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Old 03-07-2020, 04:15 PM   #1
BethRags
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Default Beth's Keeping Track Post

I've decided to post a thread to keep track of meds, etc. I was posting a thread like this for a couple of months, then stopped. However, I find that I'm referring back to that thread for important information.

I know there are some people who are not in favor of these types of threads. It really is too bad that we don't have a specific board for personal threads. I suppose phones have apps or whatever that can do this sort of thing, but I don't use my phone much (I am not talented with technology). Until PC has a board for personal threads the easiest place for me to post is here, on the bipolar board.
------------------------------------------------------------


For 4 to 8 weeks I've been taking Latuda, between 60 and 100mg. To counteract the pretty much full-body tremor I've had to take Cogentin and Propanalol. Neither does jack. In fact, I don't think the Latuda is doing anything helpful, either...definitely not worth the major tremoring.

After thinking it all over I've decided to stop the Latuda. I didn't take it last night or this morning. I don't feel one bit different than I felt on it. Feels like I've been swallowing placebos.

Still some tremor in my hands and jaw. I do not feel like I have to jiggle my leg, though.

Surgery for achilles tendon 1 month from today. Started a fairly in-depth cleaning of apartment yesterday so it'll be nice and clean by April.

Therapist cancelled Thursday's appt. She cancels about 1 out of 10 sessions. She tells me that she sees progress, even though I don't feel it yet.

Lost 13lbs. during February.
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Old 03-07-2020, 05:19 PM   #2
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Default Re: Beth's Keeping Track Post

I personally don't think there is anything wrong with threads like this one. I don't know why people dislike them, but everyone has their preferences.

Anyway, I don't blame you for stopping Latuda. Based on what I've read in this forum over the years, the majority of people say it's either amazing or awful/useless. I haven't found many posts where people say it's "good" or just "okay." It's usually one of the extremes (awful or amazing). But it's possible I have missed some posts.

Good luck with your surgery. I hope it goes well.

Sorry to hear about your therapist cancelling appts. Does she have family emergencies or something?

BTW, congrats on your weight loss!
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Old 03-07-2020, 06:33 PM   #3
Moose72
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Default Re: Beth's Keeping Track Post

Adding this because the program says my message is too short. (Dumb thing.)


Quote:
Originally Posted by BethRags View Post



For 4 to 8 weeks I've been taking Latuda, between 60 and 100mg. To counteract the pretty much full-body tremor I've had to take Cogentin and Propanalol. Neither does jack. In fact, I don't think the Latuda is doing anything helpful, either...definitely not worth the major tremoring.


I've not tried Cogentin, but I agree with you that Propanalol does nothing. What do you mean by full body tremoring? I had something that could be described like that. All of me was shaking really bad and I couldn't stop it. It was worse when I laid down, but it got late and I HAD to try and rest which I finally did, but it wasn't easy! It wasn't from Latuda, though; I forget which drug did that, actually. (i've gone through so many!)



After thinking it all over I've decided to stop the Latuda. I didn't take it last night or this morning. I don't feel one bit different than I felt on it. Feels like I've been swallowing placebos.

Still some tremor in my hands and jaw. I do not feel like I have to jiggle my leg, though.


I felt that way. My hands would tremor for weeks after that initial episode! Of course, pdoc tried propanolol which didn't help. The only thing that really helped was time.



Lost 13lbs. during February.

CONGRATS! I wish I could say the same. Little by little...
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Old 03-07-2020, 07:45 PM   #4
~Christina
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Default Re: Beth's Keeping Track Post

Quote:
Originally Posted by BethRags View Post
I've decided to post a thread to keep track of meds, etc. I was posting a thread like this for a couple of months, then stopped. However, I find that I'm referring back to that thread for important information.

I know there are some people who are not in favor of these types of threads. It really is too bad that we don't have a specific board for personal threads. I suppose phones have apps or whatever that can do this sort of thing, but I don't use my phone much (I am not talented with technology). Until PC has a board for personal threads the easiest place for me to post is here, on the bipolar board.
------------------------------------------------------------


For 4 to 8 weeks I've been taking Latuda, between 60 and 100mg. To counteract the pretty much full-body tremor I've had to take Cogentin and Propanalol. Neither does jack. In fact, I don't think the Latuda is doing anything helpful, either...definitely not worth the major tremoring.

After thinking it all over I've decided to stop the Latuda. I didn't take it last night or this morning. I don't feel one bit different than I felt on it. Feels like I've been swallowing placebos.

Still some tremor in my hands and jaw. I do not feel like I have to jiggle my leg, though.

Surgery for achilles tendon 1 month from today. Started a fairly in-depth cleaning of apartment yesterday so it'll be nice and clean by April.

Therapist cancelled Thursday's appt. She cancels about 1 out of 10 sessions. She tells me that she sees progress, even though I don't feel it yet.

Lost 13lbs. during February.
I want to just give you a bit of info on how I weaned my self off Latuda .. I didnt have the tremor like you do .. but I tried to decease too quickly and I felt a big surge in an on going pretty high anxiety which I knew could certainly be a problem. .. so I slowed my taper.. and I did fine.. but you have to factor in half life and brain back to working sans that med.. I finally felt truly med free from it at about 7-8 weeks..

So its likely you wont have a problem for 5-7 days but eventually it will hit you...

So instead of just dropping it and deal with possible withdrawl right before a major surgery that is going to keep you limited in ability to get around which I can imagine is going to be very long stressful process..

Why not just tell your Pdoc that you truly have given this med a good try but the side effects are not tolerable so .... "we need a new plan" and work together..

Honestly most Pdocs if you approach them with the truth about a med thats not working they will work to try to find something better,,

Good luck in whatever you decide to do
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Old 03-08-2020, 05:37 AM   #5
BethRags
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Default Re: Beth's Keeping Track Post

Quote:
Originally Posted by bluebicycle View Post
I personally don't think there is anything wrong with threads like this one. I don't know why people dislike them, but everyone has their preferences.

Thank you for the encouragement, blue.

Anyway, I don't blame you for stopping Latuda. Based on what I've read in this forum over the years, the majority of people say it's either amazing or awful/useless. I haven't found many posts where people say it's "good" or just "okay." It's usually one of the extremes (awful or amazing). But it's possible I have missed some posts.

You know, I've noticed the same about Latuda. Most people don't like it or find it helpful. So far I feel much better!

Good luck with your surgery. I hope it goes well.

Thanks

Sorry to hear about your therapist cancelling appts. Does she have family emergencies or something?

She says she needs "mental health breaks." She already has 3 day week-ends every other week, in addition to regular week-ends. But she's getting older...I imagine she'll retire in a year or 2.

BTW, congrats on your weight loss!

Thank you! Do you know, I haven't even tried! Stopping Seroquel, my appetite is normal. What a relief!
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Old 03-08-2020, 05:43 AM   #6
BethRags
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Default Re: Beth's Keeping Track Post

For 4 to 8 weeks I've been taking Latuda, between 60 and 100mg. To counteract the pretty much full-body tremor I've had to take Cogentin and Propanalol. Neither does jack. In fact, I don't think the Latuda is doing anything helpful, either...definitely not worth the major tremoring.

I've not tried Cogentin, but I agree with you that Propanalol does nothing. What do you mean by full body tremoring? I had something that could be described like that. All of me was shaking really bad and I couldn't stop it. It was worse when I laid down, but it got late and I HAD to try and rest which I finally did, but it wasn't easy! It wasn't from Latuda, though; I forget which drug did that, actually. (i've gone through so many!)

Yes, you have described it...shaking head to toe. It's very uncomfortable, as you know.

After thinking it all over I've decided to stop the Latuda. I didn't take it last night or this morning. I don't feel one bit different than I felt on it. Feels like I've been swallowing placebos.

Still some tremor in my hands and jaw. I do not feel like I have to jiggle my leg, though.

I felt that way. My hands would tremor for weeks after that initial episode! Of course, pdoc tried propanolol which didn't help. The only thing that really helped was time.

Propanolol seems like a waste. Doesn't do anything at all.

Lost 13lbs. during February.
CONGRATS! Beth's Keeping Track Post I wish I could say the same. Little by little...


It's all about going off Seroquel. My appetite dropped off almost immediately.
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Old 03-08-2020, 05:48 AM   #7
BethRags
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Default Re: Beth's Keeping Track Post

Quote:
Originally Posted by ~Christina View Post
I want to just give you a bit of info on how I weaned my self off Latuda .. I didnt have the tremor like you do .. but I tried to decease too quickly and I felt a big surge in an on going pretty high anxiety which I knew could certainly be a problem. .. so I slowed my taper.. and I did fine.. but you have to factor in half life and brain back to working sans that med.. I finally felt truly med free from it at about 7-8 weeks..

So its likely you wont have a problem for 5-7 days but eventually it will hit you...

So instead of just dropping it and deal with possible withdrawl right before a major surgery that is going to keep you limited in ability to get around which I can imagine is going to be very long stressful process..

Normally, I would never just stop a med. But I've been on Latuda for only 7 weeks. So far no withdrawal...but I will keep in mind your experience.

Why not just tell your Pdoc that you truly have given this med a good try but the side effects are not tolerable so .... "we need a new plan" and work together..

Honestly most Pdocs if you approach them with the truth about a med thats not working they will work to try to find something better,,

Funny thing is, my pdoc didn't like the idea of Latuda. I kept pushing for it. Maybe she has had poor outcomes with it.

Good luck in whatever you decide to do
Thank you!
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Old 03-09-2020, 05:41 AM   #8
BethRags
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Default Re: Beth's Keeping Track Post

I'm feeling remarkably better off Latuda! What is that stuff, anyway...and does it really help anyone?

No Latuda means no Cogentin, no Propanalol. Left hand still tremoring slightly (annoying), but then I always have a degree of hand tremor left over from childhood scarlet fever.

I feel physically alive.

The remaining problem - and it's a major one - is the spinning anxiety. Obsessive to the point of crazy. No med has ever made a dent in it.

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Old 03-09-2020, 06:26 PM   #9
BethRags
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Default Re: Beth's Keeping Track Post

Exhausted and wish I could lie in bed and read and sleep until tomorrow. I would if I didn't have stuff to do. Anxiety is out of control...I think it has to do with facing surgery. Which is strange, because I've had surgery 4 times in my life and I wasn't terribly nervous.

I finally see my T and my pdoc tomorrow. Not that either one ever has any magical solutions, but at least I can talk with them.
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Old 03-09-2020, 08:49 PM   #10
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Default Re: Beth's Keeping Track Post

It’s a shame the Latuda didn’t work out. I’ve also trialled it with no success. It’s understandable that you feel anxious with surgery coming up.
Here’s to a good night of restful sleep.
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