DBS management

[chalnunn]

I had DBS in late August. I lost 20 pounds waiting. I had bradykinesia mostly in the lower extremities. I fractured my femur16 months ago and with two back surgeries for severe pain and nerve compression from bad discs I could not exercise, my gut slowed and I stopped absorbing my levodopa whenever I would eat food. This led to me taking 2-3 levodopa pills every three hours with the roller coaster of concominant medication side effects. This means you have to take your pills even though you’re eating and it is guaranteed to get a wearing off effect or what I call a low about an hour after I eat. I am miserable during this time. I am very weak, I can’t type, I can’t focus, I can’t talk and it increases the pain from my existing injuries. I have been on the roller coaster with my meds as I had to take so much to try and control this that I was either hyper or couldn’t move.

DBS completely stopped the dyskinesia ( 2 leads, Medtronic, globus pallidus). It seemed to lower me a little bit in my Parkinson’s control. Have a little bit more shuffling have a lot more low spells. I have not been able to get off any of my meds. I do well after about 11 PM when not eating and I don’t need any meds all night. When I eat a heavy dinner meal, it is guaranteed i’ll get a very low wearing off effect and I have to brush my teeth and get a shower in quick because I can’t move about an 1- 1/2 hours after eating. It also takes another hour and a half for me to get out of this low or 1- 1 1/2 hours for the last dose to kick in and get me to me out of this low. That’s pretty miserable existence for three hours.

I was hoping DBS was going to help me smooth out this roller coaster, reduce my meds allow me to eat normally again without fear. It has not done that so far.

I’ve had about 10 weeks experience with three different adjustments. The dyskinesias are gone and that is really great..but I need to minimize these lows as they are affecting my quality of life as much as a back pain which has been slow to improveafter surgery.

Any advice? Any experience like this? Any advice on how I can reduce my Levodopa? They suggested I try Crexont and say I would be a good candidate for the sub cutaneous delivery system when Medicare approves it. Any advise or experience here? The Crexont is out of stock and waiting for that to come in

I am a retired Gastroenterologist and I push way too hard and will not give up.

I am open to any advice. DBS adjustments and getting rid of the wearing offs, Medtronic, placement of leads, trying Crexont, Subcutaneous delivery of levodopa, pain associated with wearing off. Stopping the dyskinesias has been great, but I felt better when I had them.

Is there a better place to post this where I could get more exposure and more potential responses?

Thanks fellow sufferers

[limcheeese22]

it could be the DBS setting still at a lower side.

try to increase the voltage or pulse width when your body gets use to the DBS.

i remember my pulse width increased from 60 to 90, i felt the 80% old me is back

[Juliegrace]

Three adjustments does not seem like very many. I had three in three weeks with another one scheduled after Christmas. I think there should still be room for improvement.

[Farooqji in reply to Juliegrace]

Wishing you further improvement

[Gallowglass]

I’m the same way. It’s occurred to me that my habit of automatically and unconsciously pushing myself to complete tasks is my problem. Drains me of dopamine On the rare occasions when I can truly and deeply relax and meditate on the divine i feel much better

[Lulover]

Thank you for sharing your experience. I’m expecting to have the DBS procedure done in late January or February. Obviously having realistic expectations will be helpful and you have underscored that for me. Please continue to share your experience and I will be sharing mine as well. More information contributes to better decisions.

[Erniediaz1018]

Any changes? I hope so.