Friends, my last post I told you my husband was having his device turned on, & he did, however, that evening he experienced high blood pressure & heart palpatations & started making strange & totally movements, lieing in bed could not be still, anyone else experience this?
We have emailed Neurologist but have not heard back yet
Dhill, have the doctors programmed the device yet?
Also, if the situation is alarming, I wouldn't keep the device turned on and immediately call the emergency department if it happens the next time you turn it on.
I had DBS on 4th August and was switched on on 11th August. I was set at just 1mA (which I understand is a milli amp) and on our way home from the hospital became very dyskinesic and couldn’t stop my body from writhing. When we got home I was in an uncontrollable state needing to move constantly! This was very uncomfortable for me and upsetting for my husband to watch. He emailed the DBS nurse having turned me off and she was wonderful and said he had done the right thing. He was then instructed to turn me back on the next day but at 0.5 mA.I remained on that strength till our next visit when I had further adjustments made. Unfortunately I’ve felt no improvement in my major symptoms which are severe cramps in my legs which give me awful pain which I find very hard to cope with. We’re back at the hospital in December so I’m hoping to get some relief then.
Are you still experiencing dyskinesia at the lower setting? Thanks
Not at all but I’m still getting the cramps which are as bad as ever.
Sorry to hear that, when you say cramps is that dystonia?
Yes dystonia is a condition in itself and manifests as cramps.
I hope you start feeling better soon!
P, I’m very sorry you haven’t experienced some relief yet from your DBS . I want to thank you for sharing that . My dr wants me to consider DBS and quite frankly it scares the hell out of me and I’m afraid of being worse rather then better after the procedure. Keep us posted as adjustments are made and your progress. Take care. Karen
Sadly, in general, doctors cannot be trusted to set forth all the possible adverse effects of medical treatments. It is incumbent upon us to research such matters for ourselves.
Park bear, you are correct on that and I have spoken to others who have had DBS and my dr gave me a list of classes and DBS support groups to attend to hear experiences and gain knowledge and understanding. Karen
Kwinholt, I hope that you have been given the information about the DBS center at the University of Florida. They say that they have the best program in the world and offer to"repair" mistakes made at other centers. If you are not aware of this center, here is the link:
movementdisorders.ufhealth....
I have no opinion one way or the other about their claim to be there best or one of the very best in the world. But I do have an opinion about the doctors who runs the center : Dr. Okun. He is widely known, well published, gives frequent talks, and does answer questions and concerns that Parkinson's patients have on his blog. His expertise, knowledge and experience is truly helpful. I have followed the doctor ever since I was initially diagnosed 8 years ago.
Here's the info on the doctor:
In fact the op itself wasn’t a problem - except unfortunately I got a bad delirium which manifested in paranoia and I was totally out of it for three days. However that only happens to between one and two patients a year and the staff were not worried. My poor husband was though especially as he couldn’t see me because of Covid-19.
Keep on tuning it. This refinement takes some time. Keep heart!!!
Check leads placement.
I hope things are better. It's a shame that your husband just had surgery and you're having to wait for answers to a pretty important issue. I hope they've gotten back to you by now. 
Deep brain surgery (DBS) dystonia
GOING INTO DBS SURGERY
Parkinson's but no rigidity ?
DBS surgery to help with “ frozen feet “
My husband is 3 weeks post DBS surgery!!! And doing GREAT!!! :-)
