Have you ever told your pdoc you want off of your meds?

cybermember · Jan 18, 2013, 02:42 PM

Did they work with you or did they drop you?

usbusi · 03:05 PM

Probably depends on the psychiatrist. I dropped Risperdal then Depakote, keeping Celexa, when I was first diagnosed / after my first manic episode, with the Pdoc's OK. He had me try later Trileptal I think it was which gave me the rash, so I didn't continue. So for many years just on Celexa. Then quit cold turkey due to losing my health insurance. Then went back on Wellbutrin, and eventually after another manic episode I got on and stayed on Abilify. Or it might have been after the third manic episode, as there was a low dose of Lithium after the 2nd manic episode I think, which probably didn't do any good. I remain on Wellbutrin and Abilify and it has been two years without a manic episode so far. Taking it to be on the safe side, although I probably don't really need it (Abilify.) As I don't cycle up and down, I am stable. I wouldn't call it perfect or normal compared to my brain before the mental illness diagnosis, but stable.

Clinte89 · Jan 18, 2013, 03:03 PM

No but I assume mine would be against it. Just because of my past.

hamster-bamster · Jan 18, 2013, 03:07 PM

Just yesterday, made a case for not taking AP's and disclosed already having been off them for several weeks. He said we would proceed in this fashion as I wanted to, but with the game plan on my taking Abilify if I need it (I have a bottle at home) and seeing him in a month for observation. I remain on my other meds. He was glad I did not want off all meds, just APs. I demonstrated that I had not had symptoms of mania or depression while already being off AP's. I also showed how being off Geodon improved things sexually, which was convincing. He said that he was hesitant as with all medication changes, and looked hesitant, but he went along.

avlady · Jan 18, 2013, 03:16 PM

I have tried several times in the past I ended up in the hospital after taking myself off of them I learned the hard way that I do need the meds

Jan 18, 2013, 03:22 PM

Yeah I have a couple of times and he was strongly against it because of my state of my mind, I am pretty sure that I would be in hospital without them too.

cybermember · Jan 18, 2013, 03:41 PM

You see, lately I've been experiencing a new side effect from my AP and it's really interfering with the quality of my life (jaw muscles are tight and I'm having trouble chewing). I've been on my AP for about 5 years. Pdoc did lower my Geodon by 20 mg bringing me to a 60 mg dose and that somewhat helped but it's still not enough. I went back to pdoc and she gave me a script for Cogentin, but by the second half-dose I felt horrible as Cogentin comes with it's own side effects. So now my only recourse is to lower my AP by another 20 mg bringing me to 40 mg and see how that goes. But I'm actually hesitant in telling my pdoc what I'm doing for fear she won't work with me and will drop me. She also prescribes an antidepressant and sleep med for me so I'm not sure if she really would drop me. IDK. I just want this side effect to resolve so I can chew my food. Currently I am asymptomatic.

Anika. · 03:55 PM

Mine was against it, as most are. He would not even help me lower the doses and so I did do it myself very slowly. His reasoning would be looking at the past when I dropped my meds and it was bad. My reasoning was that with the meds it was bad, in the past I just dropped them but I am not in the same place as I was then. I worked really hard to acheive mental wellness in various different ways, the past is not exactly an indication of things to come.

I have been off them and doing better than ever before, I know that I made the right choice. However even though I am stable and have been able to maintain that I swear he would still not agree. That is not what he has been taught. My GP on the other hand see's how much better I am doing and is very happy with the outcome. He even called me a model patient for Bipolar. My dr's perspectives are worlds apart. But I will trust the one that holds my wellbeing as a priority.

Keep in mind that this is your body and mind not your dr's. Would she put up with these side effects, would she even take these meds if it was her? I asked my pdoc that, he wouldn't answer. It's possible to manage bipolar without AP's. The side effects as you know can be quite bad.

Don't be afraid to tell her what you want, and what is not ok for you. If she is a good dr she will want to work with you on this. If she drops you because you want to be an active particpant in your own health then maybe it's not a good dr to have in the first place.

hamster-bamster · Jan 18, 2013, 03:44 PM

Quote:

Originally Posted by cybermember

You see, lately I've been experiencing a new side effect from my AP and it's really interfering with the quality of my life (jaw muscles are tight and I'm having trouble chewing). I've been on my AP for about 5 years. Pdoc did lower my Geodon by 20 mg bringing me to a 60 mg dose and that somewhat helped but it's still not enough. I went back to pdoc and she gave me a script for Cogentin, but by the second half-dose I felt horrible as Cogentin comes with it's own side effects. So now my only recourse is to lower my AP by another 20 mg bringing me to 40 mg and see how that goes. But I'm actually hesitant in telling my pdoc what I'm doing for fear she won't work with me and will drop me. She also prescribes an antidepressant and sleep med for me so I'm not sure if she'll if she would drop me. IDK. I just want this side effect to resolve so I can chew my food.

This is not called "wanting off the meds". This is called "dealing with side effects", "adjustments to correct for side effects". Do not even talk about it in terms of "wanting off the meds". Chewing your food is very important. Of course you want to chew your food, who would not! Who would blame you for it??

hamster-bamster · Jan 18, 2013, 03:46 PM

In her famous book about BP in her own life, Kay Jamison describes how her doctor stood by her while she went off and then back on Lithium.

Her doctor was probably extraordinary and it was a long time ago; maybe they are more into protecting themselves from liability now. Still, a good read.

usbusi · 03:53 PM

As I think Hamster was alluding to, how about requesting a change of AP? Such as Abilify?

cocoabeans · Jan 18, 2013, 04:07 PM

Hmm tell the doctor you're quitting meds? I never tried that one. Just cancelled future appointments and stopped taking 'em. It isn't like they're going to call me up at home and ask why I'm not coming in anymore. I disappear from the radar. The times Ive needed to go back on I just find a new doctor!

cybermember · Jan 18, 2013, 04:26 PM

Quote:

Originally Posted by hamster-bamster

This is not called "wanting off the meds". This is called "dealing with side effects", "adjustments to correct for side effects". Do not even talk about it in terms of "wanting off the meds". Chewing your food is very important. Of course you want to chew your food, who would not! Who would blame you for it??

In a way you can call it wanting off meds if your willing to keep lowering your dose enough to where there is minimal side effects but are no longer at a therapeutic dose. But I don't know what that low threshold is for "why even bother taking any AP". Last time I came off my meds I didn't tell my previous pdoc until things got out of hand and begged to be put back on. So I'm thinking the same thing would happen this time but this is a new pdoc as the old pdoc retired recently. This new pdoc is also the medical director of the joint. She's nothing like my old pdoc.

cybermember · Jan 18, 2013, 04:28 PM

Quote:

Originally Posted by usbusi

As I think Hamster was alluding to, how about requesting a change of AP? Such as Abilify?

We talked about Abilify and pdoc felt that Geodon has a better weight neutral profile so she suggested that I stick with it if there was any concern. Aside from the eating issue Geodon has been very good at controlling my symptoms.

hamster-bamster · Jan 18, 2013, 06:02 PM

Abilify has a good weight neutral profile too. In fact, FarmerGirl posted a link to a study of all atypical AP's on here a few days ago and Abilify was shown to be ahead of Geodon, but ever so slightly.

But Abilify can come with its own set of side effects for which Cogentin is taken, which you cannot tolerate. But there are other drugs to counteract Abilify-induced side effects, besides Cogentin, so you would still have options.

Geodon is not Lithium so there is no hard and fast rule as to what is therapeutic; there is no blood test/known therapeutic range for the blood levels. There are some general dosing guidelines only and the rest is up to you to observe monitoring yourself. But the jaw problem is not something to put up with. I have never heard of it before.

Victoria'smom · Jan 18, 2013, 06:03 PM

I say that a lot to pdoc. He's very understanding. We generally go over what medication he would take if needed. He lets me tweak things with his okay. He knows my goal is to be completely med free but he reminds me I have to go really, really slow to see what therapy can help me with and what needs meds.

cybermember · Jan 18, 2013, 09:49 PM

Quote:

Originally Posted by hamster-bamster

Abilify has a good weight neutral profile too. In fact, FarmerGirl posted a link to a study of all atypical AP's on here a few days ago and Abilify was shown to be ahead of Geodon, but ever so slightly.

But Abilify can come with its own set of side effects for which Cogentin is taken, which you cannot tolerate. But there are other drugs to counteract Abilify-induced side effects, besides Cogentin, so you would still have options.

Geodon is not Lithium so there is no hard and fast rule as to what is therapeutic; there is no blood test/known therapeutic range for the blood levels. There are some general dosing guidelines only and the rest is up to you to observe monitoring yourself. But the jaw problem is not something to put up with. I have never heard of it before.

After my experience with Cogentin I'm really hesitant to try something else to counteract this muscle rigidity in my jaw, thus my decision to lower my AP. But I don't know if I should tell my pdoc as I don't know how she'll react to this decision. It's crazy! I feel like a kid on the verge of getting into trouble. And how old am I?

cybermember · Jan 18, 2013, 09:52 PM

Quote:

Originally Posted by Miguel'smom

I say that a lot to pdoc. He's very understanding. We generally go over what medication he would take if needed. He lets me tweak things with his okay. He knows my goal is to be completely med free but he reminds me I have to go really, really slow to see what therapy can help me with and what needs meds.

Is your pdoc in Central New Jersey? Because I'd like to make an appt.

manicminer · Jan 18, 2013, 10:03 PM

this new guy was ok with it. we'll have to see how the follow up in march goes.

hamster-bamster · Jan 18, 2013, 10:24 PM

The inability to chew food is a complete showstopper. Just say it. It is not like you are having a barely perceptible tremor or are a tiny bit sedated.

Plus, you have hired the lady to be your prescriber and medical adviser. She is not in loco parentis to you. Is she by any chance much older than you are and authoritarian in her manner of speech?

hamster-bamster · Jan 18, 2013, 10:27 PM

Look, she did not dismiss your concerns about weight. Why would she dismiss your concerns about getting at least something to eat?

Charly1 · Jan 19, 2013, 01:22 AM

I have told my current pdoc. He just laughs at me. Actually he laughs at more for a lot of different reasons. Needless to say I am looking for another. I am currently weening myself off of Cymbalta. Can not stand the side effects.

Only advice I have is that it is your body, you know what you are feeling. If your pdoc won't work with you then it's time to get a new one. I say this eventhough I haven't accomplished it yet.

Work in progress.

BipolaRNurse · Jan 19, 2013, 02:56 AM

I haven't asked, because I know better. Medications haven't fixed me, but I'm light-years away from where I was ten months ago and for the first time in my life, nobody has to fight me to take them. I used to be one of those people who resisted taking meds because I didn't want to be "dependent" on them to function normally. Now I know that I'm one of those BPers who cannot manage their lives without meds, and I'm okay with that.