Patienten - Erfahrungen und Berichte II

Patient ´s Experiences and Quotes with DBS on OCD


I am back again: I can feel myself  again. I can feel the ground. (…) the colours    are brighter. (…) Before there was just fear, now I am back again. ’ (P7)

‘It is as if  you are very much in love all of  a sudden. (…) As if you become much lighter somehow, but in very pleasant way. ’ (P1)

 ‘I f elt very emotional and I felt I was becoming happier. Yes, and less anxious.
 (…) And somewhat more indifferent. Like: What do I care?’ (P2)

 ‘When the DBS was turned on, that was very strange! I had this pleasant feeling
  All of  a sudden. (…) Right before, I had been quite negative and then, two
  minutes later, I was thriving. (…) Before I saw all the restrictions, you know,
from having this disorder. All the things I cannot do. (…) But after the DBS was turned on, I thought:  “oh but I can do this ”. ’ (P3)       

‘I started talking, also to all those doctors around the table, and I didn't look  obsessive-compulsive disorder.   up to them anymore, I just regarded them as ordinary humans, you know. ’ (P14)


Patients often describe their changed experience in terms of mood:
‘With the right settings, I am in a better mood. I can immediately notice that. It's     … my breathing is calmer and more relaxed. (…) I f eel less tense and so, well   have less the need to do these compulsive actions ’ (P3)

    ‘the change in my mood, in my feeling of  hope and courage, is very noticeable in  my urge to make plans. (…) to think beyond where you are at the moment. ’ (P1)

Long-term effects include spontaneous actions, changes in social interactions, the ability to enjoy, and even the experience of being oneself:

 ‘It is as if  the shutters have been opened up. I can now take a much lighter   perspective on things. ’ (P1)

  ‘I make plans, positive plans (…) [Before the DBS] I would not have dreamed    about setting up an online store, or maybe I would have dreamed about it, but    then like  ‘that will never work out anyway ’. But now I think:  ‘oh, I can give it   try. ’ (P3)

    ‘I f ound myself  picking up the phone, and even saying yes to an invitation. Just like that. After I hung up, I thought:  ‘what have I done?’ (…) But then I thought: ‘so what?’ (P4)

‘I found myself  doing things without thinking. That is pretty scary. ’ (P10)

`I know I actually have a spontaneous nature. (…) And I think I am getting closer  now to who I really am. ’ (P5)

 ‘I can enj oy the things that I do more. Bef ore it was only obligations, now it is
  sometimes even f un, you know. ’ (P3)

‘I have changed, yes. I have come more out of  my shell, so to speak. I can enjoy   ‘My world has become so much larger. Before, I just lived in a cocoon of
  compulsions. ’ (P14)

    ‘And than I f eel that, it is incredible, I f eel that my f ear is decreasing, so then I am not having a cup of  coff ee with a psychiatrist, but with another human being!’ (P13)

‘I dare to speak up for myself  more. (…)  hat is a whole new dimension. People   are surprised sometimes:  “she has become a fierce lady ”. ’ (P2) 

‘I am less anxious, and that also expresses itself bodily. (…) I don't get into a panic that of ten anymore; I am better able to find solutions ’ (P5)

 ‘With the right settings, I am in a better mood. I can immediately notice that.
   It's… my breathing is calmer and more relaxed. (…) I f eel less tense and so, well,
  I have less the need to do these compulsive actions ’ (P3)

‘Af ter the DBS I have become calmer, I don't panic so easily anymore ’ (P5)

´  I dare to take risks now. I have become much more daring, more impulsive  also. ’ (P2)

‘I don't dwell upon things as long as I used to ’ (P5)

‘I dare to take more risks ’ (P5)

‘I dare to do things again ´
 ‘I am somewhat calmer now: I can keep my attention focused on my work    instead of  the compulsions ’ (P3)

  ‘I used to have more control. Now my actions go faster than my thoughts. (…)
   My actions now just go automatically, instead of  how I used to do it. ’ (P10)

   ‘What I did not used to dare, the things that I did not even dare to begin with, I
   started doing them. I still found it scary, I was just as afraid of it, but I did it
   anyway. ’ (P2)

   ‘I am better able to put things into perspective. Not so black and white anymore, but more looking at things f rom both sides, so more grey, you know. (…) I am not so quick to judge anymore (…) but I stay careful who I can trust and who not ’ (P5)

    ‘The intensity, the anxiety, and the amount of  compulsions have diminished. (…) as if it is crumbling away in all aspects ’ (P4)

    I did not quite notice the changes at first, other people pointed me to what was happening. And only then I started to think and realized what had changed ’ (P5)

‘My wife pointed out to me that the casing that I built around the pond looked a
 bit sloppy. I had a look, and she was right! I would never ever deliver sloppy work. It always had to be perfect. And now, I saw it was sloppy, and you know
   what? I did not even care!’ (P14)   

Now I think: things will work out somehow. But before, nothing would j‘ust   work out ’. ’ (P4)

  ‘I can have much more normal contact with others now. My daughter or son-in-    law call and invite me to a birthday party, or ask if  they can come by at my   place. Yes, and then without thinking about it, I just say yes. Because: I want to   come, but then I realize: what am I saying? I really have to get used to myself,   you know. Those excuses always, never being able to make any appointments…   and then I j ust say  ‘yes, sounds good ’. And I think: Is that me? It is a bit strange.

Source for this Quotes:
PMC: US National Library of Medicine and Mental Health:
The phenomenology of deep brain stimulated – induced changes in OCD



The contacts are inserted in my brain, they have a number of different points and the team has the choice of a number of different settings. At no point do I know the setting which has been chosen.
On Thursday 7th of August a voltage (the exact voltage unknown to me) was passed through a contact point.
2.5 hours later, 60% of symptoms were gone.
The next day and the day after the voltage was increased. By Monday 11th 95% of the symptoms were gone.
Rarely is this phrase more appropriate
What the fuck !!!!!!!! I am Awesome!!!!
I have so many people to thank, I apologise if there is anyone I have forgottent and many people are anonymous since I have not had time to ask permissions.