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Trying this whole thing for the fourth time. What are some strategies for communicating with my doctor and helping to get me the type of help I need?

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Posted (edited)

I have another thread posted if you would like a detailed review of my history, but in short, I've been to a shit ton of psychiatrists, and one major therapist (+ DBT for a brief period of time which I had accountability issues with on my part). I am very jaded by being put on every medication in the world, nothing helping, and therapy teaching me all about why all my problems exist, but never getting me in touch with them or helping me cope. Still, nobody has any idea what's really wrong with me, but there is clearly something very wrong that has gone from "kind of interfering with my life" to "at least somewhat likely to become fatal" in a few years' time.

So, I ask you, as I am about to get gutted for 260 more dollars -- do you, who have been through the psychiatric & therapy mill and have at least been mostly successful (enough to say you enjoy living more than 30% of the time), have any advice for me? I am going to ask a bunch of random questions now, but this is just to get your brain going and you don't need to answer them all specifically if you feel they are not relevant. I think I have a lot of problems communicating, so I thought I'd ask some other people who might be better at communicating their feelings above the emotional competency of a  3-year-old. I'm just trying to get a discussion going, and since I don't know what to do the answer is probably not going to be in this list of questions. ANYWAY...

Do you give symptoms as they are right now? Do you give a whole history of your life? Do you specifically just list out traumas? Do you tell them about your past history with other doctors and diagnoses? Is there anything I can write, plan, or bring in advance that would really help find me a diagnosis, or more importantly the result of that, a treatment plan that works? For example, I've been tracking my moods for 2 months, and I've also written several essays (one was at the time I made the appointment, when I was very depressed, to try and capture exactly how I was feeling at the time). If you have thought about your diagnosis, does it help to tell them what you believe your diagnosis is, or does that anchor them? I have been heavy into psychology literature for a few years now, so while I'm certainly no doctor I'd like to think I'm a little more versed and my opinion might matter since I can address my symptoms methodically. The other problem is, I feel like I have different problems all the time. Like I'm anxious when I'm in public. I get depressed when I'm alone. But also, I have huge ups, and relationships where I'm practically manic. Almost like I have constantly shifting mental issues, like whatever state I'm in is always its own breed of crazy. So it's hard to even pinpoint when something works or doesn't work, because my moods shift so often anyway...I guess I'm rambling now but you see why this is so much trouble...In order to list all this out, I would basically write a whole essay, and my whole hour session would be spent reading it, which is really stupid and feels like a huge waste of money, when I bet there's a way to tell her all the same information in a much shorter period of time.

If it helps you to help me, this doctor is a (very expensive, and I believe relatively talented) psychopharmacologist. She is better than pretty much any therapist I've known, so that's why this is under therapy and not a board related to medication. I have seen her once before, and she had some good ideas, but I abandoned the whole thing because again, accountability issues. She is the only doctor, psychiatrists and therapists alike, who I've met so far who I feel might actually be competent enough to help me, so I want to give it all I've got and put her surely very intelligent brain to use.

Thank you very much if you've read this whole thing, and thank you in advance for any advice you might have.

Edited by censer

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Posted (edited)
  • Current feelings/symptoms/behaviors. Identify the predominant ones
    • Euphoria - ID if situational/triggered or not
    • Depression - ID if situational/triggered or not
    • Delusions/hallucinations/derealizations - ID if drug triggered or not.
  • Historical feelings/symptoms
    • Mood tracker data would be helpful. Essays may be a bit much to start with.
  • Drugs you are current taking or have taken in the past. Prescribed and illicit
    • List of prescribed drugs 
      • How long you took each one
      • Dose if you have the data.
      • Effect on you (no effect, euphoria, anger, hallucinations, irritability, worked but stopped it for side effects, etc?)
  • Family history to help determine if it's nature, nurture or both
    • Relatives with mental illness
    • The stuff you mentioned in your other post.

Be honest, which also includes not lying by exclusion. At the end of the day, you are giving your history, not steering her to a conclusion. That is up to her to concatenate everything you've said to come to her diagnosis.

I can expand on my rationale behind the bulletpoints above if you want.

But really, have her drive it and just be prepared with answers to what the bulletpoints say. If you sit down and go on a spheel, not letting her get in a word edgewise, it really will be a waste of money.

GL dude. You sound like me except for the fight starting.

 

Edited by argh
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I would bring a bullet point list of your history, noting highs and lows and possible causes. Bring your mood tracking data to offer at the end, I wouldn't spend session time on it specifically.

Bring a list of any meds you've tried, their effects (helped or not, what side effects), the max dose, how long you took it, and with what else (or whatever of that information you can remember).

Review your family history of mental illness. Bring notes on that if there's much you might not remember.

I would feel comfortable saying "I'm know you're the doctor, but I've done a lot of reading and I think XX fits well with the symptoms I've noticed." Be willing to follow her lead, but honestly that's a line for me - my doctors have to treat me like an intelligent, educated individual and not feel threatened. That's not to say I refuse treatment that doesn't match my self-diagnosis, but I will ask questions about the method and treatment and reasoning. They've gotta be okay with that.

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Posted (edited)

I have to ask...is writing down my medications and stuff something I was supposed to be doing this whole time? Cause they always ask...and I honestly don't know. I think part of my thing is I have some really bad issues with memory. I guess I was just stupid for never writing them down, but I guess that's what most people do? I mean like, if she says the name of a medication I might remember it, but I don't remember why I stopped taking each one other than they were all shit...lol

I don't know why to me, it just seems really weird that people keep track of that. I have no idea why...maybe people just have really good memories and can remember all that? Do you keep a notebook logged over all the years or something? I guess it probably would be a good idea to start doing that...

Edited by censer

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1 minute ago, censer said:

I have to ask...is writing down my medications and stuff something I was supposed to be doing this whole time? Cause they always ask...and I honestly don't know. I think part of my thing is I have some really bad issues with memory. I guess I was just stupid for never writing them down, but I guess that's what most people do? I mean like, if she says the name of a medication I might remember it, but I don't remember why I stopped taking each one other than they were all shit...lol

I don't know why to me, it just seems really weird that people keep track of that. I have no idea why...maybe people just have really good memories and can remember all that? I guess it probably would be a good idea to start...

 

When you have any kind of illness, particularly a chronic illness, it is important to track information like treatments (meds, surgeries, other), effects, and the names of the doctors who performed those treatments (prescribed meds, led the surgery team, etc.). Otherwise any new doctors treating the illness (or something related/adjacent to it) have to start almost from ground zero. This will slow the progress on your treatment and prevent doctors from seeing patterns or new treatment options that might be beneficial.

My memory is shit. I keep two spreadsheets (because this Geek is a geek). Others here keep word documents. It's never too late to start! Take a look at a recent post I made on exactly this topic.

 

 

 

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Posted (edited)

Well maybe not a complete recall, but at least something you should have somewhat history on.

The point is that different disorders generally have different reactions to different medications. Everyone's mileage may vary of course.

Example. Say you took some Zoloft and it caused you to have a psychotic break. You still might have depression, however manic switching would imply that you may be bipolar.

There is also the titration time required, especially for anti-depressants. If you ran through quite a few ADs, but only stuck with them for 2 weeks each and they didn't work..that generally isn't long enough to determine if they are effective or not.

Dose? Well say you might have been on Wellbutrin, but only on a 150mg dose and did fuck all. That is generally an adjunct dose. Alone, the generally accepted therapeutic dose is 300mg.

Class of medications? Say you took Lamictal, and it worked but you got the rash. That would suggest that other anticonvulsant mood stabilizers are on the table now, like carbamazapine, oxcarbazapine, valproic acid, topamax, gabapentin.

And so on.

Edited by argh

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Posted (edited)

Oh, I remember Lamictal. I did get the rash! Lol, so there's one. I get what you guys are saying...thanks for the advice, I guess I will start doing that. I feel like a fucking idiot. I'm normally so smart and prepared in other areas. I guess it's possible I am sabotaging myself on purpose, although I wasn't aware it was in this way.

Also, that thread was really useful, mostly because somewhere in there someone (not sure if it was you) mentioned I might be able to call my old doctors and get a record. Maybe I could try that, I still have two days.

Edited by censer

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You should bring a list of all meds, dosages, and prescriber to every doctor's appointment, any docs that will be prescribing for you. They have to have fresh information so they can select the right drug that will not interfere with existing treatment. This is very important.

I take about 14 seperate meds plus prn's and the way I remember all of them and the dosage is when I take the med I open the bottle, say the meds name and dosage. I also look at the pills so I develop a memory for what each pill looks like. After doing this for a few weeks you be able to recall all your meds from memory.

 

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41 minutes ago, notloki said:

I take about 14 seperate meds plus prn's and the way I remember all of them and the dosage is when I take the med I open the bottle, say the meds name and dosage. I also look at the pills so I develop a memory for what each pill looks like. After doing this for a few weeks you be able to recall all your meds from memory.

I keep a list of my current meds with dosages in the health app on my phone. That list is available from the lock screen in the event EMTs need it, but I also reference it at regular appointments. I get my meds from Walgreens. Through their app, I can see pictures of what each pill/capsule dispensed looks like. I think that is generally less important to know than what you're currently taking and how much.

It's not generally necessary to bring your history in more than once (per provider). Just the list of current meds.

 

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2 minutes ago, Geek said:

I keep a list of my current meds with dosages in the health app on my phone. That list is available from the lock screen in the event EMTs need it, but I also reference it at regular appointments. I get my meds from Walgreens. Through their app, I can see pictures of what each pill/capsule dispensed looks like. I think that is generally less important to know than what you're currently taking and how much.

It's not generally necessary to bring your history in more than once (per provider). Just the list of current meds.

 

Do to seizures, I have a Medic Alert pendant hanging around my neck, call the number and you have access to all my meds, doses and dosages. Doctor contact info is provided plus a short history and Dx. I agree about history, once is enough. Otherwise well have to agree to disagree.

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2 hours ago, censer said:

I have another thread posted if you would like a detailed review of my history, but in short, I've been to a shit ton of psychiatrists, and one major therapist (+ DBT for a brief period of time which I had accountability issues with on my part). I am very jaded by being put on every medication in the world, nothing helping, and therapy teaching me all about why all my problems exist, but never getting me in touch with them or helping me cope. Still, nobody has any idea what's really wrong with me, but there is clearly something very wrong that has gone from "kind of interfering with my life" to "at least somewhat likely to become fatal" in a few years' time.

So, I ask you, as I am about to get gutted for 260 more dollars -- do you, who have been through the psychiatric & therapy mill and have at least been mostly successful (enough to say you enjoy living more than 30% of the time), have any advice for me? I am going to ask a bunch of random questions now, but this is just to get your brain going and you don't need to answer them all specifically if you feel they are not relevant. I think I have a lot of problems communicating, so I thought I'd ask some other people who might be better at communicating their feelings above the emotional competency of a  3-year-old. I'm just trying to get a discussion going, and since I don't know what to do the answer is probably not going to be in this list of questions. ANYWAY...

Do you give symptoms as they are right now? Do you give a whole history of your life? Do you specifically just list out traumas? Do you tell them about your past history with other doctors and diagnoses? Is there anything I can write, plan, or bring in advance that would really help find me a diagnosis, or more importantly the result of that, a treatment plan that works? For example, I've been tracking my moods for 2 months, and I've also written several essays (one was at the time I made the appointment, when I was very depressed, to try and capture exactly how I was feeling at the time). If you have thought about your diagnosis, does it help to tell them what you believe your diagnosis is, or does that anchor them? I have been heavy into psychology literature for a few years now, so while I'm certainly no doctor I'd like to think I'm a little more versed and my opinion might matter since I can address my symptoms methodically. The other problem is, I feel like I have different problems all the time. Like I'm anxious when I'm in public. I get depressed when I'm alone. But also, I have huge ups, and relationships where I'm practically manic. Almost like I have constantly shifting mental issues, like whatever state I'm in is always its own breed of crazy. So it's hard to even pinpoint when something works or doesn't work, because my moods shift so often anyway...I guess I'm rambling now but you see why this is so much trouble...In order to list all this out, I would basically write a whole essay, and my whole hour session would be spent reading it, which is really stupid and feels like a huge waste of money, when I bet there's a way to tell her all the same information in a much shorter period of time.

If it helps you to help me, this doctor is a (very expensive, and I believe relatively talented) psychopharmacologist. She is better than pretty much any therapist I've known, so that's why this is under therapy and not a board related to medication. I have seen her once before, and she had some good ideas, but I abandoned the whole thing because again, accountability issues. She is the only doctor, psychiatrists and therapists alike, who I've met so far who I feel might actually be competent enough to help me, so I want to give it all I've got and put her surely very intelligent brain to use.

Thank you very much if you've read this whole thing, and thank you in advance for any advice you might have.

Concentrate on the symptoms that are happening right now, you can only treat the now and not the past with meds. If you have regular different symptoms than you are having now mention it briefly. I see a psychopharmacologist, too. He does not want to hear anything about psychology, just symptoms and side effects. 

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Thank you all for the good advice. I went ahead and called my previous psychiatrists and tried to get lists of my meds. I only managed to talk to 1 out of 3, and it was a terrible experience. I honestly got the impression from the call that she may not even be a real doctor, or is otherwise trying to cover something up, because she started acting super sketchy as soon as I asked if I could get a history of some sort. She said "call me next week" (which is too late anyway for my first visit), and then she immediately hung up without saying bye...but anyway... #2 just rang forever, no machine, and #3 I left a message. Out of desperation I also called my old therapist to see if maybe he just happened to note any of this stuff down, since he was usually pretty reliable so I guess there's a chance. I am not taking anything currently, so that part is easy at least.

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1 hour ago, censer said:

Thank you all for the good advice. I went ahead and called my previous psychiatrists and tried to get lists of my meds. I only managed to talk to 1 out of 3, and it was a terrible experience.

You could also try calling your pharmacy. They should be able to provide up to 7 years of rx records.

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I admit I never kept a med record either. Oops. Too late now in my case. My current pdoc wanted to start from scratch asking me questions without any records or input from the previous pdoc which seemed odd but it’s worked out well with him so maybe he has his reasons. I hope this person works out for you, I think you’ve maybe had the appointment by now.  

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