DBS. Should I be more patient?

[gingerj]

It's been 3 months since my DBS surgery and 6 weeks since switch on. Since then I've had two follow up conversations with the programmer, both telling me to leave my medication alone and increase the stimulation slowly. Since switch on I've been troubled by severe dyskinesia. Its exhausting.

My next Neurologist appointment is in late June followed by my next programmer review.

I'm coming under pressure from my employer now to return to work, with a face-to-face review appointment tomorrow.

I decided a few weeks ago to begin reducing my meds along with increasing the stimulation.

My stimulation has now gone up to 2.0 from 1.0.

My medication is now just 6×100mg stalevo from 9×100mg.

Apart from the dyskinesia and occasional headaches I'm quite symptom free.

The only times ive had no dyskinesia are days when ive held off from taking any medication at all. Take stalevo and within 30 minutes my left leg kicks off followed by the rest of me.

I've been told that due to the high amount of stalevo i was taking i will never be completely off meds. I can accept that but not if it means this dyskinesia.

Just wondering if anyone else is having or has had this experience with DBS and what they did about it?

Did you manage down your own medications and increase your stimulation?

Am i expecting too much too soon?

Any advice is most welcome.

Thanks.

[park_bear]

Not had DBS but curious. Are you able to adjust the intensity of the DBS stimulation yourself? Do you get symptoms other than dyskinesia if you reduce your stalevo further?

[gingerj in reply to park_bear]

Hi park_bear Yeah i can raise it up to a maximum of 4.0 from a minimum of 1.0 in 0.1 increments.

Regarding stalevo. Ive been looking to expand the gap between doses. Ive currently extended from 2 hours initially to now 3 hours.

I took part in DBS clinical trial at the local university a couple of weeks back. They asked me to stay off meds for the day and leave the DBS on. I was at 1.7 both sides by then.

I had told them about the dyskinesia but they still wanted me to participate.

I felt like a fraud. I had no dyskinesia at all.

With just DBS i was ok to travel. Upper body quite stiff and right arm tremor was evident. The trial involved me being off DBS periodically, and the difference even at 1.7 was evident.

Im struggling with pain in my left hip that is probably arthritis brought on by many years of fighting dystonia whilst walking my job, then having 3 weeks doing nothing after the surgery. The dyskinesia is really aggravating this.