TW: The 'real' me inside - I come with an SI warning

If you are interested in clinical trials, @Chasingsunsets , this is where I searched: https://www.anzctr.org.au/

You could search on a term like "Depression" for example, or the specific substance. There are PAT trials in a lot of states 🙂 - I forget which one you are in. You can also filter the results by whether or not they are actively recruiting or not yet started, etc etc.

Oh thanks @AlwaysMyself I do find reading about this stuff really interesting. Not yet sure what I need to fix essentially, there’s a lot but not sure if I can or if it’s just maintenance for me. But operating on not much of a brain atm as forgot to pack one of my reg meds and so today haven’t had it today but anyway long story haha

I would be so interested to hear your updates on your potential trial etc 🙏

Yep, will keep you and others updates throughout @Chasingsunsets . Hopefully I will be able to commence the eligibility screening again in mid-January, so maybe by end of Jan I will maybe get confirmation?? I know I have to get an ECG to ensure I don't have any heart issues that would be dangerous with the treatment; don't expect to have any.

I have been on "maintenance" mode for the past 10 years, not believing anything would help further. Then I got fed up with how things were (putting it politely lol, you've read it before) and decided about 18 months ago that I needed improvement. And so my search began. I tried doing Transcranial-Magnetic-Stimulation (TMS) treatment last December, but stopped after 3 weeks due to an abnormal reaction (overseeing-psychiatrist said they thought it was coincidence as it was not in the literature as a side effect, but it is WAY too coincidental and non-depressed brains are reported to have the same side effect I experienced, so it is absolutely a possible side effect).

Are you happy enough with how things are for you currently @Chasingsunsets ? Or wanting to explore other treatments not yet tried?

I have all my fingers and toes crossed for you @AlwaysMyself, so keen to keep in touch re your updates for sure.

I am honestly so impressed on your tenacity and efforts to change the status quo it really is inspiring.
Ahh I’d like things to be different, again “change the status quo” I’d say. I am recently on a new medication from earlier in the year and chasing the dominos from falling in a few areas so would like to have a chance to see things from a Birds Eye view at some stage when things settle. Feel like I don’t have sight on anything really just been lost in it a bit maybe, but all good, how’s your night going?

@Chasingsunsets sort of like "not seeing the forest for the trees"?

It can be hard to see when in the midst; sometimes that's where people around can be helpful to see a more birds-eye view, I've found.

I'll be starting to go off my medication next week (or so the plan is). My counsellor will be useful in helping to monitor how things are from an outside perspective (if I get worse or improve, etc). Because I'm coming off the medication for the trial (starting early to give myself as much time as possible), I realise that it will be hard to know if coming off the medication improves/relieves my anhedonia or not, because if it does improve it could have also been from the clinical trial treatment. I guess the trial assumes that people won't "improve" by coming off medication, because there is no need (apparently, from what I was told a few months ago) to be off the medications for a number of weeks before the trial -- just needs to be off the medication at the start of the baseline-taking at the start of the trial.

How has the new medication felt for you?

Yeah, exactly I see it as a massive bowl of coloured m&ms and I have to find the gold one hehe. It does help when you have people around that can help create the Birds Eye view that’s for sure.

ah I see, how are you feeling re the plan of coming off your meds? Will definitely be a process hey. Can be very rough as you know. It’s awesome that you will be in touch with counsellor and doctor 😊 throughout this process. It makes complete sense why you are coming off it so it doesn’t blur the possible effects of the treatment, after all perhaps the medicine hasn’t beeen working as well as you liked so perhaps giving yourself a “re review” of it almost aswell, which is handy!

Definitely will be around so feel free to tag me through your journey off the meds aswell.
The new meds have good and bad side effects for me. It’s been interesting. Definitely don’t understand the hype of them 😅. But they have improved functioning somewhat so that’s been good. It’s the most regular I have been on something in my whole life so that’s saying something that I do see some worth in them 😅. Just handy if I don’t forget to bring them with me. Not sure I like being tied to a med though, it’s a bit unsettling but it’s interesting. I am super mistrusting of everyone so the only plan I essentially stick with is my own 😅🤭 oh I rate my relatively new psych too, but trailing a new therapy and hit a rather large speed bump of an out of session reaction so lost confidence in the process of the therapy which for me is super disappointing, it wasn’t meant to go that way and I wasn’t meant to feel this way about therapy. I have never had the option to do real therapy was just way too unwell most of the time that I was a liability and likely just not in the right space to learn or progress or take it in. Plus as they say ‘real therapy’ can make things worse so likely wasn’t really the time to be doing it back then. Now though, finally had a bit of a chance to ‘get the real work done’ and I’m off it, definitely not consciously afraid to dive in, I’m not sure it’s a thought of not wanting to do it, it’s a feeling so that makes tackling the obstacle harder I think perhaps.

I love that you use M&M's as the analogy @Chasingsunsets 😍. Next to ice cream, M&Ms rank second for me. I have a "rule" about trying all the flavours I find. 😂. When I find a Golden one I'll have to post it to SANE to post on to you 🤣😂.

I'm feeling OK about coming off the meds. I am realistic - I expect to get some side effects, especially physical "brain zaps". I honestly don't know what to expect with emotional-intensity, mood or SI -- perhaps no change? perhaps worse? i will have the option of private hospital if it is too severe, but I don't expect to need that.

I did consider coming off my meds a year ago, because I wasn't sure if they help or not and was curious to know. But the risks of coming off medication (and not coping) were too much of a potential risk for me to do that without some reason to beyond curiosity. A psychiatrist review in January said my current meds were still the ones they would recommend based on my MDD and chronic pain and SI.

I'm glad there has been some improvement for you with the new meds, but also sorry that there are also some bad side effects. Seems to often be the way with medications for many people. i think I have been relatively "lucky", or at least with my psych medication. I have only had minor side effects when commencing a medication (itchy) or when forgetting a dose (brain-zaps).

I am wondering what "only plan I stick with is my own" looks like for you?

I can understand the feeling of only being able to rely on yourself. I chatted with my counsellor a few weeks ago about how I was raised to be self-sufficient / self-supporting, and how it feels "wrong" to seek help or support (other than paid) because I was taught to not be "dependant" upon other people's help. But am trying to change this to be able to accept the middle-ground that we as humans are designed to be social/communal creatures, not isolated and self-sufficient.

I am glad you are learning to trust your new psychologist. It can take time, and that is OK.

I'm curious what you mean by "real therapy"? (as opposed to what?)
I think its OK to sometimes not be ready to dig "deep", it's sort of like stabilising a person's condition in the Emergency Department (e.g. breathing, bleeds) before you can begin surgery on them. People need to be supported to be able to undergo more intrusive work, and that can take time (and trust!) to develop.

Still here just got signed out @AlwaysMyself then it didn’t save my draft like it does normally if you get signed out 🤯 lost my msg to ya! Just rewriting now

Haha @AlwaysMyself yes I need to contact m&m management and see if they can create some gold m&ms now 😂😂. I am right into the mini m&ms lately they are good 😊

I am glad you are feeling good about coming off the meds, yeah it will be interesting to hear what you experience as everyone does have similar and different side effects hey. Perhaps you could even feel better after the initial withdrawal who knows 😊 (a stretch but still a possibility!!)

I think you made a really wise and balanced decision re timing of when to stay on and come off the meds. You definitely have a really good insight on things 💜. It’s a shame we can’t talk about which meds as I feel like we would have a pretty productive discussion about them but that’s ok! Some for chronic pain and nerve pain only over the last few years have had big reviews and bigger warnings re MH, that are also used to treat MH. I find the brain so interesting plus brain chemicals. I do personally think doctors don’t know as much as I once thought. Happy to just whack you on a starting dose or just half to start (still high in my opinion), I really think if you haven’t experienced it yourself how are brutal some MH meds are then how are they to truely meant to know. So interesting though. But yeah psychiatrists a bit better I guess as a specialist is the field I guess!

That’s so good that you haven’t had many bad side effects. I’d say this one I’m on has been the most kind to me, way least brutal that the rest I have had. I was bracing for the worst but really shouldn’t complain due to the others I have had and at least this one seems to be doing something haha. Just still titrating and working out dosages.

I am wondering what "only plan I stick with is my own" looks like for you?

Big lol! I can hear- so how’s that working for you? 😂 well that’s what I asked myself haha. Also laughed when wrote it actually. I haven’t really ever had the opportunity to trust people really in general and as for health professionals one example is I have experienced evidence of a health professional not knowing dosages and I ended up in hospital for an inadvertent O/D from the doctor long story but did have to have someone pushing air into my lungs with a bag/mask and nearly was intubated and sent to ICU. I’d say all my experiences that form my beliefs are actual evidence I have experienced. So this plus more then leads back to above.😊

Love the question back at me though it was a good one to be pulled up on haha.

I love what you are trying to change, I probably should try that too at some stage but likely not at that stage just yet. Fingers crossed I’ll get there one day 🤞

oh yeah nah I taken time to suss her out she’s not bad actually, just have to re trust the therapy process and the therapy we are going to do. Haven’t even actually really started it, was so close 😔, but it’s ok just got to accept where I am at and just work out where to from here I guess.
we have done a lot of ground work actually, not sure I’ll ever be at an ideal place for therapy maybe but she was still willing to give it a go which was amazing and it meant a lot actually.
oh yeah the “real therapy” opposed to what is a great question. It rings in my head often, but maybe a story for another time however essentially I was told I was too unwell, wasnt able to get the real work done. It’s an interesting thought all of that hey!

anyway I’m going to hit the hay, it’s been lovely connecting so glad to have caught you on tonight and hope you have a good night. Hope to chat whenever you are on next 🙏

Hey @Chasingsunsets

Ending up in the ICU having air pushed into your lungs sounds like quite a scary experience and I can understand how this would leave you feeling mistrustful. It can be really difficult to continue accessing support after an experience like this. But I can also hear that you are on a new medication now, and I want to acknowledge the incredible strength in continuing to reach out and access support despite these challenging experiences.

I can also hear that you are sitting with an open mind about your new therapy process and holding onto some hope that it will be helpful and this is so wonderful to see. Re-trusting the therapy process can understandably be difficult. Being vulnerable and opening up to someone in this space takes a lot, and when you have had some bad experiences before it can definitely make this a difficult task moving forward. For you to keep checking in, to keep reaching out, and be open to what that might means for your help-seeking is a testament to your resilience and self-awareness.

It is positive to hear that this new medication has been the most kind to you and I will be sending positive thoughts that this will continue onwards and upwards more kind experiences with health professionals that allow you to feel safe and comfortable.