Still struggling to find best meds after DBS
Posted 09 March 2013 - 09:52 PM
I take my tablets at 6.30 am, 9.30 am, 12pm, 3pm, 7pm. My body is relaxed between 8pm until 4am . I sleep perhaps from 9pm to 1am and from 4am to 5.30am. Some discomfort starts then from 5am to 7am. I become very uncomfortable, shuffle a lot, am unsteady but not shaky . From 7am to 8.30am I feel normal and energetic and do most of the work for the day but from 8.30am till 9.30am I shuffle, am unsteady and bad shakes. Shakes again from 2pm to 3.30pm and 5pm to 6.30pm. I still don't know whether my shakes are dyskinesia or dystonia because the treatment will be different. Shakes are not predictable and more prevalent when I do computer work or talk on the phone . I still don't know whether my shakes are caused by too much or too little medication. They tend to happen when the medication is wearing off. I do not know whether the symptoms increasing and difficulty walking is the result of the progression of parkinson or the balance between electric stimulation and medication is not correct or the medication is not correct.
Posted 10 March 2013 - 08:18 PM
Before DBS I was taking around 18 pills of 25-100 Sinemet orally, and no other PD meds of any kind. Right away post operation my doctor suggested I take what I needed but in half pill dosages. Nearly 7 months have passed and I take maybe two full pill dosages and 3 additional one-half pill dosages in a 24 hour period, only. No longer any freezing whatsoever, but tremor in my left arm now and some kinda pain in my right ankle which seems (to me) to have a neurological component. Like you I have difficulty determining if tremor is increased, decreased or even brought on altogether by my medication. I hope this helps you in some small way to get a handle on your symptoms.
Edited by Rogerstar1, 10 March 2013 - 08:19 PM.
Posted 04 April 2013 - 01:42 AM
Confusion and cognitive is the biggest issue. Neuro does not want to prescribe anything to help because it conflicts with the PD meds. They Rx meds known to cause hallucinations, anxiety, confusion. Then when it happens hand off to psychiatrist. Psych hesitant to Rx anything, especially because PD + DBS. Result is patient recieves no treatment and is just left to deal with it on his own. We are so pleased with physical improvements but daily struggle with confusion, paranoia, etc. Is overwhelming, significantly affecting quality of life.
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users