I have been asking general questions about my experience with ocd and treatment on here but I haven’t received much feedback It makes me feel alone in these experiences I really just want to see if others can relate and make sense of these things. Because if they really can’t idk maybe I do have another disorder in addition to ocd? I just want to get on the right treatment path
You are definitely not alone
@ben123 Thank you, but I mean alone in the specific topics I’ve discussed. I’ve been diagnosed with OCD and I don’t dispute that I have it. I know the struggle and I’m certainly not alone in that. But I haven’t had much success with the treatment (several years), so maybe there is more to the story. I just don’t see anyone talking about the topics I’ve discussed.
I can relate to this. I read some of your posts and I can relate to them. My therapist at home (I go away for college) said that she felt I needed to get the anxiety level down for ERP, and I have struggled a lot with ERP (I could relate to one of the other posts you had about ERP). I’ve tried nearly every class of medication and therapy twice a week, and I haven’t had any benefit. Most of the professionals I’ve worked with have recommended doing a PHP or residential program like Roger’s or McLean, which my parents said I’m not doing (I’m 20, but not financially independent). I’ve also completed the depression protocol TMS with no benefit. They used the depression protocol cause my ocd was more rumination based, and they felt my ocd was too severe for the provocation in the OCD protocol. What medications have you tried? I’ve heard chlomipramine can make a big difference for a lot of people (it didn’t for me but it does for a lot of people), or memantine, which works on glutamate. My dad had a coworker whose daughter had very severe ocd and had even tried TMS with no benefit, and then she tried memantine and the OCD is manageable. Also, I can relate to no one responding to posts. Most people respond to some of what I’ve tried, so I feel not many people can relate to my situation
@anonymous23635 Hi, thank you so much for your thoughtful response! Yes, previously I’ve been told that I need to work on first bringing the anxiety down to a manageable level, but meds never did much. I felt the side effects for sure, but not really any noticeable therapeutic benefit. Uff I couldn’t tell you a list of meds, but I’ve tried various SSRIs and antipsychotics. They’ve tried to put me on so many different ones since I first started meds 9 years ago. Also I did the genetic test to help determine the best match for me. I’ve also taken the supplement NAC. I’ve done two OCD IOPs so that was Monday-Friday, doing ERP every day. I did TMS for depression before it was FDA approved for OCD and now I just don’t have good insurance to cover most OCD specialists/treatments, so that’s disheartening. I need a job to access good insurance but I can’t work in this condition. I’ve also been told to try DBT for emotional regulation. And that I should seek an autism diagnosis. I-CBT is also something to look into if you have not had success with ERP. I’m proud of you for trying so many things. I know it’s not easy to try and try and try again… Each time I lose a bit of hope. But please, keep going and don’t give up on yourself. You’re young and you really do have your whole life ahead of you. You’re worth it. When people don’t respond yes it makes me feel alone, but I know that it’s always a gamble. I mean people just scroll through the app whenever they feel like it, so the people you resonate with most just might not get to see it. Or they might not know how to answer. Or maybe they’re struggling and came on here looking for support themselves. Trust me, you’re not alone. And thanks for answering me and letting me know that I’m not alone either. I wish you all the best. I hope you always find the support that you need. 🙏🏽🙏🏽🙏🏽
@sick&tired Thanks! I’m sorry about the financial situation. I’m in a bit of a bad financial situation as well, cause my parents are making me pay for treatment and I’m a college student and have limited money. I’m not a doctor and don’t know your exact situation, but if you’ve tried a bunch of things including TMS that haven’t worked, and you’ve tried IOPs and it hasn’t helped, you could look into Butler hospital in Rhode Island. Not many people do it, and I’m not saying you should, but I just wanted to make you aware of it if you weren’t already, cause it’s something I’ve been looking in to (my parents are very against it). They have two procedures there, deep brain stimulation and anterior ventral capsultomy, which are treatments people can try if they’ve exhausted all other treatments and for the most severe cases. I’ve contacted some people on instagram that have had good results with the anterior ventral capsultomy procedure. My psychiatrist is recommending for me to contact butler hospital or somewhere that does deep brain stimulation because I was unsuccessful with TMS, but it’s expensive even with insurance, and my parents said I’m not doing it. Not saying you should do it, but it could be worth looking into. I called the person in charge of it to get information about it, and she sent me some stuff about it
@sick&tired Also, if you haven’t tried a med that works on glutamate, that’s probably worth a try. My dads coworkers daughter had bad ocd and tried memantine and it became manageable
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