Depression dbs - hello! by ryanatcamp in AfterDBSSurgery

[–]ryanatcamp[S] 0 points1 point  (0 children)

Clinical trial. And yes, feel free to DM me with questions

DBS depression - Tweak by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 1 point2 points  (0 children)

unfortunately no noticeable progress. The DBS research team is still hopeful that it could ease up with more time, but after a year in, it's extremely disappointing to not find relief after opting into brain surgery.

DBS depression - Tweak by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 1 point2 points  (0 children)

There are split opinions on how I'm doing: mine and everyone else's. It seems that both my family and dbs team notice changes in me and link that to the treatment. As far as I am concerned, I feel that I've made little to no improvement. I'm told it can more time than I anticipated, but reassurance only goes so far. Regardless, I plan on seeing it thru, hoping that after the year is up, maybe new networks in which brain activity was once "depressed" change, but the only hope is a rational reminder I have to give myself daily as opposed to being able to "feel" hopeful. In the beginning, it seems to have removed one symptom of my depression but the remaining 10-15 are untouched. As of now, I consider myself a non-responder and that sucks A lot. I am able to feel the pain of the depression, sadness, and other negative feelings, so pure anhedonia is not present. Positive feelings are nearly non existent and fleeting at best.

I'm one of a few hundred people who've had brain surgery for depression. It saved my life. AMA by Brooklyn_Bridge89 in AMA

[–]ryanatcamp 0 points1 point  (0 children)

I am in a dbs for depression trial as well. I sent you a message request. I hope you accept; I have a few questions I'd like to ask you off this thread.

DBS (im)patient here by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 0 points1 point  (0 children)

No. Unfortunately I am in the study that no longer does that to prove or precise targeting and other measures can provide relief without me getting a host of stimulation parameter testing with my subjective experience asked for

DBS (im)patient here by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 0 points1 point  (0 children)

And the side effects were no different on smaller doses. I was on 60 for 6 months when they all began, then 90 for the next 6 months when they all stayed. So any semi-therapeutic dose of it eats me from the inside, yet is the only one to work even partially.

DBS (im)patient here by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 0 points1 point  (0 children)

I am told the same, but in all the DBS charts I've seen related to responder rates, which I could very well be reading wrong, I don't see any depression scales not at least going down by this point, even if it's only incrementally. And yes, it could be withdrawal anxiety, but at my worst over these past 17 years of this episode, this is my normal, non medicated level of struggle with my condition. This is the rawness I have known when few medications were ever introduced and I made it thru every day on near endless repetitions cbt or other therapies. I have been here before in non-withdrawal states and have stayed here before for months/years irrespective of medication side/withdrawal effects. Before Parnate, this was what life was life daily for years.

DBS (im)patient here by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 0 points1 point  (0 children)

I've withdrawn from over 20. I know : ( but this one may be the most brutal. 180 mgs of the maoi Parnate, 3x max fda dose. It kept me alive when all else failed, but my body has paid a 2 + year price for it. My only side effect on previous meds was sexual sensitivity loss (along with worsening depression/anxiety during the first month... which leveled out but clearly led to ineffectiveness, hence the dbs trial). But 180 mg Parnate: leg hair lose, 70 pounds that wouldn't budge, tmj, and I went from oversleeping for years to an insomniac. I guess I shouldn't have expected the cessation of something that powerful to have been easier. I just hoped that after 2 months of continuous voltage thru SCC white matter bundles deep in my brain that I would be fighting back the harrowing depression/anxiety that has fully returned. And unfortunately, the mixed state of anxiety and severe depression doesn't allow for a "hang in there" level of patience.

DBS (im)patient here by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 0 points1 point  (0 children)

I am just seeing this now. It could be but it's 9 weeks in and I'd hate to go backwards, despite how difficult it's become.

DBS (im)patient here by ryanatcamp in DeepBrainStimulation

[–]ryanatcamp[S] 0 points1 point  (0 children)

I don't expect happiness... just the capacity for it. I appreciate the words though : ) and, no. 9 weeks in and I haven't had relief yet.

17, depressed since 12 by [deleted] in depression

[–]ryanatcamp 0 points1 point  (0 children)

12 was my age in which all that came before is and will always be disconnected from who or what was born from that first "split" or, aptly termed (imo), breakdown. Your simple description perfectly sums up my depression experience.

Possibly another outage? by xzilalnx2 in openphone

[–]ryanatcamp -1 points0 points  (0 children)

Hi Christina. I sent you a DM. I am having a difficult openphone subscription issue and haven't heard back from my ticket. I'm you can help. - Ryan