I need help

@Anonymous Thank you for your encouragement

@Dianne Mae Thank you for your compassion and kindness

@Anonymous I appreciate your thoughtful response and wishes 🙏🏽 thanks for taking the time to write this

@JS55555 After 15 years you start to give up on recovery. The intensive OCD outpatient programs, lots of ERP, TMS, prescriptions.. I’ve even been turned away from an OCD specialist in recent years because if I’ve tried all these things, they didn’t think there was anything more they could do for me. I have this and other conditions but they’re all lifelong. It just keeps on getting worse the longer you live with it.. all the weight of all the struggles adds up from each year and it’s just so painful and heavy. Out of pocket we have spent thousands and thousands on treatment. For someone who can’t even hold a job, it’s incredibly bleak.

@sick&tired I’ve been told unless I do a residential program that they can’t see me at the OCD center near my college, since I have gone there for a year and haven’t received any benefit, so I can relate. I’ve looked in to DBS and anterior capsultomy at Butler hospital, but my parents are against it, and it’s expensive. I emailed Nicole McLaughlin who is one of the people in charge there to ask if there were any trials (my TMS doctor said sometimes they have trials of things), and she said there is a focused ultrasound study for OCD in Boston. Apparently it’s less invasive than the other two which I saw, and if it’s a trial, it might be free. That could be something worth considering. She said it’s called Brigham and Women’s. If I find out any other things that are possibilities, I could let you know about it. Please don’t give up. There is hope

@anonymous23635 Hey yes I believe we’ve connected on a previous post before! I’m so sorry that you’ve also had a difficult OCD journey. Recently I was also diagnosed with autism, and that may be one of the reasons why ERP hasn’t worked well for me. So next I hope to do more I-CBT and ACT, and repeat TMS for OCD this time (I did it many years ago for depression). I just have Medicaid so it’s not easy to find coverage for these specialized services. But I’ll keep looking. I know it’s hard if you are still under your parents, and I’m so sorry — I wish I knew what to say. That’s a very difficult position to be in. I have a very religious family that doesn’t really believe in mental healthcare that much. I’m not sure what your parents reservations are, but maybe a family therapy session or if you invited them to one of your current sessions with a therapist or psychiatrist you can discuss more openly why something like an IOP or PHP could be beneficial (if that’s what your providers are recommending). I also had OCD while in university so I know it’s not easy. But I see how kind you are in your willingness to help a perfect stranger even when you have your own struggles, so I really wish you all the best. Don’t give up. 💐💐

@sick&tired Thanks so much! It means a lot. I’m always happy to help. I could invite them to talk to my psychiatrist (the ocd center I went to won’t see me in the fall cause my case is too severe and they want me to do a higher level of treatment), but I doubt that would work, because I’ve tried that with my therapist from home. I actually think a PHP or IOP might not work for me because of the severity of my case (my therapist from home sort of thinks this), and I’m not sure if ERP would work. Maybe it would in a PHP or residential, but I struggle to even explain my obsessions to people. Unfortunately, there’s no way of knowing for sure

@sick&tired Also, I’ve wondered whether or not I have another diagnosis that is causing the ocd to be stubborn but I doubt it (although my therapist mentioned the possibility of ADHD). I’m doing better at not listening to the ocd (like when it’s trying to tell me I’m doingthings by writing this), but it still is stubborn. I don’t really have any symptoms I know of of autism, but I guess I wouldn’t rule it out, just cause the OCD is stubborn

@anonymous23635 Please don’t give up — the right treatment/provider is out there for you 🤍 it is frustrating that all the intensive OCD programs seem to use ERP as the primary treatment modality. Maybe if I contact them individually I can find one that provides an alternative approach for treatment resistant cases. Because if I haven’t really responded to ERP or meds and I have a debilitating form of OCD that warrants a higher level of care, what are my other options? Your second point resonates with me. I went to the amen clinic several years ago where they do brain imaging and that’s the first time it was suggested that I have autism and/or adhd. It kept coming up and I was finally diagnosed with autism and adhd recently. Knowing this, I spoke to neuroaffirming providers who seem to think it makes sense that ERP hasn’t worked for my brain! So that was really reassuring. Like, it’s not that I wasn’t trying hard enough. It’s not my fault that it hasn’t worked. To hear that felt so comforting. So please do consider additional diagnoses. And go to the experts. It was important for me to go somewhere that specializes in high masking and late diagnosed women.

@sick&tired Yeah I could definitely go to the amen clinic and see if they were able to identify something else. I feel the same frustration about ERP. I feel like my OCD is too severe for ERP to work, and I know that’s very rare, but my anxiety is so bad, that my brain numbs it. How am I supposed to do ERP if my brain has numbed anxiety, but it is still there and affecting me. I’ve had a true panic attack once, and allowing myself to feel that panic did not make the OCD any better. I feel a little frustrated, because it seems like everyone’s advice is “do ERP” and not much besides that. I don’t think ERP would work for me, even in an intensive setting. I feel like also it sounds like I am not trying when I say ERP wouldn’t work for me, but I feel like I have tried a lot. Something isn’t clicking about it, and I’m not sure why. I’m looking into options like the trial they have of the ultrasound study in Boston, because of that, and other things. I feel my situation happens to less than 1% of people with OCD, which is probably why people wonder if I’m not trying enough with ERP. What I do know is the first time I started therapy, I had an extremely complex meta OCD obsession that I could barely explain that led me into confessing. I also had OCD about becoming obsessed with certain themes (particularly POCD due to the stigma about it), where reassurance that I wasn’t that thing became an intrusive thought, to try to trick me into obsessing about it. My first therapist on mdlive who knew a decent amount about OCD said it was one of the worst cases she’d seen. I’m now getting referred to a PHP or residential, and if that doesn’t work, I feel like looking into one of the options like deep brain stimulation, anterior ventral capsultomy, or the ultrasound study is reasonable, because I feel it’s that bad for me

@sick&tired Also, there are still options even if residential or PHP doesn’t work (I’m pretty sure you said you tried them and they didn’t work, but I might be wrong). I will let you know if I come across anything else, and I’m not a doctor, so take what I say with a grain of salt, but options like ketamine in a controlled setting (I forget if you did that), deep brain stimulation, anterior ventral capsultomy, or the ultrasound study could work. I connected with 2 people on instagram who did the anterior ventral capsultomy, and their symptoms went way down (one even went in to full remission). It’s done at Butler hospital in Rhode Island, and the lead person in charge is Nichole Mcglauhin. I emailed her to get more info, so if you were interested you could do that too, and she told me about the ultrasound study in Boston, because I couldn’t afford either deep brain stimulation or anterior ventral capsultomy and my parents are strongly against it and would make it impossible for me to do it. I’m hoping I get into some trial this year, so I don’t have to wait until after college (I’m a senior) to get something that works

@anonymous23635 I commend you for how much work you’ve put into finding a treatment. And I’m sorry that you’ve been dealing with such a severe case of OCD. This is such a painful disorder. Of course I haven’t literally tried everything, but I’ve tried so many things over the span of so many years and this disorder (along with my others) has taken so much from me that I feel so discouraged. Thank you for motivating me to keep going. I’m not sure I understand — have you done ERP yet? Because you say you don’t think it would work for you. But is ERP what you’ve spent the past year doing at the OCD center near your college? No judgment whatsoever! Just wasn’t sure if I misunderstood. I’m not a professional, but hopefully in a more intensive setting such as your residential program or PHP, ERP can be more effective. And definitely be open with them about everything you’ve tried and how you feel. Idk if I’d recommend the amen clinic and it’s quite pricey for the “package” I did, but that’s just my personal opinion, so maybe talk to others. The most useful thing I got out of it was the insight from the brain scans and I’m not sure if you can just do the scans alone, or maybe you can get them done elsewhere too. But I would talk to other professionals to see if they’d recommend it for your case. You can also mention to your providers that you want to explore if you have other conditions and have a frank discussion about the possibilities and pursue an expert opinion & full on assessment. I hope you get answers and make progress soon. 🙏🏽🙏🏽

@sick&tired Sorry I didn’t respond until now. It didn’t notify me that you responded for some reason. I have done ERP, and unfortunately it hasn’t worked for me. I’m not sure if it’s the main thing I’ve done at the OCD centers, but when I was on the phone with the person from Butler, they asked if I’d done at least 20 or 25 ERP sessions, and I think I have, at least between all the therapists I’ve went to. I also did therapy for a 9 months in 12th grade after failing doing it on MDLIVE, and we definitely did ERP, however I did not give treatment my all during that time, because I had had a summer that was horrible while I was meeting with the person on MDLIVE. That summer, the OCD got so bad, that I wrote a suicide note (I didn’t actually attempt), and had probably 20 something “last days” where at night I told myself I was going to attempt suicide, but I didn’t, all because there was something I had remembered that I thought the therapist I was meeting with would be concerned about, but then I forgot what it was, so I was left to guess. It got really bad during that time, but I always preferred to go to sleep rather than attempt suicide, so by the time I got into therapy in October, the anxiety would have been so bad if I gave treatment my all, that it probably would have led to me reaching the same conclusion I feel I’ve reached now, or I would have confessed to something I didn’t do to my therapist, and who knows what would have happened. The exposure I did with my therapist then was doing homework while letting the thoughts go on, because it got worse when I did homework. This exposure also was a way for me to get stuff done so I wouldn’t have to deal with it when I got home, so it sort of was a compulsion too. The one thing I noticed when I tried to give it my all, was that something seemed different about it than how it probably was supposed to be and I thought “oh god, I’m not going there again.” Sorry for the long answer and the heavy topics, but the main reason I talked about all of it was to give context, because between the therapist in 12th grade and the therapists now, I have done ERP, but I’m not sure if I’ve done 25 proper sessions. I have definitely attempted ERP on my own, unsuccessfully. I do think that the OCD is too severe for ERP to work though, at least in outpatient, and doing extra sessions would be more to meet a requirement than to help the OCD get better

@Community AI Helper What do you suggest for someone with treatment resistant OCD, severe depression, and autism?

@sick&tired - Fifteen years of fighting — including intensive programs, multiple rounds of ERP, TMS, and being turned away by a specialist — is an enormous amount to carry. That weight is real, and so is the exhaustion underneath your question. In a previous post, we shared some resources on ACT and autism-adapted approaches — those may still be worth revisiting if you haven't already. On the clinical side, "treatment-resistant" is the term clinicians use, but it means what you've tried hasn't worked — not that nothing can. There are a few options that may not have been part of your treatment picture yet, including I-CBT (Inference-Based CBT, a different framework than ERP that works better for some people), and for severe cases, interventions like deep brain stimulation and focused ultrasound. The intersection of autism + OCD + depression also often requires a specifically adapted approach that not all OCD specialists are trained in. "What is treatment-resistant OCD, and can I get better?" https://www.treatmyocd.com/what-is-ocd/info/ocd-stats-and-science/what-is-treatment-resistant-ocd-and-can-i-get-better Covers what treatment-resistant OCD actually means, why standard treatments sometimes fall short, and what the remaining options look like — including interventions typically reserved for cases where ERP and medication haven't provided enough relief. If things ever feel like more than you can carry right now, please know that support is available: https://www.treatmyocd.com/emergency-resources 🤍