relief from severe treatment resistant depression?
September 3, 2023 12:06 AM   Subscribe

I have MDD (major depression) and BDD (body dysmorphia) which causes constant SI (I spend hours talking to crisis hotlines daily). I have tried so much (meds and therapy and lifestyle changes) to feel better over the years, and am still suffering. What else can I do? I need hope from people who have been there and recovered.

Things I do currently:
*CBT session once a week, DBT group once a week, other therapy once a week which is a combination of grief processing and trauma work
*exercise daily (weights, cardio, yoga, or nature walk)
*around 8 hours sleep/night
*eat fresh fruit/veg, protein, and enough calories
*socialize with (supportive, kind) friends 2-3 times a week as well as regular calls/texts with them and family
*take my SSRI and an SSNI as prescribed
*journal about my moods
*avoid alcohol, enjoy caffeine in moderation
*volunteer in my community when I have the energy, 1-2x month

Other notes/history:
*my bloodwork ruled out any current physical problems (although I deal with several lingering disabilities from my cancer history; these contribute to my distress)
*unfortunately I cannot have a pet at this time
*I've tried other classes of psych drugs in the past and had bad (as in allergic, dangerous) reactions to them (mood stabilizers, antipsychotics, etc) as well as all existing SSRIs and most SNRIs and even ADHD meds
*have tried other therapeutic modalities (IFS, EMDR, etc) with no improvement
*Inpatient and partial hospitalizations always worsen my mental state
*While I had a happy and stable childhood, I have experienced enormous personal losses and trauma over the past decade of my life (late 20s-late 30s), which would make anyone pretty miserable, and so whatever is faulty in my brain is compounded by those experiences.

I had been pinning my last hopes on Ketamine and/or psilocybin for a while. I finally tried both earlier this year; Ketamine was really unpleasant overall (a low dose felt like an hour long panic attack), and psilocybin (also a low dose, between micro and threshold) was nice for a few hours, but I did feel significantly worse in the comedown/aftermath which lasted almost a week. (I set intentions and integrated both times). Should I try different doses of those, or LSD or MDMA next? Or the TMS (brain magnet) treatments? I feel like I need immediate relief; my suffering is acute and often reaches the level of an emergency. Every time I check something supposedly promising off the dwindling list of options, I feel like more of a lost cause and more disappointed.
posted by CancerSucks to Health & Fitness (21 answers total) 11 users marked this as a favorite
 
For me, ketamine finally became effective after about 3 months of weekly treatments. It became much easier to tolerate and rather enjoyable over time. It didn’t work instantly for me, like for some. I have moved over to psilocybin micro-dosing and have been able to avoid depression and in fact have really imprint life wrt getting passionate about hobbies and connecting with people. I need to avoid taking more than 0.3 g of dried shrooms to avoid an anxiety inducing come up, but even with anxiety there comes a afterglow that lasts a week or so.
posted by waving at 3:36 AM on September 3, 2023 [4 favorites]


Someone I care about had success with TMS for some period of time. It definitely got them out of crisis mode and into better functioning. I think the best thing about it is that at best, it really helps, and at worst, it does nothing and you're out a lot of time and probably some money, but there's no long term risk.
posted by hydropsyche at 4:05 AM on September 3, 2023 [1 favorite]


You didn't mention electroconvulsive therapy, so that could be an option to add to the list. I think it's specifically for acute depression that doesn't respond to other treatments.
posted by john hadron collider at 4:50 AM on September 3, 2023 [12 favorites]


I personally do better without any sort of medication. I really thought it was helping when I was on it, but it was making things worse. I realize this is a pretty controversial opinion and someone will yell at me that it’s dangerous to tell a depressed person to go off their meds, but that’s what worked for me. I would never recommend cold turkey, tapering VERY slowly is key. Look up the Ashton manual to get an idea, it can be applied to meds other than benzos. I also do better without caffeine.

Occasional psychedelic use (ketamine, LSD, MDMA, mushrooms, nitrous) helped a lot when I was more depressed/anxious - however, your constitution sounds different from mine if they make you feel worse afterwards, so I’m not sure I’d recommend others. Your reaction to them does make me think that you’re one of those people who is very sensitive to changes in equilibrium or homeostasis or whatever it is that also makes most meds/drugs not good for me.
posted by wheatlets at 5:39 AM on September 3, 2023 [1 favorite]


I have found that "hoping for improvement" from various treatments I have tried has not been helpful, because my depression means that my brain is always looking for ways for those treatments to fail. And if my brain is looking to make something fail, it probably will succeed. What people call the placebo effect is quite important in depression treatment, and I basically have a reverse-placebo effect. I see something that might be similar in the way you talk about checking things off the list of possible treatments as well as some of the side effects you mention.

What has been more successful for me is trying to accept that the ideations exist, but also accept that they are just some of the obsessive thoughts I have. During my worst period I was having constant thoughts about death but never made a serious attempt, and I realized that the thing I was most afraid of wasn't death. I was actually most afraid of my thoughts about death, afraid of the SI themselves. This was after I had spent around 2 months working on basic meditation, which has only been somewhat successful but did make me better at thinking about my thoughts. So I decided to spend several weeks (while still taking my antidepressants that sort of helped) exhaustively exploring those thoughts and working out what they meant. I made a flowchart of all the specific ways I thought about it and wrote down the next thought I would have in the sequence. This technique was hard but worked well, and I haven't had serious SI since. I still have the thoughts occasionally but it's easy for me to recognize them as meaningless obsessions instead of statements of truth so I can go back to what I'm doing. I'm not "cured" and I'm still working through my depression/anxiety, but the constant SI are gone.

You may not be ready for something like that now, but there are ways to get there. Micro dosing can help (results are mixed), but the main point of psychedelic treatment is to take a large enough dose that allows you to change your own mind and overcome some of the fears that paralyze us. If I were you I would try to think about how to change my own mind instead of "hoping" for improvement as that attitude has never really worked for me. A larger psychedelic dose is one option as there are not many downsides if you already are suffering strongly. Yes side effects and possible negative psychedelic experiences are bad, but so are constant SI.

I can't predict how my treatment or yours will go, but it is absolutely possible for you to get better in important ways. You're not the same person as me (obviously) so what I wrote may not be right for you, but yes it is possible to get better, and good luck!
posted by JZig at 5:49 AM on September 3, 2023 [4 favorites]


SI and rumination are side effects of some psych medications - perhaps it’s worth doing a medication review?
posted by cotton dress sock at 6:33 AM on September 3, 2023 [7 favorites]


About 25 years ago, I cycled through a substantial number of conventional psych meds (i.e., not ketamine or psilocybin or anything like that), either alone or in combination with each other. None of them worked, and I think most of them actually made me feel worse. At the time, I was unemployed and spending a lot of time indoors, alone with my toxic thoughts. What finally helped was getting out and doing volunteer work on a regular schedule, once per week for a three-hour shift, along with shifts for special events. The volunteer work led to a full-time job and marriage.

Oh, and electroconvulsive therapy helped lift me out of a particularly bad episode of depression, though the positive effects faded after a month or two.
posted by akk2014 at 6:43 AM on September 3, 2023 [4 favorites]


Along with ECT, have you ever considered or spoken to a specialist about OCD? You cannot CBT/DBT your way out of OCD - it's a tool in the toolbox, but frontline talk treatment for persistent/obsessive intrusive thoughts, especially if they may be related to trauma and/or brain damage, is highly customized to your particular presentation and to the particular mechanisms of OCD.

Anyone who's had cancer treatment has a higher-than-population risk of having non-emergent and (seemingly) subclinical vascular and/or tissue damage in the brain. Have you had a head CT and MRI? Have you seen a neurologist? Bloodwork is frustratingly bad at flagging this category of problem, and I can't trust that your inpatient stays ever brought it up even though they 100% should. Bloodwork should show the kinds of flags that send you to a rheumatologist or endocrinologist, but it's worth pressing if your GP and/or ONC (who should probably be augmented with an Internal Medicine specialist) are just running and looking at "cancer/not yet middle-aged" results and not "persistent intrusive thoughts and major depression cancer/not yet middle-aged" results.

I'm assuming you're in the US and so are getting overall shitty care from individuals who DO care but have no real power, but it hurts my heart how many people I know who have "mental health" problems and not enough money or power to get medical investigation FIRST, before spending years talking endlessly and trying desperately to stay alive until finally the lurking whatever becomes emergent and they get their first real diagnosis in the ER. And that's why most of my "and they got better!" stories are a little bittersweet, because it's hard to get the best version of better after suffering (and getting irreversible damage) from Crohn's or Lupus or Celiac or TBI or EDS or something similarly "silent" if you are poor (and often female-presenting and/or queer). But! They all say they'd rather have delayed-treatment Crohn's and a significantly-improved mental state than how it was before.

As a miniscule little narrative reframe, I would recommend replacing hope with interest, and not treating the list of options as finite. Every day we learn more about the effect of various medical conditions on "mental" state, and intrusive thoughts already figure high on the list of "indicators something is not working right somewhere". I think along with the horrid US healthcare system, shame on top of one's own daily symptoms makes it really hard to demand and get the whole smorgasbord of medical clearance BEFORE setting a course of psychiatric medication and therapy, but it's worth at least challenging your existing care team with the simple questions "What makes you so sure this isn't a physical problem? What is the evidence?"
posted by Lyn Never at 7:22 AM on September 3, 2023 [10 favorites]


TMS has put my depression at bay for a year. I’ll have to do it again I’m sure. I found the treatment unpleasant and should not have attempted to work in that time period. It was worth it.

I will tell you that the first three weeks were absolutely awful and I had suicidal ideation during that time, induced by the therapy. I am not sure if TMS will be an option for you given the crisis state.

This leaves ECT …
posted by shock muppet at 8:34 AM on September 3, 2023 [1 favorite]


comic gary gulman is an advocate for ect; he's extensively quoted here with uchealth about his experience.
posted by j_curiouser at 10:01 AM on September 3, 2023 [1 favorite]


Coming in to say that ECT is your next option. It is used specifically for treatment resistant depression. It is very safe. It has far fewer side effects than any medication, including psychedelics.

I used to work in an inpatient psychiatric unit where we would occasionally get patients who were catatonic with depression. As in, literally unable to talk or move. ECT is what brought them back to life. We also got plenty of just very, very depressed people who had tried everything else, and ECT worked for them too. The ECT unit in the hospital saw other people regularly as outpatients. Like most mental health treatments it probably won't work on about 10% of people, works well for 80%, and is a miracle cure for the last 10%.

It has a scary reputation but the conspiracy theorist in me suspects it's not more widely promoted because drug companies don't make any money off ECT. Which sucks, because it's very effective and like I said, doesn't really have any side effects. (The stuff about memory issues doesn't really apply these days.)
posted by EllaEm at 10:54 AM on September 3, 2023 [1 favorite]


This article had a strong effect on me and someone close to me. I'm sorry you're having so much distress. I'm not a fan of the gratitude approach, but I do agree that Depression Lies and keeps you from experience the things in life that are working and only focuses on what feels bad. I agree that testing for changes that may have occurred in your brain are necessary, and maybe try the ketamine several more times. ECT may be an option. You are working hard to manage this, and I hope you will persist. Best Luck.
posted by theora55 at 11:59 AM on September 3, 2023 [1 favorite]


Response by poster: Thanks all, it sounds like the biggest takeaways here are either a macrodose of shrooms and/or tapering OFF the psych meds I take now (effexor and lexapro).

I do have full body & brain MRIs/PT/CTs as part of cancer follow up and there's no sign of anything else going on.

I never tried ECT, but my sister did and had a very negative experience; almost a decade later she still deals with memory loss and cognitive problems. This (and the fact that I would lose my income, since I'm a freelancer/IC rather than an employee with health leave) means it's not something I'm going to try.
posted by CancerSucks at 12:31 PM on September 3, 2023 [1 favorite]


I lived 30 years with largely treatment-resistant depression and then was diagnosed with Bipolar II. I recall reading or hearing that, because of bipolar, being on SSRIs/SNRIs had likely made things worse. I've been treated for Bipolar II for about three years now (including with TMS) and although I do often still grapple with depression, it is an entirely different kind of depression than before, when I would be lost and unable to get up off the floor for significant stretches of time. Those deep pits of despair with SI are a thing of the past. I'm not cured, by any stretch, but because the manic side of my mood is regulated (thanks lithium, thanks seroquel) I've been much more able to manage my depression, and to participate in my life and be a better parent and friend, including to myself. Feel free to MeMail me if you have any questions.

I'm not one to recommend that you taper off your medications without the guidance of a medical professional, but since we're here I'll say: if you decide to taper the Effexor, taper VERY slowly. I've been on and off many medications and that by far had the worst withdrawal symptoms.

The only other thing I'd say is to recommend you don't discount approaches or medications you tried in the past which at the time didn't work out. Bodies are weird and change over time in ways we'd never expect. At the time you tried X it's possible that because you or your body had Y going on, X was doomed to failure. But maybe now that Y isn't present, X might have a chance to make a difference.

I hope you find some relief.
posted by jerome powell buys his sweatbands in bulk only at 1:44 PM on September 3, 2023


Try the body image workbook. It s good! :-) You probably notice how when you feel most like hell it spikes.

Trauma work is loooonnnggg but look how resourceful you are, how determined to push on.

Keep doing the safe stuff.. kind friends etc
Many traumatised and depressed people can t mobilise for this.

Staying out of harms way may eventually edge forward a new narrative.
posted by tanktop at 2:23 PM on September 3, 2023 [1 favorite]


Is it possible you have a misdiagnosis? Or your current diagnoses are not the whole picture? I am wondering about neurodivergence (autism, adhd, lingering effects of cancer treatment) as well as delayed grief, bipolar mood shifts, borderline attachment patterns or structural dissociation. Looking through your ask history, you’ve noted that attachment triggers are a major precursor to destabilization. Your paradoxical reactions to medication and the many treatments you’ve tried, as well as your ability to maintain a high level of function while in enormous distress, make me curious…

I wonder if there is some piece you’re missing that can’t be adequately addressed without psychoeducation and a more targeted approach. Also, perhaps somatic or spiritual takes on trauma would appeal? I wish you the best!
posted by lloquat at 3:12 PM on September 3, 2023 [4 favorites]


Best answer: What route of administration of ketamine did you take? If you took the low oral doses most people are taking these days, especially via those subscription services, they're just not very effective. If you haven't tried infusions and/or intramuscular injections given in a traditional six infusions/injections over two weeks loading series, you really have no idea if you're a ketamine responder or not, and that remains the gold standard. Your dose would be adjusted during this process but the ROI and frequency is as important if not more than the dose, and I ask because on paper you are pretty much a perfect candidate for ketamine.
posted by colorblock sock at 4:50 PM on September 3, 2023 [6 favorites]


Have you tried light therapy with 10,000 lux? 20 minutes a day should help somewhat.
posted by luckdragon at 8:49 PM on September 3, 2023 [1 favorite]


Second I was ineffectively treated with anti-depressants for a long time and it turned out to be bipolar 2 but the hypomanic symptoms were very short-lasting and subtle until the one time they weren't.

Also, I think trying a shrooms trip in a safe environment could be helpful.
posted by lookoutbelow at 9:12 PM on September 3, 2023 [1 favorite]


So one thing that I've been talking about with my fellow depressives who have struggled with SI but are in better places now, is the importance of hope. Not just medication, or a new treatment, to address the symptoms, but real hope. Sometimes, the way we feel is so utterly bad because our minds are telling us that things are bad right now, and we need not just lifestyle changes but a completely different situation for ourselves.

hope can come from:
-plans for the future for a relationship
-plans for the future for housing
-plans for the future for work
-plans for the future for a hobby.
And more!
posted by corb at 9:53 AM on September 4, 2023 [1 favorite]


your decision, of course, but the suggestions to take a heroic dose shrooms (setup for a horrifying trip), or fuck with your meds without guidance, seem fully immature and misguided. i say, these suggestions are sourced from kindness, but also inexperience and lack of knowledge about treatment resistent depression.

as far as ect - med tech has advanced in ten years. and, all the barriers you put in front of yourself can be removed with some planning and action (which, are fucking near impossible with depresh. near.)

ketamine infusions are worth a try. i did that.

talk therapy has been my best tool - having an outspoken ally who will bring all their experience to bear to keep you alive.

don't take half measures trying to save your life. you are worth all the effort you can muster. with an educated and committed treatment partner/team.

best, j_
posted by j_curiouser at 11:51 AM on September 4, 2023 [5 favorites]


« Older Sex question   |   Immerse me in web design Newer »
This thread is closed to new comments.