Family and Caregiver Schizophrenia Discussion Forum

Dealing with side effects to antipsychotics and other health issues


#1

I’m wondering if any of you have had to deal with the problem of multiple health issues, some of which are caused by the meds my dtr takes. She has so many health issues that I feel that we need a coordinator of some sort, so that all of her doctors know all of the issues. We work on an issue for a short time and then something else becomes more critical. For example, she deals with chronic constipation and difficulty urinating because of her meds. She takes several meds for the constipation, which don’t help very much, so she is constantly bloated and her bladder is affected by the full colon. To add another layer to the problem, she has PMDD, which is like PMS on steroids. There are only 7-10 days per month that she is not affected by those problems, such as extreme irritability, anger, increased paranoia, migraines, brain zaps. She honestly has so many health issues, and has not felt good for over 2 years. She has extra pyramidal type uncontrollable muscle movement, PNES, which is non epileptic seizures. I could go on and on. We are overwhelmed. I need a doctor who can address her condition as a whole. Does anyone know how this should be dealt with? I feel so bad for her since her life is so limited by all these things, and she seems to never feel good. I just don’t know where to start. Thanks for letting me vent my frustration.


#2

I’m glad you could vent here and sorry about your daughter’s health issues.

Where we live, there is such a thing as a “health home”:

https://www.medicaid.gov/medicaid/ltss/health-homes/index.html

Your daughter ideally would have a “primary care provider”, a GP or internist, who interacted with all other providers, at least with records. The primary care provider can also be a psych doc or community health center that is set up to do it.


#3

Thank you I will check this out! What state are you in? I’m in Arizona.


#4

Hereandhere, according to the info on the link Arizona doesn’t have health houses. :pensive:


#5

After reading the responses so far, perhaps this will help too?

Because we move…and I have brain capacity of a moth…I keep everything in a binder.
This goes to all appointments.

I ask…and confirm that it’s done ASAP…for ROI’s.
Each and every appointment with each provider is the same. I’m friendly, patient, and carry that binder. Everything goes in there. Need to know anything? I probably don’t remember, but here’s his last bloodwork/test/prescription/etc.

I also ask to make sure that:

  • there is an ROI on file for specific Dr’s/School/etc
  • to release notes from today’s visit/blood test/etc. to these places

It really helps if you can do this all through one hospital, but this doesn’t always happen. IF that’s the case (like for us right now in LA), then each Dr is reminded to check the records as to the other providers. Give them a minute, they can do it right there. It helps when it comes to conflicting medications or issues. SOME hospitals have alarms connected when prescriptions are written, or for serious situations, other’s do not.

We even had one Dr’s office (family practice) which connected and shared information with another hospital. I chose Dr’s and labs from that hospital.

Main point: something about that large orange binder reminds the Dr’s that I have to keep alot of stuff together. It’s commented on, and I find that the Drs/Nurses will print things off, or write notes immediately to other agencies. They are willing to “talk” to one another, it’s just most times they are swamped. IF I have the ROI’s and the contact information ready, it’s easier.

Get to know the pharmacists too…they catch things.


#6

Excellent advice, thank you. I’m gonna print this out and implement right away! One question-- what does ROI stand for?


#7

Release of Information
A simple document allowing Drs to talk. Uber easy to have on file, what’s most important is that you have the contact info for all parties, and that they know they have it released. Schools love them. The office will have one on hand for each agency, you simply fill them out and they are permitted to communicate for a stipulated period of time. (Any office…from the hospital to the Dr to school.)

I ask to fill them out, instead of waiting to be asked. If it’s on file, and they have to interact in an emergency it’s already possible. I am thanked again and again when I tell a Dr that he can speak with the other agency as there is an ROI on file at the desk.

AND Dr’s check to see if it is.
It helps.

Binder contains Birth Certificates, SS cards, immunization records…shoooot, even my mamogram results. I don’t have to search for anything at home, and if they need to double check something, it’s there. Lab results are the biggest request, especially psych Dr’s.


#8

Two sample ROI’s:



#9

Thank you! And Happy New Year!


#10

If you can also keep a notebook that describes all the side effects she is experiencing, including duration and severity (like a diary). This will also help you to work out which ones really adversely affect her if (or when…) they change her meds. I’m so sorry she’s going through this. It’s why many people stop taking them, and again, I’m sorry to say it, but all these meds have side effects of one kind or another. It’s a rotten situation.
Happy New Year to you too.


#11

Thanks, good advice. I don’t know why I haven’t thought of this before! I guess I have been leaving it up to my daughter but that obviously isn’t working :face_with_raised_eyebrow:


#12

They have a DNA test that can tell you which medications her body metabolizes and which ones she doesn’t. The meds that are not metabolized tend to build up in her system and are more prone to cause side effects. I would ask her doctor to have this test done. It’s a start.


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#13

Do you know what kind of doctor would be responsible for ordering such a test? Is it the psychiatrist or can a PCP do it? Some other specialist like a neurologist?


#14

Thank you. We are having that test done this week! I’m very hopeful that it will help her. Her psychiatrist is doing the test.


#15

My son’s psychiatrist ordered it.


#16

We are getting this test done tomorrow. Did you see benefits from this test msgiegerich?


#17

Actually the results showed that there are only three antipsychotics that he metabolizes. All of which we have tried with no success. I still feel it is a useful tool for the doctors.
I don’t think they have come up with the drug that will take away the voices for my son yet. I am still praying for a cure as well.
Best of luck. I hope it will help you in making decisions as to which meds to put your daughter on.
I’m not sure why this is a test you have to ask for. You would think it would be a standard test administered before putting a patient on a cornucopia of medications while looking for one that works.


#18

My dtr had the genetic test done last week. Hoping to hear results soon. I think that any change in meds for her will have to be done very slowly. Seems like everything is so hard, never simple. :rage: