto its back legs, i have been jerked out of an armchair and out of bed. If holding onto my 21lb weight four wheeled rollator during an episode it will just tip over. I have been having a high number of falls ( fourty in just over three months plus numerous near falls). I was not due to see my neurologist again until 04 Nov but due to the high number of fulls was advised by an A&E doctor after one fall requiring stitches to get an earlier appointment.
I phoned the DBS team and saw the DBS nurse four weeks ago and was told the falls caused by the motor control problems is just progression of. my dystonia which I accept and was told to double my clonazepram dose for the jerking and to wait until my outpatients appointment until 04 Nov.
The clonazepram increase has done nothing to help. This past week two friends witnessed me have a vilolent jerking episode whilst relaxing in an armchair and both said they witnessed that prior to the jerking I appeared vacant, my eyes rolled back in my head then my eyes temporary closed before I started jerking.
Another friend stated recently I look exactly the same prior to the jerking than to her niece who has epilepsy.
Another friend stated that whilst sitting next to me recently my whole left side went rigid before I jerked.
I am only aware of the jerking and have no idea I show other symptoms prior to the jerking a few people have said they thought I have epilepsy. Prior to my DBS the surgeon told me some people are left with seizure after DBS. Now I wonder if I could have a form of epilepsy or don't know if the vacant spell, eye rolling and muscle rigidity is just part of some types of myoclonus. I am confused and find it a bit scary and loosing my confidence at going out alone. I am reluctant to phone the DBS team yet again in case I get labelled as just being paranoid or making too much of a fuss but don't feel I can cope waiting to November.
I just need someone to talk to and explain things to me so I understand what is going on. It feels that one cares or understands how I feel.
Submitted: 1 year ago.
Category: Medical
Expert:  Dr. Phil, MD replied 1 year ago.

Hello. I'm Dr. Phil, licensed and practicing internist. Excellent service is my goal.

Expert:  Dr. Phil, MD replied 1 year ago.

any other medical issues?

Customer: replied 1 year ago.
Customer: replied 1 year ago.
No, I just want to know is it possible from my described symptoms It is possible I may have a form of epilepsy. I have a brother who has epilepsy do it is in the family.