Family and Caregiver Schizophrenia Discussion Forum

Do you tell them...(Doctors)....or, they tell you?

After 20 years receiving mental health services (counseling & medication)…I relate to everything Schizophrenia.

I just found out 2 days ago after researching ‘dopamine’ online.

I am currently experiencing a horrible physical health crisis…and, dopamine levels was part of the conversation.

Reading about dopamine a lot of the articles related to Schizophrenia.

When I read about Schizophrenia…my life makes all the sense. I am 40 years old.

I never even looked into Schizophrenia because, you know…all I know about it is…Hollywood Schizophrenia.

I am not Hollywood Schizophrenia…which is often portrayed as someone in a skid row…type lifestyle.

Let’s just say…I clean up well when I absolutely have to…but, at home and in private things could not be so different.

I just saw a new psychiatrist last week. We bumped heads. Doctor was mostly focus on my mental health history from long time ago and especially my childhood.

Like I said, I am 40. I was never diagnosed with any mental health disorders as a child because I was a neglected child. I grew up very poor so there was no money for doctors.

Medicines…? What is that!!!
I was lucky to get a single Hall lozenge from my parents when I had the full blown flu!

I got by as a child hustling.

I took a job at 13 bussing tables which took care of my food (my parents did not buy much food…I often went hungry), school clothes, etc. I even had to pay for school things on my own…such as …Field trips. Whatever it took to ‘look normal’ in front of my peers. I was very ashamed of my home life.

In class I also got by hustling. I studied what I could and passed those classes. On my weak subjects, I cheated on tests, plagiarized my papers, and I was the Queen of Guessing on multiple question tests. Just got lucky and managed to get good scores on those tests.

I remember… I totally blanked out on my ACT. Question…after question…and, I did not know the answer. I just started bubbling in the answer sheet. When my score came back as a 25…I nearly fainted!

Some teachers did notice my struggle of being ‘slower’ than the rest of the normal kids and were kind to me. I didn’t get in trouble if I turned in assignment lates, offered separate extra credit and sometimes they talked to me when I did not score good grades. I was allowed to re-take the same test…which lowered my test anxiety significantly…and, I would pass my tests these way.

Hustling is how these Schizophrenia symptoms were masked.

I just thought…life is not easy! When you come from a difficult childhood…many things are your normal.

I have never taken a drink, smoke or done drugs…so, I have never been exposed to social services serving at risk people. I think this type of counseling focuses on intervention and rehabilitation service would have better served someone like me. Basic life coping skills. Relationships. Employment.

I went to my first psychiatrist at age 20 when I got health insurance at school. This has been my care.

So, now! I take 2 medicines. 1 for 20 years and the other 6 years.

The medicine of 20 years she took away! I think because I was not diagnosed as a child.

She was very firm and asked me 3 times.
I told her twice I had symptoms. Then she asked me the third time…and, I said no. My parents never took me to any doctor.

What part of child abuse and child neglect did this doctor did not understand???

I mean…at 20 and in college…you are still a child…eh?? ‘Young adult’ I knew something was always wrong.

I took the initiative to get out of my childhood hell. Seek psychiatric help. Attend college.

I have always been the child and parent. Grew up fast in this way.

I have never blamed my parents for anything. Or, used my childhood as an excuse for my failures. I left and never looked back. I have not talked to them for over 20 years.

It is so wrong to blame children for their own child abuse or neglect.

I feel she did this me and it has made me so upset and I am still left shaken.

She scolded me for not taking my medicine on the regular even though I told her the …breaks…were because I did not access to health insurance. I could not afford the visits or medication. This is a 20 year HISTORY.

I think this is why she took it away. For not taking it regularly in 20 years!

If these psychiatrists (the ones who can prescribed these medicines) did not charge $300 an hour…then maybe we can afford to go when we are low on money.

You know! They charge my insurance $325. The insurance pays them $60. My co-pay is $20. So, all they get is $80 an hour! How is this $300 an hour rate for uninsured patients even fair? Especially, the ones that are already on medication!

My question is…now I want to tell her how much I relate to Schizophrenia.

Do I trust her to listen to me…or, find another psychiatrist?

I am on a ‘System’ and if I see another Psychiatrist she will know!

She will probably think I am leaving her because of how we bumped heads over this medicine. I just want another doctor to give it to me.

At this point this is the least of my worries.

I am more focused on talking to someone about Schizophrenia, learning more about it…and, where to go next.

Did you get diagnosed or did you bring it up to your doctor?

Schizophrenia sounds so scary (thanks, Hollywood!)…and, serious…but, this is what I have. I am scare to bring it up.

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The Doc is a fucking idiot, go to another… Docs cant diagnose shit on this they diagnose when they see what med works…

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Don’t worry about hurting the feelings of the first doctor. Do what you think is best for your mental and physical health.

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Thank you so much for sharing, much of your story I can relate to, as for your last question, it’s a combination of what you say to the doctor and what their expertise says to them about your condition. It is a collaboration that depends as much on what you can honestly and bravely disclose with your doctor and what their knowledge brings to the table on how best to treat you. Communication is key. If one doctor is not right for you, you deserve one that is. You already exhibit much bravery even in the face of fear. I admire you.

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Thanks for the support.

Someone from patients advocate services called me to follow up on my visit.

I took this opportunity to request another psychiatrist.

I asked to ‘start over.’

I have an appointment in a few days.

I will talk to this doctor about Schizophrenia and how I can get tested.

Does anyone want to share your first Schizophrenia appointment?

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@Clarissa this is the caregivers forum, so you might not get many responses from the diagnosed perspective. I am both a caregiver and diagnosed with SZA (Schizoaffective Disorder) so I follow this forum. There is a separate diagnosed forum.

Rather than repeat my disastrous first contact with a psychiatrist, I’ll link to another forum post. My experience with Psychiatrists is many are very poor listeners and not particularly patient focused. If you want to talk about Schizophrenia rather than get medications prescribed, some psychologists are skilled at this, but you need to find one with experience. That’s somewhat hard to find.

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I don’t have schizophrenia but my youngest son does, he is 35 now. I recall every appointment because I went with him. He was diagnosed with Disorganized Schizophrenia which is a less common version of the illness and it makes speaking coherent sentences almost impossible, they come out like a “word salad” all mixed up.

Our first real office visit after the initial hospitalizations was basically the doctor talking to me and attempting to talk with my son. He didn’t have a lot of luck with my son, what little he said made no sense. So we left with a prescription. It took about 2 years and trials of about 6 or more medications as well as about 3 or 4 doctor changes before we got the right doctor with the right prescription and real solid sustained improvements began. Not everybody’s path goes like that, some are easier and some are harder.

Through it all, regardless of circumstances you have to stay focused on your journey to better health. In addition to the doctors and the medications, it doesn’t hurt to uplift the health factors in other areas of your life as added support. Healthy nutrient dense food, lots of water. regular exercise and checkups with your family doctor, getting consistent restful sleep, allowing for peaceful and reflective quiet time as well as quality time with someone you love or have a good friendship with.

Mental health I have found is not made better solely with the medication and/ or therapy (although it’s a huge part of it), the addition of consistent self care in other areas of your life the rest of the time is a key component. It’s a total package. All parts work together. I wish you all the best.

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@Clarissa in reading your initial post, I have a few ideas. First, there’s a possibility that your psychiatrist may have discontinued a medication you’d taken for 20 years simply because it is old and outdated and may have detrimental effects on your dopamine levels which you are concerned about. Newer medications are more targeted and act on multiple different receptors in concert. I understand your apprehension in changing a long term medication that was working for you. I’ve switched medications four times over 30 years and each time I was apprehensive.

I found comfort in the ‘old school’ typical medications because you could feel them working and you felt medicated. The newer stuff makes me feel less medicated, so it took me a while to trust them. I had a bad experience with my first atypical and after 6 months, I asked to be switched back to my original medication. Most psychiatrists will often reluctantly try what you wish, because of the implication that you might go off a medication altogether.

When starting with a new psychiatrist, I find it helpful to project an air of confidence and competence. Emphasize how long you’ve managed your illness without hospitalization and recite your history without getting into too much detail about the past if you can. Avoid words like hustle, as it has some unfavorable street connotations and might make the doctor think you are try to hustle him or her. Use words like coping mechanisms and adaptations. These are words that describe the same behaviors in a way the doctor will understand. It helps also to project a calm but consistent attitude when you disagree.

What specifically are you concerned about as far as dopamine levels? Are you experiencing symptoms like Parkinsonism like tremors etc. There’s also what I consider a lot of ill advised talk of dopamine fasting in contexts on the fridges of mental health where people limit dopamine level by effectively leading a short-term less stimulus driven life by behavioral (non medical) changes like turning off cellphones etc.

There are some people who ascribe to somewhat fringe studies that are geared away from antipsychotics effects of dopamine and other receptors toward supplements and nutrition. You need to be very careful when following such advice, since, while it may work for some people, it not a mainstream option and has less science behind it. In effect you become an anecdotal scientific study of one when you follow them and need exceptional medical support. Since you say you have trouble with doctors in general, I think you are safer with a more mainstream approach.

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Thank you, All!

I had my doctor’s visit.

It all went better than I can ever imagine.

I feel my doctor wants to help me when I said…I think I have Schizophrenia.

I have new meds. (2) We will talk about how I feel on them at our next appointment which we agreed on …in 4 weeks.

My doctor also wants to order brain scans.

I am kinda glad it was the doctor who brought this up.

I am curious to know more about my brain.

I hope these pills work. I am not one that likes to try a bunch of things.

This is why I freaked out when the other doctor took away my medicines I have taken for years without any negative side effects.

I just really hope…these 2 new meds for Schizophrenia do not make me gain weight. This will mean…I can’t no longer take them.

Once, I took a psych drug that made me gain 40 pounds in about 3-4 months which made me medically obese. I cannot have this. Obesity involves deadly weight issues.

I stay hopeful.

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