Cyborgs are us
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Eric
May 15, 2010, 9:46:28 PM5/15/10
to DBS for Depression
Has anyone had minimal success and then a large boost from a change in
settings. How many unique settings are there?
settings. How many unique settings are there?
Rich Hayward
May 16, 2010, 6:06:21 PM5/16/10
to dbs-for-d...@googlegroups.com
Eric,
When I woke up from the surgery I was depression free. I'm told this happens with some Parkinson's patients who get implants. This lasted for the most part for the first 6 months (I believe my device was off). After 6 months every time they reporgrammed the device I experienced a different extreme. One month it was rage, then mania, then depression and I finally started cutting on myself for the first time in my life. They tried numerous med's to control these problems, but I ultimately had to turn the device off to make any difference. After the 12th month you can sign on for another 4 years, but they only see you every 6 months. Some I've heard are able to go in every 3 months for reporgramming, but I was told that by month 12 we should all be happy little lab rats and any further reprogrammings are just tweaks.
I believe each wire has 4 leads and the strength of the signal ranges from 4 to maybe 8 or 10. I'm not sure if they program it based soley on the MADRAS tests or if ANS has some protocol where each person gets predetermined changes, but I think it is the latter.
Rich Hayward
> Date: Sat, 15 May 2010 18:46:28 -0700
> Subject: Cyborgs are us
> From: dittma...@gmail.com
> To: dbs-for-d...@googlegroups.com
When I woke up from the surgery I was depression free. I'm told this happens with some Parkinson's patients who get implants. This lasted for the most part for the first 6 months (I believe my device was off). After 6 months every time they reporgrammed the device I experienced a different extreme. One month it was rage, then mania, then depression and I finally started cutting on myself for the first time in my life. They tried numerous med's to control these problems, but I ultimately had to turn the device off to make any difference. After the 12th month you can sign on for another 4 years, but they only see you every 6 months. Some I've heard are able to go in every 3 months for reporgramming, but I was told that by month 12 we should all be happy little lab rats and any further reprogrammings are just tweaks.
I believe each wire has 4 leads and the strength of the signal ranges from 4 to maybe 8 or 10. I'm not sure if they program it based soley on the MADRAS tests or if ANS has some protocol where each person gets predetermined changes, but I think it is the latter.
Rich Hayward
> Date: Sat, 15 May 2010 18:46:28 -0700
> Subject: Cyborgs are us
> From: dittma...@gmail.com
> To: dbs-for-d...@googlegroups.com
>
> Has anyone had minimal success and then a large boost from a change in
> settings. How many unique settings are there?
The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.
rizzoroba86
Jul 13, 2010, 12:33:26 AM7/13/10
to DBS for Depression
I had constant depression from day one, and each time I would go in
for an adjustment it would be different afterwards. Not unlike you, I
would experience all kinds of different effects including the rage,
mania, and depression you mentioned. I would also experience
increased problems with pain, irritability and a steady decrease in
appetite. I too finally had to turn it off after 12 months and try to
regroup with just my meds. I believe I was stimulated right from the
beginning as the changes after each visit were palpable.
I think you are correct that each lead has four contacts and that the
settings range in value from 4 to at least 10, and possibly 12. Also,
I've read that the polarity of each contact can be changed, although I
don't really understand what that means from a practical standpoint.
They have told me about the 4 year study but it seems to be merely a
follow-up study for those who have 'stabilized' on the device -
something I didn't really ever achieve. I did get benefits at times,
especially immediately after a setting adjustment sometimes. The good
effects were almost always transient, and over time anxiety,
irritability, and pain would develop. I sometimes wonder if a very
low setting might not be better, such as less than 1.0. What about
trying something like 0.25 or 0.50 for a long sustained time? Maybe
if one was to adjust the stimulation below a level that produced any
perceivable side effects and then waiting it out might have
benefits?
On May 16, 6:06 pm, Rich Hayward <rhaywar...@hotmail.com> wrote:
> Eric,
>
> When I woke up from the surgery I was depression free. I'm told this happens with some Parkinson's patients who get implants. This lasted for the most part for the first 6 months (I believe my device was off). After 6 months every time they reporgrammed the device I experienced a different extreme. One month it was rage, then mania, then depression and I finally started cutting on myself for the first time in my life. They tried numerous med's to control these problems, but I ultimately had to turn the device off to make any difference. After the 12th month you can sign on for another 4 years, but they only see you every 6 months. Some I've heard are able to go in every 3 months for reporgramming, but I was told that by month 12 we should all be happy little lab rats and any further reprogrammings are just tweaks.
>
> I believe each wire has 4 leads and the strength of the signal ranges from 4 to maybe 8 or 10. I'm not sure if they program it based soley on the MADRAS tests or if ANS has some protocol where each person gets predetermined changes, but I think it is the latter.
>
> Rich Hayward
>
> > Date: Sat, 15 May 2010 18:46:28 -0700
> > Subject: Cyborgs are us
> > From: dittmar.e...@gmail.com
> The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail.http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar&oci...
for an adjustment it would be different afterwards. Not unlike you, I
would experience all kinds of different effects including the rage,
mania, and depression you mentioned. I would also experience
increased problems with pain, irritability and a steady decrease in
appetite. I too finally had to turn it off after 12 months and try to
regroup with just my meds. I believe I was stimulated right from the
beginning as the changes after each visit were palpable.
I think you are correct that each lead has four contacts and that the
settings range in value from 4 to at least 10, and possibly 12. Also,
I've read that the polarity of each contact can be changed, although I
don't really understand what that means from a practical standpoint.
They have told me about the 4 year study but it seems to be merely a
follow-up study for those who have 'stabilized' on the device -
something I didn't really ever achieve. I did get benefits at times,
especially immediately after a setting adjustment sometimes. The good
effects were almost always transient, and over time anxiety,
irritability, and pain would develop. I sometimes wonder if a very
low setting might not be better, such as less than 1.0. What about
trying something like 0.25 or 0.50 for a long sustained time? Maybe
if one was to adjust the stimulation below a level that produced any
perceivable side effects and then waiting it out might have
benefits?
On May 16, 6:06 pm, Rich Hayward <rhaywar...@hotmail.com> wrote:
> Eric,
>
> When I woke up from the surgery I was depression free. I'm told this happens with some Parkinson's patients who get implants. This lasted for the most part for the first 6 months (I believe my device was off). After 6 months every time they reporgrammed the device I experienced a different extreme. One month it was rage, then mania, then depression and I finally started cutting on myself for the first time in my life. They tried numerous med's to control these problems, but I ultimately had to turn the device off to make any difference. After the 12th month you can sign on for another 4 years, but they only see you every 6 months. Some I've heard are able to go in every 3 months for reporgramming, but I was told that by month 12 we should all be happy little lab rats and any further reprogrammings are just tweaks.
>
> I believe each wire has 4 leads and the strength of the signal ranges from 4 to maybe 8 or 10. I'm not sure if they program it based soley on the MADRAS tests or if ANS has some protocol where each person gets predetermined changes, but I think it is the latter.
>
> Rich Hayward
>
> > Date: Sat, 15 May 2010 18:46:28 -0700
> > Subject: Cyborgs are us
> > To: dbs-for-d...@googlegroups.com
>
> > Has anyone had minimal success and then a large boost from a change in
> > settings. How many unique settings are there?
>
> _________________________________________________________________
>
> > Has anyone had minimal success and then a large boost from a change in
> > settings. How many unique settings are there?
>
> The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail.http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar&oci...
Rich Hayward
Jul 15, 2010, 7:48:51 AM7/15/10
to dbs-for-d...@googlegroups.com
Sorry for not posting this earlier, I've had some medical issues, but your theory may be correct. I was in less than a month ago for my 2 year visit. I, as usual, scored poorly on the MADRAS and they suggested a setting of 6, which I immediately refused (the thing was still off at that point). I wanted it set to 2 milliamps and then halved, one milliamp to each lead. So far, so good. Not having much experience feeling this good, I'm not sure if I'm depression free or emotion free, but it is working now and I really don't care what mental title they ascribe to it, I just know that the overwhelming intensity of my symptoms are no more. The effect was almost immediate and has not changed at all. Considering my medical issues, the usual triggers and the high's and low's that come with just living, my basic response to everything now is "fine, whatever, let's move on". My therapist thinks I may still be mildly depressed, but I'm not sure given the effects of my current medical condition. Even if I am, this is a walk in the park compared to the past 30 years of my life.
I have for some time firmly believed that for me the device was acting more like a magnifying glass than something that is supposed to suppress the activity in BA25. I was told prior to the programming that the study folks consider such a low setting, based on their research, as "useless". I am happy to disappoint. I've had 14 appointments since my surgery, but have lived with this device for 762 days. I think we as the patients have an insight into this thing that the researchers can only dream of, so my advice is if you feel that a particular setting might help then make them program it to that setting.
Good luck,
Rich
> Date: Mon, 12 Jul 2010 21:33:26 -0700
> Subject: Re: Cyborgs are us
> From: rizzo...@gmail.com
> To: dbs-for-d...@googlegroups.com
I have for some time firmly believed that for me the device was acting more like a magnifying glass than something that is supposed to suppress the activity in BA25. I was told prior to the programming that the study folks consider such a low setting, based on their research, as "useless". I am happy to disappoint. I've had 14 appointments since my surgery, but have lived with this device for 762 days. I think we as the patients have an insight into this thing that the researchers can only dream of, so my advice is if you feel that a particular setting might help then make them program it to that setting.
Good luck,
Rich
> Date: Mon, 12 Jul 2010 21:33:26 -0700
> Subject: Re: Cyborgs are us
> From: rizzo...@gmail.com
> To: dbs-for-d...@googlegroups.com
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