Losing hope i will ever find a treatment that will help

Hi @pfig09, welcome to the forums.

I'm sorry to hear you are having so much difficulty finding a treatment that works for you. I have Borderline Personality Disorder (BPD) and I have never had much luck with medication at all (I was diagnosed 20 years ago). I have a super long list of strategies I use to manage my big feelings. Each strategy helps a little bit some of the time. Thus each one on its own would be hopelessly inadequate, but the whole toolkit together helps me to keep on keeping on. I am guessing that if you have been involved with mental health services for a while, you probably have a list of strategies other than medication too so I won't bore you by writing out my list - I know I find it frustrating when people make suggestions that I've heard a bazillion times before. If you are open to sharing, I would be interested in hearing what tools you already have in your toolkit.

Hi @pfig09,

I have zero experience of eating disorders, but I know there are others on the forum who have experience in this area. The main issue I struggle with is severe emotion dysregulation. That is, all my feelings are very big, they get triggered super easily, and they take a long time to settle. Thus all my strategies center around dealing with my big feelings. I draw very heavily on the Dialectical Behaviour Therapy (DBT) skills. Have you heard of DBT? It was originally developed to treat people with BPD but is now used much more broadly than that.

When I get swamped with a giant feeling, I try to ask myself "what do I need right now." If I have a super big angry feeling, I might scream into my pillow, punch my pillow, or ride my exercise bike to burn off the anger. If there is a thought going around and around and AROUND in my head, I might "talk" it out in an email to my psychologist. If I am super upset about something I will usually cry, rock and verbally stim (I have Asperger's along with my mental health issues). If I am super depressed, I will often lie in bed under my weighted blanket (I super love my weighted blanket). Alternatively, I might sit in the garden and focus on the sounds of the birds.

Inbetween these sorts of crisis situations, in order to reduce the frequency/intensity of such crises I:

• Try to eat healthily. I super notice the difference in my overall wellbeing when I eat poorly for a few days.
• Get sufficient sleep.
• Make sure I do some exercise each day. I enjoy riding my exercise bike, swimming and walking.
• Take things at a pace I can cope with. Due to my aspieness, I can get overwhelmed with too much going on around me, very quickly.

I have recently started having neurofeedback sessions. Are you familiar with neurofeedback? If you search the forums for "neurofeedback" the thread about it will come up.

I find mindfulness really helpful, but I know some others don't. I do know that it is something that takes practice.

There are quite a few people here in Forum Land who find different forms of art and creativity helpful. Personally, I am learning the violin and I find that really helps me to feel calm.

Um...that's all I can think of right now. Oh...I just remembered this thread: https://saneforums.org/t5/Looking-after-our-wellbeing/Got-a-coping-strategy-that-you-find-good-Share-it-here/m-p/191688#M16425 It has HEAPS of strategies that people have suggested. I hope that link works ok - that's actually the first time I've copied the link to a thread in a post!

Ok, well that all got kind-of long winded didn't it. Hopefully there is SOMETHING of use in there for you. As I said, I really don't know much about eating disorders at all so I apologise if anything I've said sounds stupid in the context of the issues you struggle with. I guess I am responding more in terms of emotion regulation, which I know is a key issue in both bipolar and depression.

Hello @pfig09 I can relate exactly to your circumstances with very similar experience especially the degrading work performance over time leading to having to cease work, I also have tried many medications and have one that is currently giving some relief, they wont allow us to talk much about medication types/names here but the black dog institute will often recommend medications that other psychiatrists wont try, by no means in a maverick way, they just have lots of experience so seeing them is a good move, you then need to get your psych to take on their recommendations, put a good list together of medications types you can ask them about and augmentation, ssri, snri, dnri, tricyclic, mao inhibitor, antipsychotics, mood stabilizers, stimulants, the black dog clinic also has other trials going on currently, but it may not be practical with you not being in sydney, there is a new class of drugs for depression being fast tracked in the US so hopefully we will see them in a couple of years, you can buy your own tdcs, I have one, but again I think if I gave much advice on it, the moderators may be unhappy, your psych might not support it, there is a reddit forum on it that has lots of information and they encourage safe use. something else I have been looking into recently is environment enrichment which is shown can make good changes in brain structure, although for most of us environment enrichment is difficult as we don't socialise and lose the ability to study or participate in activities, I play keyboards and I am trying to get back into that but it is difficult. is there a depression support group in your area? I think that could be of benefit.

Hi @getbetter, thanks for joining in!

I have sent my gigantic spreadsheet of meds, when and how much I took etc. to the Black Dog Institute Psychiatrist so that he has an idea of what we have done in the past. I hope this will help - The appointment will cost $500 and that's a lot of money when you don't have much to begin with. Nonetheless, I am still trying to be hopeful that I will get something out of it. Maybe he might change the combinations of meds, determine that could participate in the tDCS trial or maybe even the Ketamine trial if it returns sometime soon. The trials being interstate is the smallest issue - I am sure I can find someone's couch to crash on for 2 months during the trial if needed. I'm willing to try anything and do what I need to, to ensure I have taken every available step towards getting better. My current (and ongoing) community psychiatrist in Canberra is very supportive of utilising the right trial for me and is happy to work with the Black Dog Institute to make it happen. My GP is the one that actually made the referral to the Black Dog Institute Psychiatrist.

Regarding Support Groups, I find it extremely difficult to talk about myself to anyone. This is a particular problem for my carers - my brother and my partner - as it is really difficult to get things out of me especially just before a crisis/hospitalisation. It's a little easier on this forum to open up but I definitely couldn't do it in person. I have the best relationship (after 10+ years) with my Clinical Psychologist and can be, for the most part, open with her. I rarely say anything in detail to my GP of many years (10+) but I still trust her implicitly. My current psychiatrist, I have only been seeing for 4 years and I still don't have that relationship with him to talk as openly as I would like. I have a new case manager at the mental health team and she seems wonderful but I think she has already been overburdened by patients due to lack of staff there so I won't expect to see her very often. My whole treating team is ok at sharing information so they are all up to date. I wish the government systems (ACT Health) and private systems (Hospitals etc.) were linked so that it would be automatic data sharing for patients, fingers crossed it will happen soon so I don't have to constantly repeat myself to each doctor.

I'll keep trying to do little bits of research each day, thanks for the suggestions 🙂

P

One of my medicos.....filled me up with every type of drug, I was possibly part of a drug trial....but nah nothing worked except I discovered that just about every antidepressant gives me tardive dyskinesia....which really is like a strobe light above your head saying to the world....MH