My Proof: http://imgur.com/a/tvjjq
My Proof: http://imgur.com/a/tvjjq
Comments: 183 • Responses: 72 • Date: 2014-01-23 05:29:00 UTCsource
moose09820 karma2014-01-23 05:38:09 UTC
This might be kind of a touchy subject (but again this an AMA), what types of intrusive thoughts do you get?
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Mechalizard47 karma2014-01-23 05:41:10 UTC
No problem, I know what I signed up for. My intrusive thoughts are mainly sexually based. I'll fear that I'm a pedophile or that I'll touch a woman inappropriately. I'll fear being around children or women. Amongst other things, this has also ruined my career because I have work obsessions. I even have obsessions ABOUT my obsessions
Edit: really, no follow up stuff about being a pedophile? I was scared to admit it.
Moxxyandspunk7 karma2014-01-23 16:58:50 UTC
Kudos to you for getting help! To go through surgery to get a deep brain stimulator you must have been experiencing some pretty serious thoughts about women and children. Do you ever act on these thoughts and thus, you were forced to do this surgery?
Mechalizard14 karma2014-01-23 18:33:44 UTC
Never, these thoughts are just that. They make me almost physically sick to have, so acting on them was never an option.
Surgery was completely elective.
hive_worker8 karma2014-01-23 18:57:25 UTC
I wonder how well someone that doesn't have OCD can understand this. I bet not very well at all.
Mechalizard8 karma2014-01-23 19:08:00 UTC
Hopefully they'll ask more questions then ;)
JustAdolf-LikeCher4 karma2014-01-23 22:41:52 UTC
Just to see if I understand, do you fear that you could be a pedophile, or are you a pedophile that was scared that you one day would act on it? Also, great on you for getting help.
Mechalizard4 karma2014-01-24 03:20:04 UTC
All if the above
[deleted]1 karma2014-01-23 18:10:42 UTC
Mechalizard2 karma2014-01-23 18:20:40 UTC
It was about 5 years before I decided to go with DBS. I can't stress enough how much this was my last resort though.
13thmurder-2 karma2014-01-24 03:56:26 UTC
There's nothing wrong with being a pedophile. There is something wrong with molesting children. Your thoughts never hurt anyone. Your actions could have, if you'd acted on them, but you chose not to. That's kind of the point. You chose.
Mechalizard7 karma2014-01-24 04:06:39 UTC
Well, I still disagree with the idea that being a pedophile is alright. I never enjoyed my thoughts. Pedos do. I think that there IS something wrong with that!
13thmurder4 karma2014-01-24 04:20:31 UTC
True, but the point i was making is that actions, not thoughts, are what matter in the end.
Mechalizard3 karma2014-01-24 19:03:32 UTC
AlreadyLookedThere15 karma2014-01-23 05:31:06 UTC
Exactly how does this DBS help you in your everyday life? And what is the mental illness that requires you have this?
Mechalizard23 karma2014-01-23 05:33:35 UTC
It reduces the amount of intrusive thoughts that I have. It also makes my anxiety lower and my mood better.
It is for OCD.
AlreadyLookedThere7 karma2014-01-23 05:35:42 UTC
So, would this work for someone with normal anxiety?
Mechalizard13 karma2014-01-23 05:38:12 UTC
I would say yes, although it is quite a process to go through.
AlreadyLookedThere7 karma2014-01-23 05:40:37 UTC
Some people get a lot of anxiety. :/ Would you say you function normally? Do these corrections to the illness make you stand out in society, or would I not be able to tell? Sorry if this is kind of offensive.
Mechalizard18 karma2014-01-23 05:43:12 UTC
No offense at all. I blend into normal society. My type are always lurking in the shadows, waiting for our time to rise.
AlreadyLookedThere7 karma2014-01-23 05:47:28 UTC
So we should be worried about people with Deep Brain Stimulators? Am I sensing an uprising?
Mechalizard32 karma2014-01-23 05:49:11 UTC
I technically am a cyborg
So yes ;)
AlreadyLookedThere5 karma2014-01-23 05:54:00 UTC
I kinda want this to be a movie now.
Mechalizard36 karma2014-01-23 05:57:12 UTC
Movie voice: first he was scared of grabbing your children, now you should be scared of him grabbing your beating heart out of your chest.
imadathrowaway11 karma2014-01-23 05:48:38 UTC
I read that your intrusive thoughts are mostly sexual. I fear I might have something similar, sometimes when I talk to people it could male/female I get strange sexual thoughts about them, I am disgusted by them, and I just try to repress them. These thoughts do not in anyway excite, in fact they mostly make me feel upset and curious as to why I have them. I have never been diagnoses with a mental illness but I do have a tough time paying attention and staying on task mostly while doing school work. I am far to embarrassed to get help and ask somebody about this. As someone who has gone through this what do you think my best course of action should be? This "condition" is very disturbing and embarrassing. I just need some guidance.
Mechalizard17 karma2014-01-23 05:52:32 UTC
The hardest day of my life was when I told someone about these thoughts. I was having delusions that the police were going to kick down my door, or that police helicopters were after me. So I thought by admitting to them, I was admitting to guilt.
Being open about these thoughts has lede to recovery, so I say tell someone in your family first. Then a therapist or psychiatrist. Then add from there.
imadathrowaway8 karma2014-01-23 05:56:21 UTC
Do you think it could be OCD, I know your not a doctor but... I just checked some of the symptoms and I have a couple, I often can't fall asleep (and have developed insomnia) because A. My brain won't shut down B. I often have repeating images in my head (not disturbing ones) just images or things that I had seen during the day, it could even be songs, they just repeat in my head the entire night and I can't force them out.
Mechalizard8 karma2014-01-23 06:01:18 UTC
It's always tough to say. EVERYBODY has bad thoughts from time to time. Where it gets to be a proble is if the are really affecting your life. Are you avoiding anything because of them? Are you afraid you did something you didnt? Are you afraid you will do something but you won't be able to stop yourself? If so I'd say it sounds likely. But seeing a professional is the best thing you can do. There are ways to treat this, but doing alone isn't one of them.
coinbank6 karma2014-01-23 18:39:03 UTC
Hi I just wanted to say these are symptoms of anxiety disorders. I was diagnosed 6 years ago with one. I remember before I got help and learned about the symptoms it was really hard for me. A lot of the time I felt like I wasn't in control of my thoughts and that led to a lot of compulsive behavior. Its difficult sometimes taking the steps to see a professional and for me I had trouble thinking I was "weak" because I couldn't help myself. But this is about quality of life and if the things you are experiencing are having an impact on your overall well being, seeking professional advice is the best thing to do.
Also please don't be embarrassed or ashamed to discuss the things you are feeling or experiencing with a qualified doctor. The things you could tell them are not going to phase them at all. Just imagine them as someone who browses r/wtf all day everyday.
Mechalizard5 karma2014-01-23 19:20:46 UTC
This is so true. Doctors haven't been shocked by any of the sick shit I've come up with. So don't be scared!
sneakypedia6 karma2014-01-23 15:27:01 UTC
you can work your way up to the entire internet in small steps like this :D
Good on you. Openness lets the light in, chase the dark away. Happy to see someone living with themselves openly
Mechalizard2 karma2014-01-23 15:53:28 UTC
spectraglyph00-1 karma2014-01-23 12:14:05 UTC
They're just thoughts. Everyone thinks fucked up things. As long as you don't act on them, you'll be fine.
Mechalizard7 karma2014-01-23 19:23:40 UTC
This is getting down voted, but it is kinda true. That is the cognitive piece (that takes a ton of practice and guidance to do), but medications also play half the role.
Simply saying "don't think about polar bears" makes you think about nothing but polar bears. OCD is the same way, you can't just will it away, believe me!
spectraglyph00-2 karma2014-01-24 00:15:04 UTC
I understand that, but everyone has weird thoughts; it's nothing to get worried over. If you think what it would be like to have sex with certain people, there's nothing wrong with it, even if you do it all the time.
Mechalizard8 karma2014-01-24 02:47:34 UTC
Well I believe you are misconceiving what the thoughts do to you. You are viewing it from the perspective of someone without an issue. If you were plagued with horrible thoughts of something you find disgusting every time you, say, went to a playground. You'd probably stop going to that playground. Then you stop going to all the playgrounds, then you stop playing with kids that aren't yours. Then you stop playing with yours. Them you can't stand to see yours. It goes on and on like that.
nymster11 karma2014-01-23 06:31:08 UTC
I won't ask if it works, my thought is ..does it work well? do you feel like it helps you in ways other things don't?
I ask this as a person dealing with chronic depression and social anxiety disorder and after many years of therapy, diet changes, 'going out for a walk' and medication..the only 'solution' my doctors thinks will help me is to up my Zoloft dosage.
Does this DBS make you feel less imprisoned inside yourself like when you take medication? do you feel more free or do you feel as if its just a temporary solution to keep you from offing yourself by numbing you to the problem at hand?
Sorry if this is an insensitive question, I'm just..taking a chance in thinking you went through more treatments before coming to this one!
Mechalizard9 karma2014-01-23 06:37:14 UTC
So medications actually worked really well for me. I got great benefits from them, it's just that the side effects were too crushing that I had to stop. The DBS makes me feel just like the medication (but better) without the side effects.
Best of luck with your issues. I'm a believer that medication works great, but if it is anxiety, I'd also suggest working with a good cognitive therapist that pushes you to do stuff you don't want to.
oldnpervy10 karma2014-01-23 05:38:47 UTC
Mechalizard14 karma2014-01-23 05:46:16 UTC
I was in and out of the hospital in one day, but I had one year waiting period before the surgery since it had to be approved by so many people.
runpmc8 karma2014-01-23 15:53:57 UTC
My partner's just starting the first round of MRI to determine if he's a DBS candidate. It's gonna be a grueling year.
Mechalizard9 karma2014-01-23 16:12:56 UTC
Seriously. I want to send you an e-hug. Waiting is the hardest part. Hang in there, it gets better. And the surgery isn't TOO serious.
catherinocalypse7 karma2014-01-23 05:40:27 UTC
What was your life like before the implant? Is there anything specific that you can do now and discovered you really enjoy that you thought was never an option for you before?
Mechalizard23 karma2014-01-23 05:47:08 UTC
I had a really hard time being with my son sometimes. I can now be a normal father for the first time in his life!
catherinocalypse8 karma2014-01-23 06:14:38 UTC
That's excellent! I'm really glad that this sort of treatment has been available to you and your family =]
Mechalizard9 karma2014-01-23 06:18:13 UTC
Blerg, you have no idea how glad I am that this exists. I tried EVERY SSRI, and the hall had horrible side effects. I was out of options.
This surgery is part of a study aimed at getting broader FDA approval so people in the future that are like me won't have to wait a year and jump through so many hoops. So hopefully my participation helps.
chrisfs7 karma2014-01-23 07:33:31 UTC
Great AMA, you're brave and helpful for talking about.
You mentioned batteries. How often will you need to go back to get them replaced ? Do you have a remote control of some kind to adjust it ? Are you supposed to avoid area, say with microwave oven or cell phone jammers or stuff ? When you first got it and turned it on, was there an immediate change or a gradual one ?
Mechalizard10 karma2014-01-23 07:47:52 UTC
Thanks for the kind words.
Since this is a study I was "blinded" for an unknown time so they could get unbiased info on the efficacy of the device (e.g. Placebo effect). Because of this they had to implant a regular battery that had to be changed every 6-8 months. They didn't want to give me the rechargeable since I would be able to see if it was using power or not. So I have to have that taken out in the next few months. They'll then put in a rechargeable that will last about 6 years.
They gave me a controller that I hold against my chest that can turn the device off, or switch between a few pre-established settings.
I have to avoid MRI, and ultrasound since they'd kill me. Also have to avoid metal detectors and things since it would turn the device off (which I would be able to turn back on again with the controller.).
Again, since this was a study I didn't know if it was on the whole time or if they would turn it on during one of my other appointments. After 3 months I felt it for the first time. I smiled for no reason. That might not sound like a big deal, but I was incredibly depressed, and I was smiling like I just heard a joke. A minute later thry tried another setting... I felt like I was on a rollercoaster. Like totally dizzy. That didn't scare me, it THRILLED me, because I KNEW it was on!
ThatsNotGucci2 karma2014-01-23 19:34:00 UTC
So you'll need your head cut open again soon? That sucks, how bad seas the surgery?
Mechalizard2 karma2014-01-23 19:35:36 UTC
So they won't have to go back into the head unless there is a problem with the electrodes drifting. The battery is in my chest, so that is where they replace it.
Evan_Th1 karma2014-01-24 06:51:22 UTC
Not sure whether you'll see this still, but what are the different settings for the device, and why would you switch it between them?
Also, why would it be dangerous to go through a metal detector if it'd just turn the device off, and you could turn it back on again? Was there a risk of something more?
Mechalizard1 karma2014-01-24 19:02:40 UTC
So there are thousands of potential settings for the device. Some make me exhausted, some make me sad, some anxious or manic. So working with a good programmer had been key. It's my feedback and his knowledge that help us dial it in.
Only risk in metal detectors is turning it off.
Schwabahbob6 karma2014-01-23 06:00:09 UTC
Can you dream?
Mechalizard15 karma2014-01-23 06:02:50 UTC
I love this question. Yep, I still dream...of you...dunDunDUM
Schwabahbob7 karma2014-01-23 06:04:18 UTC
You weren't supposed to remember me! the surgery didn't work..
Mechalizard13 karma2014-01-23 06:06:08 UTC
I figured it out. I saw Oblivion.
EyeHamKnotYew6 karma2014-01-23 05:31:19 UTC
Brief details explaining why please.
Mechalizard14 karma2014-01-23 05:32:39 UTC
Sure, it's because I have severe OCD. Regular SSRI medications have crazy side effects in me that causes me to not be able to sustain their usage.
_paralyzed_5 karma2014-01-23 07:15:42 UTC
Could you give us a breakdown of what it does? I loosely understand what ssri's do. Is it always doing it's thing, or does it know when to work? What does it stimulate?
How has it effected your libido?
Was there a catalyst (incident) that got you talking about your thoughts, or did you seek help all on your own?
Any sexual assault on you, or did the pedophilia develop on it's own?
Mechalizard5 karma2014-01-23 07:36:11 UTC
So it's funny, but for all the science, they don't know exactly how it works. There are 4 electrodes on each extension, they shoot an electrical current from the stimulator implanted in my chest through a wire that runs along my neck into my brain. That current runs to the electrodes that they've paired for desired effect. They don't know if it inhibits or activates that area, but I'm thinking it inhibits since that is what SSRIs do.
Libido has actually improved. There's were making it piss poor, bit now it seems normal.
The breakthrough point for me was when I was having delusions that the police were in the helicopters that I heard above my loft in downtown LA. This was during the time that the NSA thing first got leaked about 6 years ago. I thought that there were images on my computer and that I was doomed. I even destroyed my old computer because I feared there were traces of images I never downloaded. So the sanity was still there in the sense that I knew that this was nuts. I knew that I didn't look at anything, but I felt I did. I thought I was having a paranoid breakdown. I was shocked to be diagnosed with OCD.
No personal assault. My grandfather inappropriately touched my cousin while I was in elementary and we "divorced" our whole family. So I think a molester or pedophile is one of the worst things you can be and therefore that is what I fear I am.
Trelalala3 karma2014-01-23 08:33:23 UTC
After your treatment do you still feel like you are a pedophile?
Mechalizard2 karma2014-01-23 16:43:05 UTC
Sometimes, yes. I'm still getting the programming down though. After it gets set, I should have a reduction of symptoms but they'll always have some symptoms for the rest of my life.
ClayLeigh5 karma2014-01-23 07:56:49 UTC
I'd heard of vagal nerve stimulation for depression but this is other level stuff. You are a BADASS! Thank you for doing this AMA. Good luck to you, I hope you have a happy life.
Mechalizard6 karma2014-01-23 08:00:20 UTC
Thanks, this made me smile a goofy smile :D
_paralyzed_4 karma2014-01-23 07:18:24 UTC
Also- What crazy side effects did the ssri's give you? Thanks for the AMA!
Mechalizard8 karma2014-01-23 07:55:54 UTC
They all make me insanely tired. I was miraculously able to hold down a job, but I would walk through the door and fall asleep until the alarm went off for me to go back. Them in the weekends I would sleep about 40 hours to recharge for the next week. I was exhausted the whole time taking them.
It's tragic actually but I was involved in a study of my genome since I was having side effects from SSRIs. It took a year to get back, but when it did it told me what I already knew, I'm a poor metabolized of all SSRIs except ONE. One that I hadn't tried. Paxil! I would have sung the name of that drug to you I was so excited. After a week of taking it I had a constant burning in my muscles. It felt like they weren't getting enough oxygen. My doctor feared rhadomyolosis, we ran all the tests and it was clear. Since this was our only drug option, they put me back on it to see if the side effects would dissipate after a month. They didn't and we got off. That was over a year ago and I still have pain, but it has gotten worse. It makes typing this incredibly hard. I can only walk a block or two, I sometimes can't shower or get out of bed. They don't know why either. That's the worse part of it.
gutter_rat_serenade3 karma2014-01-23 09:44:20 UTC
Did your mental illness progress over time? or did it kinda all hit you at once?
When did you start realizing that you might be dealing with stuff going on in your brain that not everybody deals with?
Mechalizard3 karma2014-01-23 15:30:09 UTC
It hit me all at once! It's crazy, it just popped on in the afternoon. I know the exact day even!
It wasn't for months until I realized they were not real thoughts, because who doesn't trust their own brain, right?
I even considered castrating myself so I wouldn't do anything to a kid! That's how bad they were.
calmdownthingy3 karma2014-01-23 19:43:50 UTC
What happens when you enter the Konami cheat code?
Mechalizard1 karma2014-01-23 19:48:39 UTC
I'll get back to you on that one :)
Nirvana9853 karma2014-01-23 10:50:50 UTC
My brother has very severe OCD and despite many different medications and lots of (VERY EXPENSIVE) trips to top psychologists, he doesn't seem to be getting any better. Although you seem to have been courageous enough to take this giant step forward and accept this kind of help, I don't think this is an option my brother would take. What can I do as someone on the outside to try and help my brother move forward? Because currently he just sits on his laptop all day and despite seeming happy, I can't help but think he must be concerned for his future as I am.
I use the word courageous to describe you here and I don't use it lightly, but having suffered through severe anxiety of my own and watching my brother's OCD develop, it is really the only word that can describe overcoming the terror of being oppressed by your own mind, so I really applaud you and wish you the best.
Mechalizard4 karma2014-01-23 15:27:52 UTC
Thank you, that really makes me feel great!
It's tough, I would say the hands down most important thing I've done is work really hard with an amazing cognitive therapist.
I do a half hour to an hours worth of homework a day.
Make him get aggressive about taking a hold of this!
Sendmepicsofdicks3 karma2014-01-23 06:37:21 UTC
im so glad all my problems went away, because of ssris
but stuff like this kept me from killing my self, because i always new worse case scenario, i could get a surgery like this
also "insert planet of the apes reference"
Mechalizard2 karma2014-01-23 06:39:05 UTC
You damn dirty ape.
uebercelsus3 karma2014-01-23 07:16:28 UTC
What was the line in the sand leading to your decision to get this installed?
Mechalizard5 karma2014-01-23 08:03:28 UTC
The interference into my interactions with my son was it. I am crying as I type this but that was the biggest "fuck you" I had gotten from this disorder. It was robbing me of the wonderful innocence of my own son! That is when I was incredibly suicidal and at the end if my rope.
lolabugaboo3 karma2014-01-23 05:58:15 UTC
What does the future hold?
Mechalizard3 karma2014-01-23 06:04:45 UTC
So I have to go in for more programming of the device, and I'll always have to go in for regular checkups. I'll have to have another surgery in 4 months to swap out this battery for a rechargeable one. The. I'll have to have surgery every 4-6 years for battery replacements. I'll still continue seeing a cognitive therapist for once a week, for who knows how long. Maybe forever.
lolabugaboo4 karma2014-01-23 06:41:50 UTC
Does it all seem worth it?
Mechalizard4 karma2014-01-23 06:44:12 UTC
Definitely. It's been hard, especially for my family. But I've appreciated their strength and support throughout this process. Hopefully my wellness will be enough to thank them for their sustained support.
SPACE_JESUS13 karma2014-01-23 14:27:27 UTC
Have you flown/traveled to a different country since the surgery? If so, what kind of special documentation do you need for your DBS since you are unable to properly go through metal detectors and safety measures such as that?
Mechalizard2 karma2014-01-23 15:24:04 UTC
I have a medical ID card that is just this plastic card with my name on it. I had to go through the arms up metal detector. They didn't even want to see the card.
silentpete2103 karma2014-01-23 15:47:50 UTC
I was able to scrub into a surgery where they implanted a generator for a previously implanted DBS on a patient with Parkinson's disease. The surgeon dug out a pocket under the skin in the chest where they put the generator which was about the size of a small pager and then they threaded a wire under the skin connecting the probe to the generator. Assuming you have something similar, what is it like having all that stuff sitting under your skin? Do you notice it? I feel like if it was me I would be constantly fiddling with it.
Mechalizard2 karma2014-01-23 15:57:05 UTC
I do have the same thing. I notice the wire in my neck like once a day. I then like to trace the cord from my cheat, up my neck, to the head.
LiveLongBasher3 karma2014-01-23 09:39:54 UTC
Tongue in cheek question - but did it worry you that the medical team seemed to be concerned they might forget their left and right?
Mechalizard2 karma2014-01-23 16:40:01 UTC
Not really, it was A WTF moment though because they just seemed so casual about it.
palmtree233 karma2014-01-23 20:22:17 UTC
I just want to say kudos to you. A few years back, I worked as a research assistant on a study of DBS for depression. I have so much respect for you brave volunteers. After just reading that you did this as a study participant, I want to give you a high five. I hope it continues to help you!
Mechalizard2 karma2014-01-23 20:39:25 UTC
Thanks! This means a lot!!
whatjazminsays3 karma2014-01-23 17:54:19 UTC
this has been one of the best things i've read in a while. cheers to you man.
Mechalizard3 karma2014-01-23 18:35:25 UTC
Thanks, I'm always happy to help future OCD sufferers. So hopefully this study will contribute. I'm also involved in several other studies as well. :)
redspart2 karma2014-01-23 14:22:29 UTC
I will try. When you had the surgery where you awake? I know sometimes when they preform things like this, you are sedated but awake.
Mechalizard3 karma2014-01-23 15:25:00 UTC
Good question. I was awake when they drilled through my skull!!! Then they put me to sleep, bit woke me later to test the device.
redspart2 karma2014-01-23 15:26:09 UTC
Thanks for the reply! Wow that would be creepy I think....Do you remember it?
Mechalizard2 karma2014-01-23 15:53:11 UTC
Love_Battery2 karma2014-01-24 03:37:30 UTC
Thanks for this AMA. What were the first things you began noticing after the DBS implant?
Mechalizard2 karma2014-01-24 03:42:36 UTC
It was three months until they turned it on. I smiled at first. Just for no reason, like someone told a funny joke.
maximuszen2 karma2014-01-23 16:05:47 UTC
What institution did you have it done and who was the surgeon?
Mechalizard3 karma2014-01-23 16:14:36 UTC
Haha, whhhy? I'm trying not to disclose too much info about myself. It was through Kaiser, but the study is by Brown.
blazeking4202 karma2014-01-24 02:44:47 UTC
Do you have any mental strategities to control OCD without treatment? my friends mom definietly suffers from it and is deteriorating(constant laundry, constant cleaning nothing, talking to herself while smoking endless amount of ciggs) Second question is how much did the procedure cost?
Mechalizard2 karma2014-01-24 02:51:19 UTC
Yes, the best thing your friend can do without treatment is to sit through the things hat make her uncomfortable without doing anything to alleviate that stress/fear. So if she touched a door knob and feels the need to wash her hands because she will get a virus and die. She should sit with that fear until it subsides. Then each time it gets less anxiety provoking.
blazeking4202 karma2014-01-24 03:10:26 UTC
I agree it definietly would help and I will mention that. Unfortunatly her mom is still at the point where she doesn't think she has a problem.
Mechalizard2 karma2014-01-24 03:16:15 UTC
That's too bad, without her support it will be hard to get over it.
blazeking4201 karma2014-01-24 03:26:11 UTC
Yes but that is definietly a really good method you described to do subconsciously somehow by possibly telling her not to do x, or to stay in the room and sit here and talk while she's feeling uncomfortable. thank you
Mechalizard2 karma2014-01-24 03:30:07 UTC
Yep, it is called exposure response prevention. It is best if under the guidance of a skilled cognitive therapist, but if she can't because of her mom, it makes sense going it alone.
blazeking4201 karma2014-01-24 03:46:56 UTC
Well its her mom who has the problem. probably from being very stir crazy from not having a job for years and collecting unemployment. I am close with her so I am sometimes there and have seen it first hand enough that i've been embaressed by how her mom acts in public when she gets out etc.
Mechalizard1 karma2014-01-24 04:07:07 UTC
She could have gotten it from her mother.
thedaysrunaway2 karma2014-01-23 17:38:24 UTC
Excuse my naivety but is this on a par with ECT in terms of what it does? If so, are there chances it could impact negatively on other brain areas?
How permanent is it? I mean, can it be removed if you don't get on with it? It can't have been cheap, so I'm guessing it's not that simple.
As you're part of a study, how is the effectiveness of the DBS being measured? Obviously thoughts and emotions are all very subjective, so is there anything tangible that can be recorded?
What might the negative points be? The 'pros' must have outweighed the 'cons' for you to go ahead with it, of course, but does it have any negative aspects?
Does it preclude you from any activities, such as driving or certain jobs? That would be a deciding factor for me, I think.
I find this fascinating, and it's something I've never heard of. I presume you're in the US? I'm in the UK, so it's doubtful the NHS would fund things. Trying to avoid anecdotes here, but I've very long-term mental ill heath. Tried most therapies as well as SSRIs, SNRIs, and antipsychotics but plateaued long ago and marked down as 'treatment resistant'. Given the option of ECT which frankly scared me, even after thorough research. The biggest issue for me is 'will I work again?' and the outlook for the last few years has been grim on that front. It would be interesting to know if the DBS is something that could help facilitate a return to 'normality'. At this stage of my life, and having tried most other things, I would gladly volunteer as a guinea pig.
Thank you for this ama, it's genuinely useful and interesting.
Mechalizard2 karma2014-01-23 18:32:06 UTC
Wow, there are a lot of questions in this one; let's get cracking!
It's like a localized ect I guess, although it does no damage.
The whole thing is removable, and I'll just have the scars and the memories.
As far as the study, there are several things they are looking at. First we'd the blinded "test". Every time I go in for an adjustment I do several measures such as the YBOCS to measure in the most objective way you can about emotions.
Te cons of the surgery are really the surgery itself. While it is a pretty safe operation it's still my brain! There is always risk of brain damage. Beyond that the only cons are the scars and the side effects during programming.
I shouldn't make any large jerking motions with my neck. It has the potential to cause electrode drift. So things like intense roller coasters are out.
Oh I tried SNRIs as well as tricyclics. Spin know your frustration. I am on the US, so I don't know what your approval process is like. I know that there have been global operations (don't know the countries) though. About 100 all in all.
You can get an Anterior Capsulotomy. That is basically the exact same effect as what I have, but it is permanent.
thedaysrunaway1 karma2014-01-23 18:56:16 UTC
Thank you for taking the time to reply, it is appreciated.
Had you tried ECT before the DBS? I've debated and researched ECT a lot over the years, as it was offered to me (or rather I felt 'threatened' with it, but that's a whole other story). I feel there is simply not enough 'proof' of long-term improvement from it, yet many tales of other brain areas suffering detrimental effects. All that from a practice that has been around for tens of years. Despite being relativey experimental in the mental health field, DBS seems to be considerably more researched and monitored than ECT.
You say you thought about it for five years before going ahead. Was it something you approached with your doctor or was it suggested to you?
What were the prerequisites for being accepted onto the study? Were they physical or entirely mental-health based? Had you, for example, spent several periods of time as an inpatient, or did you have to try various meds in controlled trials before you were considered?
Thank you again for doing this =]
Mechalizard1 karma2014-01-23 19:10:41 UTC
My brother has Bi-Polar disorder and has been hospitalized before. He told me about how patients seemed after ECT and they just seemed lifeless. So that pretty much scared me away from that.
Go to YouTube and watch videos of people getting their DBS devices turned on, that is what made up my mind about getting it done.
lolabugaboo2 karma2014-01-23 06:18:56 UTC
Your scars look tuff. Do chicks dig them?
Mechalizard6 karma2014-01-23 06:20:25 UTC
My wife thought I looked awesome. Other chicks don't dig me, I'm in my 30s. :P
laurenmccoy2 karma2014-01-23 21:12:58 UTC
Thanks for doing this AMA. I have a neurostimulator for chronic migraines. How is your stimulator placed exactly? Do you have to charge a battery or anything? Ultimate question is how does your stimulator function!? I really hope yours helps you as much as mine helps me! :)
Edit: the side effects of my medications are also what lead me to discover my neurostimulator
Mechalizard1 karma2014-01-23 21:40:04 UTC
Heyooooo stimulators in the hiZhouse! My battery is non rechargeable because it was part of a study. I get my rechargeable in a few months. It's placed near the thalamus, and so far it's been working great.
mariposalily2 karma2014-01-23 13:33:19 UTC
Were you awake during your surgery?
Mechalizard2 karma2014-01-23 15:25:27 UTC
During parts. I was when they drilled through my skull!
psychocrazy2 karma2014-01-24 03:16:48 UTC
Did you ever try Risperdal, Geodon, Seroquel, Zyprexa, or Abilify for your OCD?
Mechalizard1 karma2014-01-24 03:18:28 UTC
I did Risperidol (one of the drugs I'm still on), zyprexa, and abilify. I don't remember the fourth one.
Dumas762 karma2014-01-23 05:42:23 UTC
Intrusive homicidal maniac thoughts?
Mechalizard3 karma2014-01-23 05:44:11 UTC
Less on the homicidal. I do have suicidal obsessions (which are different from ruminations).
Dumas763 karma2014-01-23 05:47:44 UTC
Glad you're being helped. Best of luck to you.
Mechalizard2 karma2014-01-23 05:48:24 UTC
Thanks for the positive vibes :)
gutter_rat_serenade-1 karma2014-01-23 09:39:27 UTC
What are suicidal obsessions? You can't be that obsessed with suicide if you're still here, right?
Candymom6 karma2014-01-23 15:34:04 UTC
I can't speak for the OP, but I can tell you that frequent suicidal thoughts are rather shitty to deal with. I have what is known as "passive" suicidal thoughts. I think about it many times a month, daily if I have a lot of stress. I won't ever do it, but I frequently think I should drive into a tree, or wonder what I could take that would put me in a coma for six months, or think about myriad other ways to escape life. Again, I would never follow through, but I've been dealing with this for 30+ years and it got old a long time ago. If I could flip a switch and turn it off, I would.
Edit: I doubt that even comes close to suicidal obsessions, though.
nolaw115 karma2014-01-23 17:07:22 UTC
You pretty much summed up what its like for me on a daily basis. Ive never really been able to put into words how I feel, and it helps to know others feel the same way I do.
Mechalizard1 karma2014-01-24 03:24:51 UTC
Same here. PM whenever you want :)
Mechalizard5 karma2014-01-23 16:41:20 UTC
Good question. I would have the intense fear that I would commit suicide without wanting to. Such as I won't be able to control myself from walking into traffic, or jumping in front of a train.
gutter_rat_serenade2 karma2014-01-23 23:45:48 UTC
I get those thoughts.. like thinking about opening the door and rolling into traffic while going 60 mph down the highway... although I don't think my thoughts are as strong as yours.
Mechalizard2 karma2014-01-24 03:25:55 UTC
Ya, they aren't that unusual, everyone has bad thoughts. It's just that the OCD runs with it.
daoriginalchef2 karma2014-01-23 17:57:39 UTC
What is a deep brain stimulator?
Mechalizard2 karma2014-01-23 18:34:10 UTC
See other comments
kmwalk141 karma2014-01-23 15:58:41 UTC
I'm curious as to what the implant actually does? Where is it, what part of the brain? Why does it work? Etc. I scrolled pretty far down and haven't seen this question yet.
Also, why were you a candidate for this surgery and why are there no good pharmaceutical options?
Mechalizard1 karma2014-01-23 16:17:56 UTC
So it is in the thalamus region. They don't actually know how/why it works. My guess is that the electrical influence inhibits some aspect of the neurotransmitters.
Do my symptoms were disabling enough to warrant such a procedure. SSRIs are the main drug that treat OCD. I tried them all but they all had disabling side effects.
Oscarius31 karma2014-01-26 00:28:32 UTC
Hey, I have been having very similar problems over the last year that have come and go. When the thoughts are there I become very depressed and believe I have no future. I don't want to have children or get in a relationship because I have horrible thoughts that I could harm someone. Then for a week or so I will feel totally normal again and be driven to follow my aspirations such as music. I want to live life. I believe that this is the only one I have, I don't want to rely on drugs or treatment. So far I haven't received either and I go through these bipolaresque transitions frequently. What I really want to know, Is there any way I can live a normal happy life without getting major surgical treatment or being addicted to drugs that change my personality?
Also I started smoking weed around a year ago which sort of coincides with the problems. I only smoke about two or three times a month on average. Do you think that this could be causing or contributing to my problems.
So far talking to my mum about it has been the best therapy.
Mechalizard1 karma2014-01-26 19:38:58 UTC
So I think you have the drug aspect distorted. They don't truly alter who you are, and they're not addicting. I would say that you could do some more research in drug treatments before trying one out.
I will say that your cycles will continue and most likely get worse if you don't get help from a cognitive therapist or psychiatrist. I just want to be realistic with you.
You don't have to go to the lengths I did. In only did because drug treatment wasn't an option.
Also, weed is a psychoactive drug, so unless you are using with the knowledge of a psychiatrist, I would say it is harmful to your mental state.
theduckopera1 karma2014-01-25 09:54:25 UTC
Gosh, fascinating. I've just been diagnosed with OCD myself but mine is mostly compulsions whereas from the sounds of it yours revolves around the obsessions. Am I correct in saying that? If not, were there any compulsions that affected you as badly as the obsessions?
Just curious! Mine isn't bad enough to have to consider something like DBS (and I count myself an extremely lucky bunny for that), but I am still trying to get to grips with the nature of the illness and how it affects myself and other people. Thank you for speaking out about this!
Mechalizard1 karma2014-01-25 15:07:29 UTC
Great question. For a long time I only thought I had obsessions, not compulsions. Working with my therapist I've learned this is very far from the truth. My compulsions are avoidance, reassurance seeking, checking mentally, and repeating mentally. It is tricky to catch them!
Magmatron1 karma2014-01-23 16:16:36 UTC
What is your favorite book?
Mechalizard3 karma2014-01-23 16:20:02 UTC
Funny question! Um, deceivingly hard. I would say Plutarch's Lives.
Magmatron1 karma2014-01-23 16:25:31 UTC
Also, have you read the terminal man, by Michael crichton? It's a really good book and the first thing that came to mind when I saw the thread
Mechalizard3 karma2014-01-23 16:37:46 UTC
I will now!
lifesaver13bsa1 karma2014-01-23 15:55:27 UTC
What brain region are they stimulating? Ventral capsule, nucleus accumbens? I ask because I am part of a research team that is working to figure out the neural mechanisms of DBS. We focus on understanding why and how DBS to the subgenual cingulate works in severe, intractable depression (and also why doesn't it work in some situations)? As a cognitive neuroscientist on the team, my part of the research involves trying to understand how stimulating a particular part of the brain affects other regions of the brain. Current findings suggest that rather than just stimulating one brain region, DBS produces downstream effects in brain regions connected to the DBS region. So the issue of 'targeting' certain brain regions has to do with both what that region does and what regions that are connected to it do. It would be great to hear your thoughts on the sorts of feelings/sensations you had when you first noticed that the DBS was on and working, as well as any feelings/sensations you have as the DBS is left on chronically.
Mechalizard2 karma2014-01-23 16:00:45 UTC
For OCD it's at the thalamus. Fortunately it isn't really next to any motor functions so I don't experience side effects like Parkinson's. Such as how some patients have slurred speech after DBS.
xzt1231 karma2014-01-23 15:45:13 UTC
Did the fact that they had to label R and L on your forehead make you worry about the surgery more? ;-)
Mechalizard3 karma2014-01-23 15:54:12 UTC
Haha, ya I wasn't expecting that. They did it on my chest too. I kind of just thought it was better to be safe than sorry.
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