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vietkieu

Still struggling to find best meds after DBS

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I don't know if there are some parki people who are totally confused like me. I had parki for 10 years and DBS since April 2012 and still on meds 5 times a day. The neuro prescribed 5 Stalevo 100/25/200mg but said if there are side effects then go back to 5 madopar 125mg. I also take 1 Sifrol (pramipexole) ER 2.25mg in the morning. 5 Stalevo gave me more energy but I had violent shakes which I put up with for 2 weeks then I changed to 5 lower dosage Stalevo 75/18.75/200mg but I still have the shakes . I believe Stalevo is a stronger med so I went back to 4 and 1/2 Madopar 100/25mg and 1 Stalevo 75mg The shakes are less but still remain. I only sleep 3-4 hrs per night but I stay in bed with closed eyes so still feel rested. I get up 3-4 times to go to the toilet.

 

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.

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Hi VietKeiu -

 

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

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My husband, 64 yrs 12 yrs PD, DBS left side of brain=right side May 2013. Physical functionality greatly improved. Pre surgery, Stalevo 9 x per day + Requip 2x day. Post surgery, 1 Azilect per day + 1/2 Sentimet (Carb/Levo), tab 25-100mg 2x per day. All involuntary body movements have disappeared. Extremely fatigued for months after surgery, rarely getting up for any length of time. Azilect seemed to help the most and allowed the sentimet med to be minimized.

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.

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