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I’ve been doing fine with no AHs for the past three days until it gets to about 4/430.  Is there something in my cocktail that could be wearing off then?  Is it some sort of stress related to the end of the work day?  Or is it just a weird coincidence?

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I think it’s poaaible to be worse at a certain time of day. Throughout adolescence my pdocs would give me extra PRNs to take mid/late afternoon cuz my symptoms always came on strong then. Have you mentioned it to doc? Maybe you could take a tiny bump of aap (zyprexa right) at like 3 to see if it helps 

 

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Thanks so much for writing.  I haven’t mentioned it yet—they only recently got infrequent enough that I could detect a possible pattern.  It’s still present, but I haven’t taken my night meds.  I could talk with my pdoc about a 2.5mg Zyprexa mid day or something like that.  fanapt is my other one, but it causes insomnia at anything other than morning.

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At my last appointment (Tuesday) she wanted to keep everything as is (20mg zyprexa, 9mg fanapt) since it seemed to be making progress and I'd just increased both within the past week and a half.  I hadn't noted this trend though.  So I just messaged her and alerted her to what I think might be going on and asked about either increasing fanapt to 12mg or adding 2.5mg zyprexa to the afternoon).  i said that I'll stay the course if that's really what she wants to do. 

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Posted (edited)

I called her office to let them know the latest development.  I accidentally only had 6 mg this morning so I took it as better than nothing.  Now symptoms have started at 1pm.  I asked about pushing it from 9 to 12 to see if that makes everything go away.

Edited by dancesintherain

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Posted (edited)

Strange to keep replying to myself...but I ended up just telling my pdoc receptionist that I didn’t have any thoughts.  The AH that started at 1 went away about 30 minutes after talking to her and didn’t come back at4/430.  They just started now though.  

i don’t have any clue what she wants to do.  I’m worried she will be as ticked off with me as I am with myself.

Edited by dancesintherain

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You should never worry about vocalizing your needs to your pdoc- it is their job afterall 

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Thanks—but I think I need to wait to tell her things before I have a better sense though.  Because she now has two emails and s phone call and follow up.  There’s a reason behind each one.  But that doesn’t make me feel less demanding.

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15 minutes ago, dancesintherain said:

Thanks—but I think I need to wait to tell her things before I have a better sense though.  Because she now has two emails and s phone call and follow up.  There’s a reason behind each one.  But that doesn’t make me feel less demanding.

I don’t necessarily think emphasizing that you need help is demanding, but I agree that a good approach might be to let her take it all in and get back to you 

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it's a good point. and one I might have to live with for now.  I was told at 3pm that I'd hear back after the next patient and it's now 6:30pm.  I'm sure she got busy, but it's frustrating to not get any word.

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1 hour ago, dancesintherain said:

it's a good point. and one I might have to live with for now.  I was told at 3pm that I'd hear back after the next patient and it's now 6:30pm.  I'm sure she got busy, but it's frustrating to not get any word.

Im sorry- I think a lot of us have been there- it sucks waiting for a response when you feel crappy- I hope you hear soon 

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@dancesintherain

Did you ever hear back? My pdoc suggested another 10 mg PRN zyprexa for when my symptoms flared up when I was already on 20 mg. Actually I’m supposed to be taking my zyprexa in a split dose (10 mg AM and 10 mg bedtime, but I don’t because I fear sedation.....but I really should try it at least once). So it would have been 30 mg total zyprexa if she added the PRN. Not sure how high your pdoc is willing to prescribe. Or maybe a fanapt increase like you mentioned. Not sure which would prove most helpful but your doc will know.

Anyway I hope she gets back to you ASAP. That’s super frustrating. 

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Hi Iceberg and Cheese.  No reply last one.  I’m glad I decided to leave work on time and head home.  I wasn’t going to because my commute involves public transit where I don’t always get a signal. But I would have been really ticked off if i waited that time and got nothing (same with showering and other things when I got home).

im torn about whether I even want her to do anything.  At the appointment on Tuesday, we were waiting to see if the higher fanapt dosage would get us anywhere.  I feel like that works more effectively on psychosis for me than Zyprexa.  Which I know sounds strange.  Just based on past experience.  But I’m okay with not changing if that’s what she decides I think.

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The frustrating thing is that whatever change she suggests (if any) I won't be able to implement until the weekend. I can't go from symptomatic but functional to non-functional.  Not that I want to live with these AH forever, but I'm not going to risk a bad start on something on a workday because I don't have sick leave if it goes poorly.  So there's a reason that I sent her a message on a Thursday and followed up on a Friday.

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Posted (edited)

.So I took an extra 2.5mg zyprexa this afternoon.  It didn't seem to do much.  It may be because I took it after the AH had started rather than preemptively.  But they're still around and it's about 2.5 hours later.

We also now have proof that it's not just an at-work problem.  

 

8pm update - they never went away before I took my nighttime meds at 7pm.  Now they're really quiet and hopefully on their way out the door.  I'm strongly considering increasing the fanapt to 12mg in the morning since it started wearing off at 1pm when I took 6mg and at 4pm when I took 9mg.  I hate to take so high a dose (though I think it's half the total max of 24--I just can't do split dosing because it gives me horrible insomnia). 

I really hope my pdoc gets back to me on Monday.  I might get increasingly assertive.

Edited by dancesintherain

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So on Sunday I tried 12 mg of fanapt and it made the AH go away.  So this morning I called and confessed to my two attempts, apologizing profusely but explaining that I couldn’t make it through another week like the last.

the office manager person’s comment was “you tried in writing twice, called when you didn’t get a response, and then we promised to call and didn’t.  Of course you tried something.”

hopefully my pdoc has the same thought pattern.  The manager also said to stick with what works (12 mg fanapt) unless I hear from her or from pdoc that I should do something different.

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I'm glad office manager was supportive.  Good on you for figuring this stuff out.  I hope pdoc gets back to you tomorrow (I'm assuming it's too late now).

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thanks jarn.  I'm also really relieved that she was supportive.  because she's the one who will be in contact with my pdoc going over the situation.  I'm curious about whether pdoc will even get back to me or if she'll just leave it as the default setting that office manager created (stay at 12mg unless I hear otherwise).

Chris noted that 3:30/4 is when a lot of people start to get drowsy at work.  I let him know that I had it happen on the weekend also (on Saturday), so I don't think it's related, but I can try taking a nap on Saturday if I hear them again.

I was trying to get a good description of what they sound like at that time of day (and until I take zyprexa--though interestingly not during therapy).  the best I could come up with is the death heavy metal bands, but no lyrics.  it really feels like they're yelling at me, but musically. 

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