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Default Jun 08, 2024 at 04:43 PM
  #21
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Originally Posted by 16PennyNail View Post
Oh, goodness gracious, I have been hospitalized so often that they joke at the one I am usually in. It is affiliated with a large state university here. They were going to have a PO Box installed. I hope you are okay. If that person is not a doctor or an RN, they should not be telling you about medication side effects. I hope you feel better soon.

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This hospital is one I’d never been admitted to. Just had been in their ER a couple times and then released. I think my case manager is in touch with my psych nurse practitioner all day long except for the weekends like now. No hallucinations since the night before last but I was up until about 4 am that night with them. Took a long nap the next day and today.

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Default Jun 08, 2024 at 04:56 PM
  #22
My discharge paperwork says “You were admitted to the hospital for changes in your thinking and clarity. We think that these changes may have been due to side effects from the combination of medications you have been taking. We would like for you to simplify your medication list by stopping Wellbutrin (bupropion) and propranolol (Inderal). Please continue Invega and Ingrezza at your current doses. Please follow up with your therapist for additional guidance on these medications.”

They said “therapist”. I don’t have a therapist. I assume they meant my Pdoc/Nurse practitioner.

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Last edited by Moose72; Jun 08, 2024 at 05:31 PM..
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Default Jun 08, 2024 at 05:29 PM
  #23
How am I supposed to get through tonight when I slept too much today? A 3 hour nap when I slept in this morning too! Oh I just misread what I just wrote ! I hope I’m not in for another sleepless night.

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Default Jun 08, 2024 at 10:50 PM
  #24
I Can’t sleep. Slept too much today and this medical show I was watching has me anxious. It’s too quiet and I’m wide awake at almost midnight. Help!

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Default Jun 08, 2024 at 11:27 PM
  #25
I can't sleep either.

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Default Jun 10, 2024 at 11:25 AM
  #26
Saw Pdoc. She was like “so you were in. the hospital…”. No ****ing kidding! Is this new news to you just this very moment? She increased my invega to 3 mg to help with the voices. I was feeling spacey on the way back from my appointment driving. Right now I’m cold and in a sweatshirt jeans and under a blanket. I just felt like Pdoc was unprepared for my appointment. Makes me upset.

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Default Jun 10, 2024 at 07:20 PM
  #27
I just took my night meds- including the higher dose of invega- 15 minutes ago. Pdoc said to take it 1 hour before I want to sleep. That was at 8. I haven’t noticed that I get tired an hour after I take it.

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Default Jun 13, 2024 at 12:59 PM
  #28
I texted my case manager about 15 minutes ago that I can’t stand the akathisia so I’m going off the invega. Voices be damned! She hasn’t replied but I don’t expect her to. I also added “that’s if the akathisia isn’t permanent already…”

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Default Jun 13, 2024 at 02:06 PM
  #29
That sucks, @Moose72

🫂

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Default Jun 13, 2024 at 05:50 PM
  #30
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That sucks, @Moose72

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Yeah I know. Case manager got back to me. Said pnurse is running out of ways to fix me. Pray that she can pull a rabbit out of her hat!

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Default Jun 13, 2024 at 11:27 PM
  #31
Have you been on clozaril? I am pretty sure it has a pretty low risk for akathesia or other EPS symptoms and once you get in the routine of blood draws it's a pretty easy med.

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Default Jun 14, 2024 at 09:58 AM
  #32
No no clozaril. I thought it was a last ditch med?

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Default Jun 14, 2024 at 02:54 PM
  #33
I had a rare bad reaction to clozaril. Extreme water retention, swelling, edema in my ankles, respiratory problems.... my psychiatrist said he'd never seen anything like it! And he's pretty much retired right now and July is his last month. Not to mention the DROOLING. I had a DROOL towel at night. Lol. And all the blood draws... ugh. It worked well though. Made me nice and fat and jolly. But was overall a miserable experience for me. Had to abruptly stop it, went through withdrawal, and THAT was a miserable experience... the anxiety! Omg!

Obviously everyone is different though. And like I said, I had a very, VERY rare bad reaction to it. So I think it's worth a shot, if you're running out of options.

What APs have you all tried?

Seroquel?
Prolixin?
Abilify?
Haldol?
Latuda?

I'm trying to think of any others I've tried... Abilify gave me akathisia, Haldol worked great for seven years but then started giving me muscle rigidity and stopped working, and prolixin just worked me up and made me anxious and I hated it. It was like an evil Haldol. I was on latuda for like a day and just remember it making me feel really high. Right now I'm on seroquel, which is working great (no delusions or hallucinations), and 50mg of loxapine, but I know you were just on loxapine and it didn't work out for you.

Anyway, meds are frustrating!

Has your akathisia gone away?

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Default Jun 14, 2024 at 03:03 PM
  #34
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Originally Posted by Moose72 View Post
No no clozaril. I thought it was a last ditch med?

It is but if you're running out of options and especially if you are running out of options that don't cause akathesia/EPS it might be time to consider it. It is annoying the first year to get frequent blood draws but after that time it's just once a month. The main side effects I've had from it are drooling at night and I wear an incontinence pad at night because every so often I sleep too deeply and wake up realizing that I'm peeing. (I have overactive bladder which probably makes this one worse for me than usual). Otherwise it's a little sedating but I've needed other meds for sleep with it so it's not very sedating for me. Weight gain was a problem initially but I started metformin and that controlled it.

I've been on it 8 years and I'm really glad. I don't know if you're there yet but if you're running out of meds it might be worth a shot.

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Default Jun 14, 2024 at 05:03 PM
  #35
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Originally Posted by raspberrytorte View Post
I had a rare bad reaction to clozaril. Extreme water retention, swelling, edema in my ankles, respiratory problems.... my psychiatrist said he'd never seen anything like it! And he's pretty much retired right now and July is his last month. Not to mention the DROOLING. I had a DROOL towel at night. Lol. And all the blood draws... ugh. It worked well though. Made me nice and fat and jolly. But was overall a miserable experience for me. Had to abruptly stop it, went through withdrawal, and THAT was a miserable experience... the anxiety! Omg!

Obviously everyone is different though. And like I said, I had a very, VERY rare bad reaction to it. So I think it's worth a shot, if you're running out of options.

What APs have you all tried?

Seroquel?
Prolixin?
Abilify?
Haldol?
Latuda?

I'm trying to think of any others I've tried... Abilify gave me akathisia, Haldol worked great for seven years but then started giving me muscle rigidity and stopped working, and prolixin just worked me up and made me anxious and I hated it. It was like an evil Haldol. I was on latuda for like a day and just remember it making me feel really high. Right now I'm on seroquel, which is working great (no delusions or hallucinations), and 50mg of loxapine, but I know you were just on loxapine and it didn't work ffocated. out for you.

Anyway, meds are frustrating!

Has your akathisia gone away?
Tried all those plus others except prolixin. Don’t want bad anxiety! Still having. akathisia. I hope my breathing is ok while I’m on my trip. Been having problems with my Cpap. Feeling suffocated.

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Default Jun 15, 2024 at 02:49 AM
  #36
I didn't read all the comments, so excuse me if someone has already said this. But I'm on 3 mgs of invega and it has caused eps symptoms for me as well. When I get anxious, my lip kind of rolls in my mouth and I get horrible tremors.

I'm on 3 mgs of cogentin and 40 mgs of prpinol I spelled that wrong sorry. But they do help. Ubut something that is the most bothersome is the blurred vision from the cogentin causes that.

I stay on it bc it has taken away my period and I have really heavy periods and a lot of cramps. I have a lot going on in my personal life. Hope this helped you!
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Default Jun 16, 2024 at 06:09 PM
  #37
I have completely stopped the invega. Still dealing with TD. It can get bad but last night I slept thank god. Right now I don’t care what Pdoc says about going off. I much prefer the voices!

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Default Jun 16, 2024 at 08:52 PM
  #38
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I have completely stopped the invega. Still dealing with TD. It can get bad but last night I slept thank god. Right now I don’t care what Pdoc says about going off. I much prefer the voices!
Don't blame you, @Moose72. I hope the TD goes away soon!

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Default Jun 17, 2024 at 01:52 PM
  #39
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Don't blame you, @Moose72. I hope the TD goes away soon!
Me too. It still hasn’t. Makes it hard to type and do anything really!

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Default Jun 18, 2024 at 01:53 AM
  #40
I finally broke down and called the after hours line at my Pdoc office. The nurse I spoke to said while the tremors are no fun it’s not and emergency. She contacted my Pdoc, case manager and the RN that works with them. They are supposed to call me tomorrow. The nurse also said that since I haven’t been on the invega that long that the akathesia should reverse itself.

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