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Organizing Your Medical Records & History - Talking to your Doctors

This is going to be complicated, but it's important. If you aren't up for this right now, get some help. Somebody needs to do these things.

Whether you've not yet seen a psychiatrist or you've already seen several over the course of years you need to keep all your medical records, psychiatric and non-psychiatric, nice and organized to help you talk to your doctors.

 
As for talking to your doctors you'll need your history to prepare your script and to answer any questions. If you see multiple specialists for multiple problems, it's best to keep the histories in separate binders. I know, it's all connected. No, really, it is. Some physical issues have a profound impact on psychiatric disorders, and your mental illness may really make your non-psychiatric ailment that much more difficult to deal with. Drug-drug interactions are the easiest thing to comprehend when the psychiatric and non-psychiatric collide. The problem is most psychiatrists can't deal with non-psychiatric issues, and mental illness is something that non-psychiatric specialists often don't even want to hear about. All of your doctors need to be aware of all of your health issues, that is a given. Even your dentist needs to know you're crazy, because anticonvulsants can be murder on your teeth and gums. But it's just easier to split your histories into psychiatric and non-psychiatric. If you have multiple diagnoses should that require different binders? Here's how you decide - do you see a different doctor for it? If so, it goes in a different binder. You don't start a new binder if you switch doctors in mid stream, as the point of this is to keep your records together in case you do switch doctors. But you want a binder for each major, life changing diagnosis you deal with that entails a new doctor or a whole new batch of long-term medications.

 

 

OK, so you get a nice binder for your history. Right in front is your current cocktail of medications, dosages and dosing schedule. You have the date you began that cocktail. Nothing else. For those of you taking one drug once or twice a day this is pretty easy.
Behind that is a history of your cocktails. It's the same information as above, just going back in time. See my log of medications as an example, just don't mix your side effects in at this point.
Now you have another section for your symptoms and your diagnoses. Be sure to get a copy of your official diagnoses so you know exactly what is wrong with you! You need to put in your own words what the problem is. Yes, some of us could write a book for this section. Describe what makes you so crazy that you need medications for it. This is where it is really hard for a lot of people. This is the point of denial and acceptance. Am I really mentally ill? You've got to look at that diagnosis and start putting down on paper what you've done or how you've felt that someone thinks you need powerful psychiatric medications to help you think straight. These are some of the most difficult steps in the 12 Steps to Stay on Drugs:

Step 1 - Accepting your diagnosis.

Step 4 - Making a fearless moral inventory of yourself.

Step 5 - Admitting the exact nature of your symptoms and all the bad stuff you may have done when not medicated.

It's going to be painful, but you need to do it. Write down what it is that makes it so bad that you need powerful, expensive drugs to think straight. Don't leave anything out.   Get the opinions of other people.  That's not going to be a lot of fun either, but it's necessary.  Hey, I had no clue about the absence seizures.  That's the very nature of them, you just don't know that one happened.

 

You'll need to have dividers with pockets or that are clear where you can insert things. This is where your PI sheets will live after you get them. Remember to demand the real thing! If you can't get the real thing from an HMO, then put whatever you get from the HMO here and download and print out a PI sheet from here or the website for the medication in question. The PI sheet is your proof of purchase, but you need something official. You need proof that you did, in fact, take a particular medication. How you organize the binder is up to you, most current meds in the front, in the back or in alphabetical order or by which were the most helpful, it doesn't really matter. Just as long as it is organized in a way that allows you to get to the information quickly during appointments with your doctor.  

 

In addition to keeping the PI sheet for every med you take, keep one bottle or box it came in.  Preferably one that has your name on it, but one empty bottle of whatever it is you took will have to do.   Again, if worse comes to worse and somebody doesn't believe that you took something, you have some proof that you did.  It doesn't happen often that a patient has to prove as if in a court o'law that they took a particular med, but we are mental patients after all, we tend not to be believed as much as the more conventionally sane.   That one bottle is just a bit of insurance you should never need.

With the binder divided into sections by medication, you keep a journal of your dosage, when and how you take your medications, and the effects and side effects you experience with each new medication. As dosages and dosage schedules change they are on pages all their own. You can organize the dosage history however it makes the most sense to you, most current on top or the first one on top. You have a date when you began a dosage, how much you take, when you take it and any special instructions. For instance, on a page titled Topamax:

August 4th, 2002 -100mg, 25mg first thing in the morning, 75mg at bedtime.

December 21st, 2002 -150mg, 25mg first thing in the morning, 125mg at bedtime.

January 31st 2003 - 175mg, 25mg first thing in the morning, 25mg at noon, 125mg at bedtime.

If you stop taking a medication you would record it on this page, along with your discontinuation schedule.

If this seems redundant with the cocktail in the front, it is. But when you're trying to track down effects and side effects the standard practice is to isolate one drug, even if it is sometimes the combination of meds that cause things to happen. But most doctors are used to the method of looking at one drug at a time, so just humor them, it makes everything easier for everyone.

 

 

Now you get to keep a journal of your side effects. Here's your chance to go wild with side effect paranoia and to complain, complain, complain about the side effects. Again, take my log of medications as an example. Go back to the entries of August 2002 when I just went on and on about how my crazy meds sucked so much donkey dong. A lot of what you're experiencing will go away. When and if the medications work for you might find that some of those side effects just aren't that high a price to pay for mental health. But when they first hit you and you don't know what to expect, just blame everything on the meds. It's cathartic. Not everything is the fault of the meds, but when you first take them everything may as well be. It sure seems that way. Anyway who knows what is or isn't the first sign of something important, right? You probably don't want to bug your doctor about every little thing, but if you have a record of every little thing and something turns out to be a big deal later on it makes it a lot easier to figure out.
Now, you got the PI sheet in a folder with a pocket and you have a record of the side effect for a med. Get a highlighter and highlight that side effect on the PI sheet. You may need to look up some obscure medical terminology for this, but that's why I have a link to a medical dictionary and why RXlist has a lot of terms defined in their HTML versions of monographs. The Canadian versions of monographs frequently list side effects in English instead of obscure medical terms, which is why I've included them when they are available. Highlighting the side effects on the PI sheet is important for three reasons:

      1. It's so damn therapeutic. No, you're not any crazier than your original diagnosis. No, it's not all in your head. That crazy med really does make your ears ring!

       

      1. Some doctors won't believe you, or they won't believe that the med has anything to do with a particular side effect. It sucks, but that's the way it is. Recording when and how a side effect strikes is the best you can do about a doctor believing you. Highlighting it on the PI sheet is proof that a medication is known to cause a particular effect. Keep in mind that if it's a rare effect it really may not be the med's fault, but it did happen to somebody. Few doctors are like this, but enough jerks are out there that I suggest you protect yourself in this manner.

       

      1. It's not really the doctor's fault when it comes to side effects. I certainly can't keep everything straight, and I'm concentrating most of my attention on a subset of psychiatric medications. Psychiatrists were trained as regular doctors, so they have a buttload of knowledge in their heads about psychiatric and non-psychiatric drugs. It's easy to forget or get confused about something. It's hard to accept but your doctor is only human. People have foibles and they make mistakes. Plus when a rare or infrequent side effect comes up, well, frankly no one expected you to really get drunk from water when you're on Tegretol. Just because it's been recorded doesn't mean they think it will happen to one of their patients. 

 

If an obscure medical term was used be sure to note it in your log of side effects, so you know which side effect on the PI sheet corresponds to what you actually experienced.

 

 

 

 

 

 

Then as side effects go away, record that.
Be sure to date everything. The date that something happens is best, but a date you enter something in your journal is better than nothing. A lot of these meds mess with our memories, and we aren't always together enough to record our progress when something happens.   If you have a witness, all the better.  Include that person's name and any contact information.
Frequently doctors will prescribe multiple medications at once, so it's difficult to determine which medication is causing a particular side effect. This is where the PI sheets, this site and your support groups come in handy. Between here, the sites I link to and the PI sheet you should be able to figure out which drug is the likely culprit of a particular side effect. If you still can't figure it out, ask in the support group. The experiences of the people taking these meds in the real world are what matter the most. If you still can't find out which med is causing something, blame all your meds until you can speak to your doctor. Sometimes it's the cocktail itself that can cause a side effect.
Now, are you getting better? Can you attribute the reduction of certain symptoms to a particular medication? If so, record that on another page and include it in the section for the med. With cocktails of multiple medications this is particularly tricky, and sometimes impossible. It's often the combination of two or more medications that results in the abatement of some symptoms. In that case everybody gets credit.
Finally there's a section that is a journal of your overall progress. It doesn't have to be daily.  Record when there are changes, or write something down before your doctor's appointment. There are books for various disorders that describe various tools to use in charting your progress, things like mood charts. But if you do something especially good or especially bad, record it. What's especially good? That depends on where you were when you started the meds. If you were together enough to do the dishes and the laundry when that was impossible before, in it goes. Record long periods of symptoms being gone, or if they flare up. What you record is going to be really dependent upon your diagnosis, any concurrent psychotherapy you're receiving and your life in general.

Here's what Mouse does - she identifies key areas, like depression, anxiety, logical thought and follow through.  Your key areas will be the same or different:

 

 

 

How is your mood?
Are you experiencing pesky hallucinations?  Is there a change in their duration or frequency?
How bad are those anxiety attacks?  How long do they last?  Are they more or less frequent?
How are you able to deal with your life?  Are you eating regularly?  Are the dishes getting done and is the garbage getting taken out?

 

Another method was  posted in the old Crazy Talk forum:

 
Aside from the tape recorder, you might try keeping a small pad with you as an open log, to wit:

8:15 Head swimming
8:37 Feel like screaming, but other personality says no
9:03 Hyper-focusing on the "2" button on the TV remote
9:59 At 10:00 I'm going to kill myself
10:01 Well, that didn't work

etc. You can do the same thing with your tape recorder.

You don't have to keep it very long; if you just keep it faithfully through a couple of episodes, taking careful observations of your own feelings and behaviors (being conscious of your state and taking note of it is the key), it will give a pretty good sampling of how you are in the throes of it. I took such a log and developed a short multimedia cd for my t-doc titled "7 Minutes In My Head." It was pretty effective.


 

 

 

You want to organize the list by what is the most important, but just as long as you get something down, that's what is critical.  It's best to select the sort of things that you and your family and friends can easily say you're improving or getting worse.   And, yes, once again you need the input of others here.  Your opinion is the most important, but you can't judge how you act from inside of you on a lot of things.   Trust me on this.  You may think you're doing just fine on things that are a right mess.  Before her appointments Mouse grills me, her friends and her mom on how she is doing with her key areas.

And when weird stuff just happens to you, anything that triggers you, that freaks you out, that sets you off, that causes anything nasty to happen, record that.  Get the names and contact information of any witnesses, just as if it were a crime.  Because it is a crime of sorts, a crime against your mental health.  Sometimes things happen for no reason at all, but sometimes there are reasons for things.

Keep the list short, you don't want to overwhelm your doctor.  You can chart and document as much as you feel like and are capable of charting and documenting, but don't take too much in with you as part of the script you make up for your doctor's appointment.   We'll cover how to do that in the article on how to talk with your doctor.   For now see Dr. Phelps' article on the subject.   While it deals primarily with mood disorders, the tactics can apply to any mental illness.

 

 

VisusScan 160x600 msg9 So why is everything in a binder, and not just on a computer? Aren't computers the way to go? Sure, you can type everything up in a computer, but you'll want to print it out and keep it in a binder. Believe me, from lots of experience of bringing a computer with us to psychiatric appointments, looking stuff up in a binder is a lot faster. And binders don't crash or lose power. The worst thing that happens to a binder is they pop open and all the paper falls out. But if you have a title on each page, page numbers, dates for each journal entries and all that good stuff that decent word processors can give you, reorganizing paper after a binder crash is so much easier than dealing with a computer crash during a doctor's appointment. For this application paper is the superior medium.

The advantage to keeping a computerized record is putting it up on a website, like I have.  You get my life on my blog, complete with a section on my meds with effects and side effects.  If you want to know what's making me crazy or sane of late, all y'all can see it.  My doctor can look it up any time he likes.  You don't have to make it so public.  You can put up a site and ask Google and maybe the other search engines to remove it from their searches (I don't bother with other search engines so I don't know how they work).  With an anonymous geocities or similar free webhosting location, who but your doctor would know it's your cocktail and diary anyway?   The two of you can agree on a code name, although a secret site that is removed from the search engine directories is just easier to deal with.

With everything in a binder you can bring your history with you on your appointments and have documentation for everything you say. If your doctor questions you about a side effect not being associated with a drug, you can whip out the PI sheet and point it out. You also have when you started taking the med and when you began to experience the side effect in question.  If your doctor doesn't believe some weird-ass event happened to you and starts getting this "you are so paranoid" vibe, pull out the names of witnesses.

If, for some reason, you have to change doctors, everything is right there. You don't have to waste time in your appointment having records found. You have a record of all the meds you took, when you took them and what the results were. This prevents having to ride the same horsie on the med-go-round unnecessarily. There are times when it is appropriate to revisit a medication, because enough things have changed to warrant giving it another try. But a doctor's ignorance or disbelief of your history with a med is not an appropriate reason to do so.

These histories have a positive aspect as well. As you get better you can review how bad you were. You can see the improvement. You can compare where you are now with where you were then and make the decision if the side effects that you still experience are worth having to never feel like that again. You can see that side effects can be temporary. It's also a good reminder to as to why some of us need to stay on our medications for the duration.

This may seem like a lot of work, but it is well worth it. Organizing your records in a fashion as described above will really help you understand what is going on in the healing process. You'll see the progress of the meds working, or if they aren't working it's not just "in your head" or a question of impatience, you'll have documentary evidence that particular pills are worthless for you. You won't have to spend too much time and energy questioning your own feelings. Even if a friend or family member is helping you with this task it will help you feel more in control of things.

Being in control of things is important.  Yes, this seems like a total control freak perspective.  I'm autistic, you'll find my picture in the definition of control freak in some of the finer dictionaries.  But so many people feel so out of control during the entire process of trying to get their mental illnesses under control, and you can't afford to be out of control.  If you need to be taking meds you're managing the symptoms of conditions for which there are yet no cures.  How can you expect to manage anything if you're not in control?  Are you going to manage the symptoms or is your doctor going to manage your symptoms?  Whose responsibility is this illness?  If you do something crazy-bad, crazy-bad enough to get arrested, who goes to jail, you or your doctor?  The illness is not your fault, but it is your responsibility, like it or not.  Unless a patient is living in a hospital, the illness is somebody's responsibility outside of the doctor's office, either the person with the illness or a family member.

What's it like to be crazy?  Part of what it's like is being out of control all the time.

What's it like to stop being crazy?  To start taking control of your life.

No matter who is keeping the records you can avoid two common pitfalls that sabotage recovery:

Without good records, though, you may think a doctor is bullying you into continuing a useless medication when you really haven't given it enough time. Or you'll just be willing to cave into the command to continue with a glorified sugar pill because you have nothing to back up what you say about its effects (or lack thereof) and nobody believes you anyway since you're just some nutjob.

 

Good record keeping is an important part of taking control of the healing process.

You don't have to be pushed around.

Remember, the doctors work for you. But good employees will sometimes require documentation before just going off and doing something.

Take control, get organized and keep taking your crazy meds.

 

If you still have unanswered questions about this or other medications, including which one is, or combination of meds are the best for you, your best bet is to ask on Crazy Meds Talk.  Better yet, if you want to let the world know how they worked out for you and want to help out others in their quest for the correct meds, join the party.
If you  want to discuss your issues, I suggest checking out one of the various support groups online.  
Otherwise, if you're letting me know about how much you like or hate the site, or  need to let me know about medication effects in private, then just drop a note to jerod23 at gmail dot com  Honestly, I usually don't have a lot of time to answer e-mail these days.  The snide autoresponse message that may or may not hit your mailbox is going to tell you the same thing.
Another problem is that you may not get a response even if I wanted to send you one.  You see, so many dickweeds with malicious intents and too much time on their hands have appropriated the crazymeds.org domain name to use for their spam, viruses and the like.  Subsequently some lazy-ass e-mail protection software authors just go by the domain name, and not the IP address.  So I've been blacklisted because of the actions of others.  Or the software just doesn't like the domain name because of the "crazy" and/or "meds."  Or your question about a particular medication will set off spam flags.  So the e-mail just wouldn't go through regardless.  Sorry.

 

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Created Monday, December 1, 2003

Last updated Friday, March 04, 2011

 

 

Copyright © 2003, 2004 Jerod Poore. All rights reserved.

All material on this site is copyright © 2003, 2004 Jerod Poore. Except, of course, the PI sheets, that are the property of the drug companies who developed the drugs the sheets are about.  And any documents that are written by other people which may be posted to this site will remain the property of the original authors.

All rights reserved. No warranty is expressed or implied in this information. Consult one or more doctors and pharmacists before taking, or changing how you take any psychiatric medication. Consult a lawyer about any legal matters.  Your mileage may vary. What happened to us won't necessarily happen to you. I am not a doctor, a lawyer, nor a pharmacist. I don't portray any of them here or on TV. Only a doctor can diagnose and treat an illness. Only a lawyer can offer real legal advice.  Some doctors tend to get pissed off by patients who know too much about medications, so tread lightly when and where appropriate. Diagnosing yourself from a website is like defending yourself in court, you suddenly have a fool for a doctor. Don't be a cyberchondriac, thinking you have every disease you see a website about, or that you'll get every side effect from every medication. All information on this site has been obtained through personal experience, the experiences of my friends, the experiences of people reported on online support groups, and from sources that are referenced throughout the site. As such the information presented here is not a substitute for real medical advice from your real doctor, just a compliment to it.  No psychiatrists or pharmacists were harmed in the production of this website. All brand names of the drugs listed in this site are the trademarks of the companies listed after them in the pages about the drugs, even though those companies may or may not have been acquired by other companies who may or may not be listed in this site by the time you read this. Always read the PI sheet that comes with your medications and never ever throw them away.  If you didn't get a PI sheet, demand one.  No information about visitors to this site is collected or saved. Although from time to time I do look at search terms used to find it in an effort to make the information I present more relevant. Use only as directed. Void where prohibited.

 

"Everything is true, nothing is permitted." - Jerod Poore