Sufferer Help with how to talk to my doctor about my concerns with misdiagnosed and finding the right treatment.

[stella1210]

Hi I'm trying to find help from people that have gone through complex trauma and
has found the right methods to heal. 9 yrs ago I was diagnosed with bipolar1 at the hospitaI in the emergency room and put on antipsychotics. I have been on them since. I'm suffering more now than ever before from the damage of antipsychotic side effects an no relief from the pain. I dont know where to turn. My doctors will not listen and look at my root cause childhood sexual abuse, abandoned and married to a narcissist for 30yrs. I'm looking for real healing like regulating my nervous system. No major sedative or dopamine blockers.

 

[Riley Jones]

Hello, I'm glad you reached out here. I'm deeply sorry to hear about the pain you are experiencing. Finding the right methods to heal from complex trauma can indeed be a challenging journey. It sounds like you've been through a lot, and it's important that you feel heard and supported.

On myptsd.com, you can connect with others who have gone through similar experiences and have found ways to heal. Many members share their stories, insights, and coping strategies that have helped them along the way.

I would encourage you to explore the forums on myptsd.com dedicated to complex trauma and its effects on mental health. You may find valuable information and personal experiences that resonate with you. It's also important to consider seeking professional help from a trauma-informed therapist who can support you in addressing your childhood trauma and current challenges.

Remember, you are not alone in this journey. Many have found healing and relief from their symptoms, and with the right support and resources, you can too. Take care of yourself and reach out for help when you need it.

 

[arfie]

hello stella. welcome to the forum. sorry for what brings you here, but glad you are here.

My doctors will not listen and look at my root cause

be it a doctor or a peer, i interpret this as, "sorry, charlie. i can't help." it's not my job to educate the medical community. mine is to buy or not to buy. i do not owe them an explanation for my choice. i simply make my choice and move on, with or without the promoter in question.

 

[Rose White]

it's not my job to educate the medical community. mine is to buy or not to buy.

Good point! You illustrate the humane and civilized side of the market system of healthcare! I imagine it would be harder with socialized medicine to feel a sense of agency surrounding diagnoses.

 

[MrMoonlight]

If it were me I would get a thorough assessment by a new psychiatrist. If your meds aren't working maybe they can adjust them specially after 9 years. Sorry you are suffering...I got on lithium for my bipolar 1 and has been working these 2 years.

 

[Muttly]

Is it possible for you to seek a different doctor or find a therapist who has experience in trauma?

 

[Weemie]

9 yrs ago I was diagnosed with bipolar1 at the hospitaI in the emergency room and put on antipsychotics. I have been on them since

Is there a reason why you can't just stop taking them? I mean, I don't advocate for this, because tbqh we haven't even proven that there are no environmental factors for bipolar. Just because you have trauma doesn't mean you also don't have bipolar. Most of these serious mental illnesses are shown to have a combination of heritable and environmental factors anyway.

Still, I am thankful daily I'm too oppositional to do things I don't want to do for any amount of time let alone nine years (and that doctors recognized the difference between PTSD+Psychosis and schizoid or actual schizophrenia, so I am less likely to be put in positions where I am forced against my will.)

The trouble with bipolar is that it's neurodegenerative, meaning if you stop the treatment you can cause irreversible brain damage making each episode worse and worse. If your current doctor won't entertain a second opinion (which it's unlikely they will as admitting they are wrong is not often in a doctor's wheelhouse) then you'll have to find one who will or weigh the risks for yourself.

Blow up your life with another manic episode (who knows if this is the one that makes your spouse divorce you or children go no contact or you lose your job or destroy your house, all shit I've personally seen) or continue on antipsychotics that increase your risk for permanent extrapyramidal side effects like tardive dyskinesia.

Personally I refused to take antipsychotics, but my condition isn't degenerative. I generally have had the same issues for years and years in a stable way. (I also have more hallucinations with insight than delusions.) Bipolar will get worse off your meds. Sometimes to the point that the meds you were on won't be effective in the future.

 

[Weemie]

Good point! You illustrate the humane and civilized side of the market system of healthcare! I imagine it would be harder with socialized medicine to feel a sense of agency surrounding diagnoses.

It's even more challenging when

Spoiler: Off topic rant

during that period of March 2023 to February 2024 when we legalized MAID for mental illness in Canada (we have an exemption now set until 2027 because finally people woke up after human rights groups blasted our incoming laws as the most permissive since 1930s Berlin and they were like ope we did an oopsie) many mentally ill people were encouraged by their actual doctors to consider MAID before they had even brought up being suicidal.

How are you supposed to maintain humanity and integrity when doctors are going "please consider the following: die" instead of offering actual medical care. It makes me so f*cking angry that the conservatives in 2010 were all like "if we have socialism we will have death panels" and now Canada is literally trying to make death panels lmao.

No! The Nazis don't get to be right.

 

[Sideways]

Is there a reason why you can't just stop taking them?

Yeah - the withdrawals of stopping cold turkey are dangerous. Titrating off means getting a doctor to prescribe smaller and smaller doses until you’re finally off them.

 

[Weemie]

Yeah - the withdrawals of stopping cold turkey are dangerous.

The risk factors of doing so are something I mentioned in my post. There are plenty of self-stop titration schedules you can use. For antipsychotics, the withdrawals are not life-threatening on their own, but like I said, it obviously isn't risk-free. The risk isn't of imminent harm from a withdrawal syndrome, but rather the harms that come from having untreated bipolar disorder.

In fact, a majority of doctors for decades didn't even believe there were withdrawal symptoms for antipsychotics, instead attributing it to a return of the patient's condition following cessation. In the UK, this is still the case. Many doctors still don't adequately inform their patients about withdrawal effects from antipsychotics (primarily because most psychiatrists do not advise stopping antipsychotics, even when it cannot be adequately confirmed that the patient meets the threshold to be treated by them.)

Unless this person can either convince their doctor to re-test them and stop the process, or find a brand new doctor who will then be informed that they have a degenerative psychotic condition that will make them most likely unwilling to facilitate cessation, it is completely unlikely that they'll be offered any assistance. When they have already clearly been trying to ask for a second opinion and been given zero of it.

There is study after study showing the dangers of antipsychotics, which vastly outweigh any withdrawal syndrome by a long-shot including literally shortening patient's lives, reducing their brain volume, which results in EPSE and more. Withdrawal from these drugs doesn't cause anywhere near that level of harm. No one on this forum has the ability to diagnose anyone, so the only advice we can offer is "listen to your doctor", "find a new doctor," or "do what you want."

At the end of the day, patients have the right to control their own treatment. Is it a great idea, no. But there are options. My question was intended to express that dichotomy, not encourage someone to go off their meds, as the rest of my post explicitly states.

 

[Sideways]

I’m not sure why I got the history lesson, and I’m flat out not up for a debate on the risk/benefits of antipsychotics. The fact is a lot of folks depend on them, and currently the OP is on them.

I’ve come off a number of different antipsychotics over the years, and it can be incredibly brutal. Stopping cold turkey might not kill you, but hells bells it can come damn close!

We don’t seem to be disagreeing. But…thanks for the additional information…?

it is completely unlikely that they'll be offered any assistance. When they have already clearly been trying to ask for a second opinion and been given zero of it.

So, I’m not seeing this based on what info we have.

I hear frustration from you, @stella1210 . But it sounds a lot like there’s been a communication break down with your treatment provider. It may be worth getting some help with that - is there any family or friends you trust that you could have accompany you to an appointment? Would writing down things in advance be helpful?

It’s usually the case that primary treatment providers and emergency doctors are often loath to explore underlying causes of our mental health issues. And they very definitely they aren’t equipped to explore our experiences of child abuse with us. But that doesn’t mean your experiences are irrelevant to your present health. If you don’t have a treatment provider who is trained in how to work through that with you, then it might be worth asking your GP to a referral to a therapist.

If your GP is able to refer you to a psychiatrist, they will be better placed to review your diagnosis, treatment plan and medication with you. Your GP would be working outside their specialty trying to do that with you themselves, and relying on a diagnosis from an emergency presentation is, often, inadequate and not representative of the full picture.

 

[Friday]

New doctor, or reeeeeally good mental hospital, presenting as “I think I have been misdiagnosed.”

They’ll peel you off your meds & do a new assessment.