Ongoing Despair Despite Getting Lots of Treatment
December 26, 2016 3:02 PM   Subscribe

Hey all, I've been getting lots of treatment (4x week) for C-PTSD/incest and BPD, and yet nothing is working. All meds on the market have been tried except for one MAOI. Ketamine infusions have been done. Inpatient hospitalization was very traumatizing and inhumane. Nothing works. I'm at the point where I don't really know who I am anymore and I feel hopeless about any future; nothing interests me at all. I can barely go through the motions to make my rent and feed myself. What can I do?
posted by Kombucha3452 to Health & Fitness (17 answers total) 9 users marked this as a favorite
 
If at all possible, get sunshine and exercise, listen to music. And remember that you are a part of a community. That's all I got; wish it were more, as I experience some similar but less-critical issues. Sometimes, you just keep breathing and hope the beast recedes. Sometime, it does.
posted by theora55 at 3:05 PM on December 26, 2016


Make absolutely 100% sure that there are no possible physiological issues contributing to these other diagnoses or lack of progress in treatment (sleep? vitamin/mineral deficiencies? thyroid?)--make sure a GP is in the loop if one hasn't already been.
posted by blue suede stockings at 3:16 PM on December 26, 2016 [6 favorites]


You mention ketamine, but not ECT. Was that tried? (I am living with my treatment-resistant mother, so I can somewhat understand what you are going through. It is so disheartening to try so many things and still feel so hopeless. I wish you the absolute best care and quick resolution.)
posted by thebrokedown at 3:16 PM on December 26, 2016 [8 favorites]


While theora55 typed the first reply rather glumly, it's actually great advice. "Sunshine, exercise, music" sound like awfully thin soup. But they're huge!

What they all have in common is that they all change a frozen perspective. And that's key. I would not suggest that you find a healthier/better perspective...just that you unfreeze the current one. Nature/outdoors, exercise, and music are time-tested perspective change agents, but perspective can also be adjusted internally, quite easily, if you'll just play with some underused faculties. Practice different angles, stances, outlooks (including "fake it till you make it").

If you ever, as a child, curiously fooled around with mental framing and focusing, this would be a good time to return to that. There are infinite perspectives to occupy, and depression (and PTSD and lots of other stuff) is what happens when you freeze into one of them (good, or bad...doesn't matter; the freezing's the problem). Yet again: don't find the "right" perspective. Just find PLIANCY. Start off playing, pretending, hacking....the stuff kids do.

What happens if you imagine yourself existing everywhere EXCEPT inside your body...i.e. on the other side of the skin boundary? What happens if you try open-heartedly forgiving everyone who's done you petty wrongs....and work up, gradually to worse miscreants? What happens if you wish everyone well? What happens if you wish the mean people of the world well? What happens if you walk through the hallways of a children's hospital, imagining that everyone can "draft" on your vitality and feel just a little better - at your expense, but that's ok? What happens if you love with your elbows instead of your heart? What happens if you do everything with your left hand today? What happens if you spend a full hour without forgetting that you're on a tiny planet? What happens if you pretend this is your last day? What happens if you try to see the world freshly, and how long can you keep it up? What happens if you have backwards day where you try to love all your pet peeves? What happens if you use words you don't usually use? What happens if you use a different accent? What happens if you take a different route to work? What happens if you expand your comfort zone, and talk to people you wouldn't normally talk to and do (non-dangerous) things you wouldn't normally do? What if you do something boring, but force yourself not to be bored? What happens if you really try to connect, just with one smile (and for one fleeting moment), with the very next person you meet?

Thousands of these things. Kinda favor ones that are open and loving, but nerdy willful experiments are fine, too.

A voice will keep telling you this is silly and fatuous and not helping and you should stop. That is the voice of your frozen perspective. You needn't heed it. That is just one choice of an infinitude (and one that doesn't seem to be helping you much, so fuck it!).
posted by Quisp Lover at 3:26 PM on December 26, 2016 [18 favorites]


I was adding this when editing closed:

Thousands of these things. Favor ones that are open and loving, but nerdy willful experiments are fine, too. Don't look for an optimal one. You're not looking for a new freeze! Just keep shifting, screwing around, playing, exercising the pliancy of your perspective.

One last one: get interested in something completely random and unsexy, and make yourself be FASCINATED. It's surprisingly easy to do this; our prefs are hilariously arbitrary. PLAY with them!
posted by Quisp Lover at 3:32 PM on December 26, 2016 [2 favorites]


I'm so sorry to hear that you are going through this. My experiences are different from yours, but when I was dealing with raw trauma, what I found the most helpful was to have somebody who wasn't necessarily a therapist but just somebody who was available (over text), very nonjudgmental, empathetic, insightful, and kind of just let me do my thing (which involved spewing out a lot of emotions in a way that might, to other observers, appear erratic, frightening, and possibly annoying) for a few months. This person understood the importance of just being with me, validating and acknowledging my reality so that I wasn't alone, and for that I am so grateful.

I imagine it would be difficult to talk to family members about this, but is there anybody in your life that might be able to serve in this capacity? You may have some luck through community resources such as incest and sexual abuse survivor support groups, although to be realistic, the process of searching for someone can also be exhausting.

One other thing I remember is that I felt disheartened at how slow progress felt while I was recovering. Looking back, I think that's just kind of par the course. You may very well be improving and simply have a difficult time recognizing it because of the pain you are still experiencing. Using PTSD apps and writing in a journal helped me keep track of my progress and give me tangible evidence that, oh, gosh, there were times I actually felt that shitty! And I no longer do and couldn't even imagine the things I wrote back then! But without that kind of record-keeping and opportunity to reflect, I don't know that I would've been able to appreciate the amount of work and progress I had made.

Your inpatient hospitalization experience sounded tough and I understand your reluctance to give it another go, but for the sake of safety: if you are struggling with feeding yourself and otherwise taking care of yourself to the point that it will affect your safety, you should contact your therapist or go to the nearest emergency room.

I think you are so brave for undergoing intensive treatment and I wish you all the best in your journey.
posted by gemutlichkeit at 4:25 PM on December 26, 2016 [1 favorite]


I have PTSD and depression. I don't know much about BPD, but I do know about despair and treatment not working. I do know deep darkness. I'm getting ready to try Ketamine.

For PTSD, I found some relief with Somatic Experiencing.

If you have the money and you have someone in your area, I had an Iyengar Yoga Teacher come to my house for private sessions. I would recommend Iyengar specifically because the approach works well with trauma. It's very contained and it isn't mushy.

I found some relief with neurofeedback.

I did ECT and it helped a lot the first round (less so in two future rounds), so that's something to consider.

I have found Seroquel helpful for PTSD. If I get triggered I can take 25mg and it helps bring my system back to earth. I work hard to not stay in an activated state.

Do you have a tribe? Do you have someone you can talk openly about this stuff with? I have a best friend and we can talk about it without bullshit. If you don't have someone, try going onto psychology today and looking at the groups available. Feel free to contact me if you want.

Katie
posted by orsonet at 4:49 PM on December 26, 2016 [2 favorites]


I am not recommending this, merely putting the information out there, because the FDA is considering making it legal, but it is currently not legal (the soonest it would be is 2021): one of my friends with severe (and previously treatment-resistant) PTSD has had very good results with MDMA-assisted therapy. If nothing else is working you might look into getting into one of the clinical trials.
posted by ElizaDolots at 4:56 PM on December 26, 2016 [5 favorites]


Of course this isn't a cure at all, and YMMV, or it may not appeal to you, but I write this thinking that anything that offers a little solace is good. This artist has a bunch of (self help-y) books and journals and is also an incest survivor. She doesn't broadcast it, but doesn't hide it either and she mentions it in a number of the books. Your library may have some you could flip through to see if it appeals.
posted by jrobin276 at 5:15 PM on December 26, 2016


I'm sorry to hear that you are struggling. I have had lifelong depression and also feel like I've tried everything. I have posted on AskMefi about it more than once..

It is interesting that you mentioned ketamine. I really felt that it was my last hope. I just had 6 infusions the first 2 weeks of December and will try one more infusion next week. I'd be interested to hear about your experience (even through message)

I agree that it sounds hokey, but quite honestly exercise and healthy habits have helped more than meds, therapy etc. Vigorous exercise at least 5 time a week and getting a good nights sleep are vital. I would also second the recommendation to see a doctor and check a checkup - at least check vitamin D and maybe consider supplementing B's

I think that everyone is so different. There is no one sized fits all approach. Meds work for some. Therapy works for some. There isn't even one type of therapy or medication that works for everyone.

I also hate to give you another platitude as I roll my eyes when people do it to me, but you really need to take things day by day as far as the rent and feeding yourself etc. Be gentle with yourself. If you are too tired to cook one night and need to get takeout, do it. Don't beat yourself up.

Please message me if I can help

Good Luck
posted by kbbbo at 5:32 PM on December 26, 2016 [1 favorite]


Hi, Kombucha3452. I'm so sorry that you're suffering with this.

I am a clinical psychologist specializing in PTSD treatment and research, but I am not your clinical psychologist specializing in PTSD treatment and research. What I want to emphasize most to you is that it is not the amount of treatment that's important, but the type. Unfortunately, for complicated reasons that are not worth going into here, many providers do not offer the treatments that we know--from both extensive research and extensive clinical experience--work very well with most patients (even those with complex case presentations). If a loved one had PTSD, I would not recommend anything other than prolonged exposure or cognitive processing therapy. EMDR is acceptable if neither of the other two are available, but I generally do not recommend that as a first choice because it seems to be commonly misadministered. None of these three should last more than a few months of weekly or biweekly sessions, and if they take longer than that, I would be concerned that they are being incorrectly done. The other treatments mentioned in this thread, including ECT, somatic experiencing, and yoga, do not have the amount of extensive research support that prolonged exposure and cognitive processing therapy have. In fact, there have been no clinical trials of ECT or somatic experiencing for PTSD, and so I would feel very concerned if a clinician were to recommend them over something that we know work well (and quickly) for most people. This is not to say that they were not helpful to the people above, but I would urge you to not try them as a first course of action. Dialectical Behavior Therapy is the treatment of choice for BPD, but you would need a good psychological assessment to determine whether it's best to treat the BPD or the PTSD first.

I wish you all the best.
posted by quiet coyote at 6:03 PM on December 26, 2016 [19 favorites]


I'm at the point where I don't really know who I am anymore and I feel hopeless about any future; nothing interests me at all. I can barely go through the motions to make my rent and feed myself. What can I do?

Hey Kombucha3452, I'm one of many people who are sorry that you are struggling with this. I don't have your particular and challenging set of issues. My own issues have brought me, more than once, to a point where I could barely feed myself and wasn't able to work.

That's a shitty, uncomfortable place to be. All I could do was to take it a day at a time (or an hour at a time or, sometimes when it was really bad, one breath at a time) and advocate for myself which mostly meant reaching out to friends and family for help. Thank you for posting. Please hang in there. Please PM me if that would help.
posted by Bella Donna at 8:35 PM on December 26, 2016


I'm coping with severe C-PSTD myself. No BPD, however. I totally, totally understand about the despair and the lack of ability to do anything. To be honest, I'm kind of struggling with that now.

I can't give you any tools or tricks because I don't have any myself yet. I'm going to throw some things out because they've been useful to me in the past.

a] DBT. I went through many courses of this, in different formats, while in treatment for my eating disorder, and it really helped. There are so many tools in there that I use when I have the head for it, and some of them are really good for stopping a flashback or making the difference between surviving and falling deeper into the pit.
b] Prazosin. It's technically a blood pressure medication but it's almost exclusively prescribed for PTSD these days. It was, and is, a literal lifesaver. I don't know what I'd do without it. It's a nasty thought program.

I don't know if you've tried these already, since DBT is pretty common, but sometimes... you know?

Mostly I just wanted to say that I understand and am with you.
posted by gloraelin at 8:45 PM on December 26, 2016 [1 favorite]


I also don't share your particulars but can relate; that it's a terrible and exhausting state to be in, when every atom of your body and every associated quantum state of those atoms are telling you that your life is hopeless and doomed to a bad end. The certainty of that feeling is a lie though. Continue to explore treatment. Plod onward. When you bump up against a limit, don't think of it as a failure. Keep testing those limits, failing, correcting, failing and moving on. Keep going and applaud yourself for persevering under these circumstances. For me, it's important to spend less time alone...judging myself. I'm wishing you the very best. I'm hoping you can look down on yourself from above and say, "that person needs my help"...and then be very good and caring towards yourself.
posted by bonobothegreat at 8:54 PM on December 26, 2016 [1 favorite]


You've gotten some good advice for medical care. I can't contribute anything there.

I do know that in one very dark, horrible year of my life I found that breathing through this moment only, to be the best that I could do. And that's okay. Just existing may be all you can manage for a while. But you do need to be honest and ask for help. Someone needs to take care of those things you can't deal with right now. If a hospital stay is out of the question for you, ask your medical provider if there is a day treatment facility you could get into, an intensive outpatient program? Do you have family? Friends that you trust? When I couldn't cope with working or even making my own lunch, I had to be honest and more open than I'd ever been in my life with my loved ones. This is not the time to be proud or independent. This is the time to reach out and grab a helping hand.

A wise person told me, if you begin a sentence with "Can you please help me?" and then be honest about what you need, it's like waving a magic wand. Saying "I'm feeling awful. I'm not able to cope with buying groceries and making food. Can you please help me" gives your tribe/community the opportunity to rise to the occasion.

As bonodothegreat said, be gentle with yourself. Cut yourself all kinds of slack. Don't use ugly words against you. Treat yourself kindly and well. We'll be thinking good thoughts for you. Please let us know how you're doing.
posted by toastedbeagle at 1:02 AM on December 27, 2016 [1 favorite]


L-methylfolate? If you are low in this vitamin, your brain pretty much can't make happy feelings. I am dramatically over-simplifying since I'm in a rush, but it might be something to look into. It's often added as a second drug therapy to pair with SSRIs, etc.
posted by mirabelle at 3:11 PM on December 27, 2016 [1 favorite]


I'm really sorry you're going through this.

My first thought is sort of off-the-wall, but might help?

I'm going to do Yoga With Adriene's 31 Days of Yoga Revolution starting January 1st. If it's anything like her 30 Days of Yoga Camp last January, it'll be a combination of workouts, stretching, mindfulness, and emotional wellness work, all with the support of a big, wonderful community and a new daily video to look forward to. And you can do it at home for free with no special equipment and no yoga experience.

I think it might check a lot of boxes all at once - exercise, community, a project (and a sense of fulfillment to go along with it), and mindful work on your thoughts and emotions and self-talk.

It's one of those things that might help and won't hurt - might be worth trying?

Please MeMail me if I can help in any way. Hang in there and know I'm thinking of you and wishing you the best!
posted by bananacabana at 9:32 PM on December 27, 2016


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