I don't know what mental health treatment to engage in next.
September 28, 2019 12:23 AM   Subscribe

I have C-PTSD; I have tried a number of treatments, and nothing has really been working. Things are feeling more dead-endy than normal, and I don't know how to proceed or what treatments to seek. At this level of care it seems like I'm expected to 'choose your own adventure' through treatment. This is confusing and decision paralysis is a serious thing for me.

I have been diagnosed with PTSD, but would qualify for a C-PTSD diagnosis if one officially existed. I've been in a holding pattern of "I can function, but things are shitty, and have low key suicidal ideation almost all the time" for the last several years. Three years ago I was hospitalized because I wasn't sure I could keep myself safe. I was hospitalized for four days and it was incredibly traumatizing. I have done everything within my power since to avoid being hospitalized. In the last 6 months things have kind of deteriorated because of some career stuff, and just other difficult life shit. I'm having regular panic attacks, I can't problem solve well, and I'm just overall exhausted and spent. I can function, sort of, some of the time.

I've tried a bunch of shit to try and get better. I am at the point where I am out of ideas, and am having a hard time researching possible treatments without crossing into woo-woo territory. My GP is relatively awesome, but has stated he's out of his depth with these problems, and isn't a great resource at this point. He's given me a pretty solid green light that he'll fill out a referral for just about anything I can find.

I have a therapist, she is relatively new to the field. Our sessions as of late usually leave me confused, frustrated, and I don't feel like I'm making any traction. We have explored things through a CBT, DBT and ACT modalities, to varying success. I don't feel like any of this actually addresses the underlying problem, and are more of just 'learn how to cope with your busted ass brain.'

On the medication side, I've got a really long list of medications I've had really rough reactions to (everything from extreme insomnia to disassociation). I've taken a genetic-profile for medication reactions that has proven inconclusive.
I've tried so many drugs; almost every SSRI, SNRI, TCA cleared for sale in the US, a couple off-label meds and anti-hypertensive drugs. I have had such bad reactions to these medications that I'm very hesitant (to the point of terror, given past med reactions) to try a MAOI and heavier anti-psychotic drugs. In the last six months as things have degraded, I've tried reengaging with a couple psychiatrists, and more than once the psychiatrist declined to take me on as a client because of the amount of bad reactions I have had. The psychiatrists willing to take me on haven't really struck me with any confidence, and they've been like 'I dunno, lets just try these [insert heavy fucking drug with known insane side effects here] or maybe exercise, take some vitamins and relax a little?

I've been through two rounds of EMDR with different providers with no response.
I did a full treatment of rTMS with no response.

I have explored ECT, but the time commitment and cost are prohibitive right now. The rTMS cost a bunch, even with insurance, and I was lucky that my family was out of town for the summer while I was doing it. These kinds of treatments are hard, because I still need to make an attempt to keep my shitty job.

I cannot currently afford ketamine treatment, but would if it was covered under my insurance (which it may be once OHSU completes their ketamine clinic).

I really can't handle support groups or group therapy. It spikes hypervigilant and anxious symptoms to an extremely uncomfortable and unsustainable point. I would endure this if it was absolutely guaranteed to help.

Located in Portland metro area with decent providence insurance. My insurance company has nearly zero resources for helping plan treatment. Like, once I found out that TMS was a thing, it worked through the insurance really fast, but I did all the legwork.

Basically, I don't know what to do next, I'm feeling super hopeless, and while I know this is a symptom of PTSD, don't feel like this is curable. I need to know who to talk to to try and make a plan for treatment, if that exists. If not, I need suggestions for legitimate treatments to explore.
posted by anonymous to Health & Fitness (12 answers total) 6 users marked this as a favorite
MAOIs don't have side effects that are particularly bad relative to those of other antidepressants; they just require a dietary regimen that's not particularly fun. In other words, it sounds like you're classifying them closer on the spectrum of scariness to the antipsychotics, and I don't think that's right. Just a suggestion.

Good luck to you. I'm sure the world is better off for having you in it than not.
posted by praemunire at 12:44 AM on September 28, 2019 [1 favorite]

What I choose was to go to hospitals that specialized in treating this.

I traveled litterally across the country for this inpatient care which was very specialized and helpful, all the patients had PTSD as a primary dx. But, it is still inpatient care and there are things about that are just really difficult . I definately walked out of those hospitalization on meds that worked for me in the moment, and way more stable than when I went in. Looking for centers that specialize in disassociation may be an option, but it depends on the severity and presentation and how it is impacting your daily life( some disassociation is common in PTSD, but it can be severe enough to be an actual disorder in and of itself, and not very many places treat that and even fewer treat it well. Those places are well versed in giving out referrals, even if you don't qualify for their program they may know where you can go)
It's been an long time since I was hospitalized and my recommendations would be very old at this point.

You may have a decent IOP or PHP program in your area to qualify for to do some more intensive work, but it will require groups, if you think this is exacerbate your symptoms, going straight to inpatient to get medicines adjusted and some tolerance would be better.

There really are some great resources out there, but they are hard to find. Here
is one I know of (that I have not been to, but was told it was good) I'm linking it because it gives a good idea of what to look for in a hospital program.
posted by AlexiaSky at 1:34 AM on September 28, 2019

From an anonymous member:
I’ve been involuntarily hospitalized at a shitty hospital once and years later voluntary entered inpatient hospital care at an excellent program. The experiences were night and day different. If your hospital stay was an emergency with the hospital chosen without any research, I’d look into whether there are any inpatient facilities that might be a better fit for you (that would be covered by insurance). Inpatient treatment changed my life for the better, and I don’t think I would be where I am today without it.
posted by taz at 7:04 AM on September 28, 2019 [2 favorites]

I have a therapist, she is relatively new to the field. Our sessions as of late usually leave me confused, frustrated, and I don't feel like I'm making any traction. We have explored things through a CBT, DBT and ACT modalities, to varying success. I don't feel like any of this actually addresses the underlying problem, and are more of just 'learn how to cope with your busted ass brain.'

Please continue seeking a therapist you feel safe with. There is some strong research that indicates that the strong patient/provider relationship is more important than which therapy modality is used.

You deserve a good relationship with a therapist. Have first appointments with a few until you find someone that doesn’t leave you feeling bad after an appointment. I know that’s a lot of effort, but you are worth it.

That said, what I like about DBT for myself is that the focus is coping with and accepting my busted ass brain. Trauma broke our brains. We’ve glued them back together ok-ish. Now we need to find some materials that will hold our brains together a little more securely. It turns out that relationship is one of the best ways to heal brains. And the therapeutic relationship with your provider can’t be effective without trust and safety.
posted by bilabial at 7:10 AM on September 28, 2019 [1 favorite]

Probably should comment anonymously but whatever. I am in the same boat, complex PTSD and potential dissociative disorder separate from that which gets worse when I try to get treatment.

My latest approach is to try to find an attachment oriented therapist because the attachment disorder aspect of my issues is most problematic right now.

I'd wonder what exactly didn't work with EMDR. I hear it is fairly unusual to have no effect whatsoever. Perhaps you were dissociating in those sessions and needed to be stabilized more. If you haven't done any expressive arts therapy that might be a helpful route to take. Sometimes the trauma is more problematic due to body memories and emotional flashbacks vs thoughts/verbal understanding especially if there's a component of an unsafe caregiver from birth, and expressive arts help get to the stuff we have trouble putting into words.

Something that was important for me to learn is that daily life coping skills ARE important and a perfectly valid approach to treating my trauma. It doesn't necessarily heal the traumas, but sometimes we have to learn how to cope better with daily life or all that trauma processing isn't really going to be helpful. If you can't be in your body comfortably to track emotions and tolerate them or if you're feeling intensely suicidal on the daily, or if you dissociate frequently, then most therapists wouldn't try to address the trauma directly. At least not on an outpatient basis.

I was undergoing treatment with an EMDR therapist and had to stop because the derealization was interfering with my daily life. So now I'm on the coping skills training train and there's nothing wrong with that. When I can get through a week without being totally overwhelmed, obsessive, dissociative or passively suicidal then I can try trauma processing again but in the meantime it's a waste of money. Trauma therapy requires stabilization first.

I also was recommended this resource which you may want to consider: Workbook
posted by crunchy potato at 8:51 AM on September 28, 2019 [1 favorite]

Have first appointments with a few until you find someone that doesn’t leave you feeling bad after an appointment.

I am not the OP but as someone with a similar experience, you are vastly, VASTLY underestimating how ineffective therapy is for people that just don't respond to it. I've been seeking treatment since 1994. I've lost count of how many therapists, psychiatrists, etc. I've tried. I have literally NEVER, not once ever, not felt bad during the entire appointment and after it.

Really. When we say therapy doesn't help we mean it. It's not a selection problem.
posted by Violet Hour at 9:06 AM on September 28, 2019 [5 favorites]

Somatic experiencing changed my life. I’ve been off psych meds for years after at least a decade on multiple medications. I don’t want to share much here, but I consider PTSD something I used to have. You can learn more and look for practitioners here.
posted by FencingGal at 9:12 AM on September 28, 2019 [4 favorites]

If it helps, I've spoken with an EMDR therapist who had come to the conclusion that EMDR was not particularly helpful for complex trauma; she was in the midst of training to provide Somatic Experiencing.

I do think you need a therapist with actual expertise in treating complex trauma. Modality matters less than training and experience; training and experience are very important. I also agree with the comments saying that "coping skills for your busted-ass brain" are generally the first steps in effective trauma therapy, so that you have the skills necessary for doing the processing work that are the next steps (rebuilding your life and reintegrating the trauma into it in non-overwhelming ways are generally the steps after that), but you do need a therapist who can help you with all aspects of that journey. That takes training and experience in specifically treating complex trauma.

Do you have a supportive person who could help you research therapists with that training and experience, and possibly advocate with your insurance company to cover them even if they're out of network? (It is TOTALLY reasonable to say, "I need this level of care, your plan currently doesn't offer the resources I need, you need to find a way to cover it," and it's helpful that you have a GP who could likely advocate for you, too.)
posted by lazuli at 9:35 AM on September 28, 2019 [2 favorites]

Hi, trauma therapist here, and former fellow PTSD-haver. As a few people have mentioned, a therapy like Somatic Experiencing would probably be a better fit for you. What we know now about trauma is really that it's a sort of injury to our nervous system, and to be effective, whatever treatment you get really needs to involve the body. The work of Peter Levine (SE founder) might be a good place to start - he has written many books and articles. The go-to is Waking the Tiger. If you can't find someone who specifically does SE, I would recommend looking for therapists who use the word "somatics" in their profiles. I also know a fair amount of therapists in PDX who are very good and experienced, and if you want some names and also further resources to read that may help, please feel free to Memail me an email address that I could send some additional resources to. I wish you the best, be well.
posted by fairlynearlyready at 8:41 PM on September 28, 2019 [2 favorites]

Third-ing somatic experiencing. I also think CBT/ACT techniques for anxiety can be counterproductive for trauma (different fear mechanisms).

It *sounds* like your primary issue is the C-PTSD if the ideation is persistent but stable. ECT is usually indicated for acute/active suicidality (unless it's maintenance). But if you haven't tried augmentation, lithium in particular has a good evidence base for suicidal ideation (anecdata my ideation went from a 9/10 to 1/10 in two weeks).
posted by ahundredjarsofsky at 2:53 AM on September 29, 2019

I also know a lot of people who use cannabis not as a /treatment/ for PTSD but as a way to mellow out the emotions of PTSD such that they can actually engage in therapeutic work.
posted by corb at 8:21 AM on September 29, 2019

I’m not at all sure if this would be helpful but the podcast “This American Life” recently had an episode about a trauma therapy called cognitive processing therapy. The episode does feature one woman’s story of working through a traumatic childhood event so please be aware of this if you decide to listen to it. I believe the therapist featured is in the PNW.
posted by ticketmaster10 at 2:00 PM on September 29, 2019

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