r/bipolar • u/Few_Success_5216 • 1d ago
Support Needed Living with severe bipolar 1 disorder
I was told by a psychiatrist a year ago that my bipolar disorder is severe and there's basically not too much medication can do. My previous psychiatrist said my only hope was an antipsychotic injection and that one didn't work. As of right now, I'm on the highest dose of all five of my medications. I do also have BPD, DID and the full name for this is mixed schizoaffective bipolar type 1. So I also experience psychosis and paranoia. My therapist said I've been through severe trauma and I have mental illness on both sides. It's hell living in my mind daily but I do what I can. I live on disability with my mom. No kids, no relationship. I am up late because I can't sleep, I need to go with my mom to her doctor appointment early this morning. The meds make me so tired. I am sedated just to live. I would greatly appreciate encouragement if you read this. I am so scared of talking about it with others because I've had many people manipulate, abuse and gaslighting me once they find out about my mental illness. I have trauma from that.
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u/lifeofperri 1d ago
Hey so by the sounds of your post we have similar stories. I also have schizoaffective bipolar type 1 and some other mental health diagnoses (OCD & GAD). I am on disability and live with my mom as well. A large part of my illness is paranoia and psychosis & I was put in a community based treatment program for psychosis when I was 18. Meds have been moderately effective for me which I am very grateful for, but I still live with a lot of mental pain. I have tried pretty much every med available to me including a long acting antipsychotic injection. I’m 25 now so I’ve been trying different meds and combos for about 7 years. I just want you to know that you’re not alone. It’s so hard some days to not want to give up. I’m so frustrated sometimes that I have to live this way.
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u/Few_Success_5216 19h ago
Thank you, I really appreciate this! I have those same diagnosed too. I'm on one antipsychotic. It helps a lot but I feel I could benefit from a long acting antipsychotic like I did previously. I was once on two antipsychotics at one point. Anyway, I'm really glad I'm not alone because this is so stressful and people think I just need to work harder...I do what I can do. I help my mom, do chores, cook, manage finances, I take stress off my mom because she is elderly and has mobility issues. People think mental illness is not as serious and you can snap out of it, others do. But some of us can't.
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u/ALotOfDragone Bipolar + Comorbidities 1d ago
I went about 10 years thinking I would never improve. I have a diagnosis of rapid cycling bipolar 1 w/ psychotic features, PTSD, panic disorder that progressed into agoraphobia. Mental illness on my moms side and my dads side. I lost my mom at 10, i too have severe childhood trauma aside from that experience. ALL of my teenage years were wasted to mental instability 12-22 actually.
I gave up for a year, then decided to try again because I saw someone with a similar diagnosis turn their life around. Tried what felt like the thousandth med combination and therapy twice a week but this time it worked. I was in disbelief to feel myself going through these changes. I am now mentally stable for more than a year, in college, obtained my license, I go in places, I had a child whom I adore and I am enjoying life. I look forward to new experiences and challenges. Keep trying. Ignore them wanting to write you off just because your issues are not an easy solve. Lots are used to simpler cases, and ones that are severe intimidate them. Change psychiatrist if you must, but keep going.
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u/CakeAccording8112 1d ago
I went for years thinking I would never get better than I was. A med change this year improved things dramatically. I’ve learned there is always hope if you don’t give up. Wishing you the best.
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u/interested-parties1 1d ago
Are you taking lithium? It has been a godsend for me
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u/Few_Success_5216 19h ago
No, I've never tried lithium. Not sure why, but it's never been suggested to me.
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u/possumfinger63 16h ago
I also will say that had been amazing for me too, and I have a similar story to you
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u/twinklingstar_00 Bipolar 1h ago
As a retired med student lemme tell u that litum is the 1st option when it comes to bipolar
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u/bohemianskink 1d ago
Just hang in there pal. Whatever it takes to get you through the day. Just keep on fighting. We have been chosen as warriors that have to fight this dragon and ultimately defeat it in the end. Just keep reducing your time frame till you can cope and manage
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u/dispqtch 1d ago
i feel you about them not being unable to medicate you properly so they just use all the sedatives they can, i was on 300mg of some combinations at 11 because i wasn’t diagnosed with anything, needed to be hospitalised but didn’t fit the age criteria.
id get a pharmacist review, they know more than the psychiatrist when it comes to medications interacting. the antipsychotics may interact with any possible inhibitors you’re taking increasing symptoms; and non-psychiatric medication could be lowering the amount of blood and medication absorbed.
in my opinion, it doesn’t make sense for them to keep you so heavily sedated, yet living day to day. mental wards are not just for people undergoing crisis, for my first stay; my medication wasn’t working and i needed it all changed, so i stayed on an observation ward. your symptoms are recorded, including weekly blood tests, glucose, and general rounds. if you have medication making you drowsy they will lock your bedroom so you cannot nap and include you in physical excerises aswell
additionally, although this is outside psychiatry i believe you have to see a trauma specialist, you obviously know how bpd and did are formed - and sometimes medication will only work with therapy (not blaming you)
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u/dispqtch 1d ago
also these medications have got to be causing kidney damage, do the schizophrenic specific medications decrease hallucinations? because they don’t always cure it like that, they can decrease paranoia and delusions but it’s not like they will 100% prevent hallucinations. not only that but ur hallucinations and how they form is based on ur setting, socially and culturally
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u/Stormdrain11 1d ago
I think about this a lot. Assuming the mental stress has taken years off my life, and assuming the cocktail of medications will take years off my life, it feels so unfair that it has to be balanced with quality of life.
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u/dispqtch 1d ago
it does frustrate me that the most ‘effective’ medication for bipolar has adverse side effects, and if slightly overdosed causes organ failure and coma. i feel like they could’ve made some more by nkw
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u/Stormdrain11 1d ago
Unrelated but the book The Bipolar Child has fantastic information about early childhood symptoms even going back to being in utero, differentiating comorbid symptoms, and the reluctance of professionals to diagnose at a young age.
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u/dispqtch 1d ago
i definitely mentioned bipolar when i was at my worse at 11, but they were completely reluctant to even go further after i addressed symptoms. despite this all my ocd meds were also bipolar, especially quetiapine, and in heavy doses at that. after that because i temporarily transitioned to a guy they’d cite me being transgender as a factor causing stress so they wouldnt even diagnose things like adhd, and would use my period and pms as an excuse
since i was 11-12 when everything first presented i was unable to be admitted to any wards, i can’t imagine the help i would’ve gotten if i had the opportunity, and now that my bipolar is fully formed, although i’m 16 and the max age in adolescents is 16 since i’m turning 17 i’m not allowed, and adults have flat out refused despite mania being evident because of ‘security concerns’ leaving my only options to private hospitals that would need a referral which seems… not logical for somebody with bipolar
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u/Few_Success_5216 19h ago
Yes I ALWAYS ask the pharmacist about my meds! Including over the counter, too. I have physical health issues, too. I ask a lot of questions. It's really helpful. I am keeping myself up until my bedtime which is now midnight. I'm known to stay up until morning smh I find community and exercise help too. but thank you!!
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u/dispqtch 13h ago
you can organise a proper review of all medication if you ever feel it’s needed, there are pharmacists that do these reviews for their job , and are specialised to do it for people who have multiple health conditions.
it was a free public service so that’s why i did it personally, we also went back on past medications and your reactions
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u/Premiers2021 1d ago
Hang in there friend, they’re always working on new medications and treatments. Hope things improve for you.
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u/Few_Success_5216 19h ago
Thank you and that's right. Now they have injections that last six months lol that one really surprised me 🤣
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u/Odd-Increase1260 1d ago
I feel your pain so much. All I can say is you're braver than you think. This "invisible" disease just takes life away from you - I hope and pray you find one glimmer of light and hold on tight to that. Sending you so much love.
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u/StandardNo5238 Misdiagnosed 1d ago
I am terribly sorry you are going through this. I don’t mean to sound insensitive, but is your therapist a trauma informed one? I went through many, until I found a dedicated one and once I started healing the past trauma was I able to live again. I also found so much of trauma is store in the body and even therapy only gets you so far. Somatic experiencing and other modalities have helped significantly.
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u/Few_Success_5216 1d ago
Idk about trauma therapist but I've been in therapy consistently for about three years. It's helped a lot but it hasn't changed my brain chemistry.
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u/StandardNo5238 Misdiagnosed 23h ago
A therapist specialized in trauma can make a big difference. I was in a similar scenario as you, however as a single mom, I had to do everything I could to feel better, or risk losing my kids, as I wasn’t functioning. I did meds, psych hospitals, intensive outpatient (DBT was helpful) and years of therapy. It wasnt until I started to resolve the trauma was I able to reduce (now eliminate meds). The trauma route is often more difficult, but the quality of life I have now is significantly better than it was, but it was and will continue to be difficult. I had to remove toxic friend and even family (my own mother). I have to really adhere to sleep schedules, diet, exercise, breath work, very low stress job, etc- may sound a bit woo-woo, but when u reach bottom and there is no where else to go, you start trying other modalities that aren’t typically ‘prescribed’ by traditional medicine, but have been helping others for thousands of years. You are not flawed, the modern system is.
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u/poopymama34 1d ago
Hi, of course i'm not trying to diagnose you and pls take my words with a grain of salt because i'm not a medical professional but medication being completely ineffective with a bipolar 1 diagnosis might suggest a neurological issue, like a head injury, a defect or a non mental disorder that also affects the brain. idk if you've ever had a brain mri or any further inspection in that topic but i suggest u do further research. I'm not saying you don't have bipolar, but if it did hypothetically turn out it was a neurological issue you could get more accurate care :) I have brain damage from severe trauma that causes a chronic chemical imbalance which also often makes medication ineffective for me, i'm still definitely bipolar though
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u/Few_Success_5216 19h ago
Yes my previous psychiatrist said I struggle with memory from bipolar and PTSD. I definitely think the trauma has affected me the most. Thank you for suggesting this. I did hit my head on concrete one time as a child. I wonder about that if I got issues from it.
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u/JeannaJo 1d ago edited 1d ago
I think a psychiatrist giving either 1) too much false hope/ positivity is bad, and 2) saying there’s no hope EXCEPT xy or z is equally as bad. I don’t know the whole story and could be wrong, but if that’s the case this is a terrible approach by a medical professional and I would get a second opinion.
Is your therapist also seeping into the well this is just your life and it’s bleak narrative? Is it psychotherapy? Are you given homework and tools to counteract your proclivities? Is this a psychotherapist or a “you talk and I provide vague feedback?”. If it’s not a goal-oriented, restructuring CBT or DBT type therapy, would highly recommend seeking a new therapy as well.
I would also look into TMS treatment- strengthens and repairs connections in the brain that are worn down by trauma. You’ll still need to stay on bipolar meds, but it’s proven to help with PTSD and other non-genetically related mental illnesses.
Someone else also mentioned a neurologist- wouldn’t hurt.
Don’t give up, seek new outlets. My heart goes out to you.
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u/Few_Success_5216 19h ago
My therapist thinks my memory issues is just my DID and I switch personalities very fast especially when stressed. It's trauma. She's the first to say that and has helped me understand my trauma a lot.
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u/rebevance 21h ago
I am so sorry you are going through all of this. I think the fact that you are not giving up and still seeking better treatment is really, REALLY something to be proud of. Don't give up. Idk enough about medication and am not a professional so wouldn't comment about medication, but pharmaceutical cos are always researching new medications. Keep working with your therapist and hang in there. ❤️❤️❤️❤️
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u/bluejellybean93 16h ago
Your psychiatrist could have tried talking to you in a way that was more hope inducing. For someone that prescribes meds for patients with MH, one would think that a psychiatrist wouldn't say something so scary and triggering like what he said to you.
i truly think that our progress with trying to improve our mental health is not linear. We might fall deep down into a hole for days weeks months. And sometimes it's a hole we can climb out of momentarily. Bipolar is fucked. Its true Bipolar can never be erased from us, but i doubt that nothing can be improved with trauma counselling or with specialized therapy. If your psychiatrist isn't trained in those things, how would they even know that counselling and therapy combined with medication, wouldn't help you. They aren't trained or educated enough to know. Your psychiatrist made a blanket statement. They know about meds. But about you and your mental health improving? There is no way they can 100% predict the future for you. I promise.
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u/Few_Success_5216 15h ago
I agree, I left that psychiatrist because he was too booked out and I need monthly appointments. Blessing in disguise. My nurse practitioner is WAY better than him. She changed my meds around and increased my mood stabilizer to help my depression. It's a lil better but for me that's a lot lol but she speaks life into me and wants me to have a good life. In a way I agree with my last psychiatrist, my bipolar is severe and I have multiple serious mental disorders. But even with that, telling someone they can't have a good life is hurtful and very insensitive especially for a doctor. Even if a good life for me was just coloring and enjoying game shows, its something that makes me happy. Life doesn't need to be exciting to be happy.
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u/Honest-Plane9987 1d ago
Here in my country you can t even get a disability pension if you don’t work for 1 month. It’s stupid
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u/MaythefourthbewithC 1d ago
Sending you love. I hate that people think it’s okay to take someone’s hope away for getting better. I had people give up on me and I came out on the other side. Things can change.
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u/strwbryangel444 1d ago
sending you love & the biggest hug. please don’t forget the supportive community you have here 🩷
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1d ago
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u/regretablecunt Bipolar 1d ago
I’m also very similar in diagnosis. I have schizoeffective bipolar 1. I just recently left my husband (he was so controlling and abusive it kept me “under control” for years- looking back I was very much not under control) had the worst manic episode with psychosis I’ve had in years and ended up in a situation where I had to tell myself and actually believe
“My mental health is not my fault, but it is my responsibility”
I went to the hospital, was finally honest for once, got back on meds and now every day I repeat mantras to myself (not in like a disassociated way lmao) I remind myself of everything I lose when I don’t take care of my illness.
I remember how pretty the birds sound, I remember how much I love the smell of spring, I remember how calming a rain storm is. I can’t enjoy those things honestly with crack pot “coping skills” and hoping I don’t fall into the pit.
I found there’s so much help around and I’m not a piece of shit for needing help and taking it.
You’re worthy of help. Your voice is worthy, your needs are worthy, you yourself are worthy.
People don’t know what it’s like to have these mood shifts that can exhaust you for weeks, to hallucinate every time you try and sleep, to have the voice scream so loud in your head that death is the only move forward. They’ve never screamed about God punishing you when you’ve been an atheist your whole life.
But the people that don’t get it- so many really care and sympathize. There’s so much access to supporting voices with the internet if real life is a harder option.
I’m taking help and I’m starting over (again) finding the proper way to take care of my mental illness. I know you can too.
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u/Saminthea 1d ago
My Bipolar 1 isn't as severe as yours, but I do have bipolar with occasional delusions and paranoia. One of the biggest helps for me was identifying my delusion triggers and how delusions felt in my body. I'm also currently in DBT for my Bipolar and looking to get into EMDR for my PTSD.
In my experience, things can only go up. There's always new meds being developed, more medication combinations to try, and therapies to make up the difference when medication can't do its job.
I hope you find better things for a more tenable future! Sending love and hope 💛
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u/viiiigiclout 1d ago
Keep on chugging along, my grandma with severe bipolar didn’t find a medication that helped for 40-50 years and then just last year she found the right one and is a completely different person. Other than that just gotta stay focused on taking care of yourself the best you can, it’ll probably always be a struggle but it is what it is. I know how fucking annoying and repetitive this sounds, but yogas helped me quite a bit.
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u/deliciouzzzzzzz 1d ago
I'm bipolar type one with paranoia and delusions too, and I've given in to the once a month antipsychotic shot. So far it's working....
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u/lovedthatforme 23h ago
sending you so much love. remember you are never alone. we don’t know you but we all care so deeply for you.
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u/lilstarwatcher 22h ago
God I wish I could hug you because isn‘t it unfair that the trauma wasn’t your fault but the healing is your responsibility? Yeah, I know how that feels.. Try your best, do it for yourself as you deserve it, don‘t be afraid to call for help. I hope you find a way or a medication that can ease your pain and symptoms. Some people are lucky to find smth really fast and others need to search longer but can still find something that finally helps. You can be really proud of yourself for not giving up and doing your best!
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u/possumfinger63 16h ago
I see you. I lived this way but when I was younger. Did, bpd, paranoia psychosis, all of it. Then new research and drugs came out and now I’m still on 5 meds but I’m functional and I live in my own and have a real life. It isn’t over. The meds don’t work now, but so much research is happening and there are going to be new meds and research soon. Keep hope
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u/KaleidoscopeAgile330 14h ago
That all sounds like the worst. I think you are incredibly brave to keep going. The world is a cruel place and people lucky enough not to experience serious mental disorder have absolutely no idea how hellish it can be. I get what you mean, I think, about added trauma from others. No wonder people are so terrified still by ‘mental illness’ for lots of reasons….ignorant stigma, lack of the right sort of help, horrendous medications, of course I could go on!!! Anyone who bears it deserves admiration imho.
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u/SnooMaps5962 13h ago
BPD and bipolar disorder are often misdiagnosed between each other. Bipolar usually they just flood you with meds, but BPD usually are given talk therapy. If you have a dual diagnosis you should treat both as individual problems.
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u/Puzzleheaded-Ice9737 12h ago
You're up all night with those injections? Salute
I used to take injections for schizo effective and they used to knock me out
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u/boesra 11h ago
Hey I have nearly the same problem bipolar 1 rapid cycle and now perimenopause disability I need caffeine and nicotine just to live so tired and fed up my people around are also gaslighting me like be thankful you don’t have children be thankful you don t have to work I always still am thankful but hard we need more rearch about this disease thank you for Charing you story
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u/Messed_Up43 Misdiagnosed 10h ago
Hey, you're doing amazing. I know it's probably been said a hundred times, but I understand where you're coming from. Without going into too much depth I'm actually pretty similar. Tell me if you need to talk. Everyone here has your back no matter what you need. And let's be real, you're doing incredible. You're not weak, you're a survivor. I'm proud of you, everyone else here is too. Reach out to whoever you need to, to realise that you're an incredible human being. The fact that you can talk about this and help build awareness for yourself and everyone else in your situation makes you a hero already.
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u/AllForMeCats 6h ago
Have you done the medication genetic testing? I had it done years ago, and while it wasn’t a perfect solution, it did help with my treatment.
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u/DepartureMountain924 3h ago
Hey man, I got diagnosed with bipolar almost three years ago now, I’ve been through one manic episode that lasted for 6 months, as well as a depressive episode that lasted for a almost a year. What I’ve learned is that you will circulate through a mixture of prescriptions until you feel normal again, the doses will decrease. You will feel better I promise. Try a different psychiatrist if you’re not comfortable with your current, I kept on trying different psychiatrists and medications until I felt better. Also please find a hobby/sport, anything to keep u out of the house. Been stable for 2 years now. Stay away from drugs and hard liquor. Godspeed my friend
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