Beth's Keeping Track Post

*Beth* · Mar 07, 2020 at 04:15 PM

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.
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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.

Mar 07, 2020 at 05:19 PM

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!

*Beth* · Mar 08, 2020 at 05:37 AM

Quote:

Originally Posted by bluebicycle

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!

~~~~~~~~~~~~~~~~~

*Beth* · Mar 08, 2020 at 05:43 AM

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! I wish I could say the same. Little by little...

It's all about going off Seroquel. My appetite dropped off almost immediately.

Tucson · Mar 10, 2020 at 01:57 AM

Quote:

Originally Posted by BethRags

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! I wish I could say the same. Little by little...

It's all about going off Seroquel. My appetite dropped off almost immediately.

I find that Primadone works really well for tremor. My doctor learned about this from me. He is even using it on other patients. Latuda is not a placebo. So I would treat it with respect and titrate down. Better yet, I would normally think you should do this under your doctor's supervision. However, if you are having extreme body shaking, I understand why you immediately stopped taking it.

*Beth* · Mar 10, 2020 at 07:36 AM

Tucson, I'm using this thread to keep track of my medication(s) and anxiety levels. Like I posted, it would be helpful if there was a board specifically for threads like this. At this point, there isn't. Doc John has given his approval to post the so-called "me threads."

I appreciate - but do not expect - feedback from friends on this board. I am in desperate need of treating and keeping track of my anxiety levels. A thread like this one is the best way for me to do that.

Moose72 · Mar 07, 2020 at 06:33 PM

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

Quote:

Originally Posted by BethRags

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...

~Christina · Mar 07, 2020 at 07:45 PM

Quote:

Originally Posted by BethRags

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

*Beth* · Mar 08, 2020 at 05:48 AM

Quote:

Originally Posted by ~Christina

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!

*Beth* · Mar 09, 2020 at 05:41 AM

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.

Had a dream that an elevator opened and Mama Cass stepped out and sang to me in her sweet, sweet voice. Highly amusing

*Beth* · Mar 09, 2020 at 06:26 PM

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.

Pookyl · Mar 09, 2020 at 08:49 PM

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.

*Beth* · Mar 10, 2020 at 07:44 AM

Quote:

Originally Posted by Pookyl

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.

Thank you, Pooks.

My night would have been peaceful and restful, save for my neighbor who, at 11:30p.m., discovered that he was locked out of his apartment. Proceeded to knock on the door for the next 1/2 hour. Apparently his room mates didn't want to awaken and bother to let him in, so he just kept knocking.

Just as I was about to place my speakers against the wall and play death metal for my errant neighbors, someone let the jerk in.

*Beth* · Mar 10, 2020 at 06:51 PM

I explained my decision to stop Latuda to pdoc. She seemed pleased, actually - she was not greatly in favor of it to begin with, for some reason.

Told her the anxiety (even to the point of old OCD and panic behaviors) is fierce. She prescribed a med that, she said, has always been "one of her favorites." I've never heard of it. The name is "perphenazine (Trilefon)." Pharm has to order it, so I'll pick it up tomorrow.

Please, please, please.

Oh- lost 16lbs since stopping Seroquhell!

gottagetup · Feb 08, 2021 at 10:12 AM

Hello, sorry to hear about the tremors. I had the same problem with Latuda, it seemed to work but the tremors are not worth it. Hope you find one that works for you. Please keep trying, your worth it.

bizi · Feb 08, 2021 at 10:28 PM

This is hard work that you are doing, you are worthy of this effort.
bizi

Tucson · 03:00 AM

Ah, another "Me too" thread. However, I think this one can prove to be useful., maybe even fun. Please I do not need to know in detail what you ate for each meal I know one other thread that does this all the time. But actually that is OK too. I took Latuda, but it did not work out for me. I think I remember the tremor is bad. This and instability in my physical movement are the two reasons other meds have not worked for me. Also, some meds aggravate my orthostatic hypotension.

~Christina · Mar 10, 2020 at 11:57 PM

Im glad your Pdoc is trying you on another med I hope its "The One"

*Beth* · Mar 11, 2020 at 06:00 AM

Quote:

Originally Posted by ~Christina

Im glad your Pdoc is trying you on another med I hope its "The One"

As always, thank you for your friendship!

*Beth* · Mar 11, 2020 at 06:13 PM

Pdoc starting me on only 2mg. Trilefon; very low. I keep having such sensitivities to med side effects. If this low dose seems to be helpful (or not really noticeable), I do have an appt. with her on Tuesday. We can raise the dose if appropriate.

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gottagetup New Member Member Since Feb 2021 Location: Indiana Posts: 10 3	Feb 08, 2021 at 10:12 AM #15 Hello, sorry to hear about the tremors. I had the same problem with Latuda, it seemed to work but the tremors are not worth it. Hope you find one that works for you. Please keep trying, your worth it.
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bizi Bizi is bizi Member Since Nov 2005 Location: cajun country Posts: 11,014 18 45.8k hugs given	Feb 08, 2021 at 10:28 PM #16 This is hard work that you are doing, you are worthy of this effort. bizi __________________ lamictal 2x a day haldol 2x a day cogentin 2x a day klonipin , 1mg at night, fish oil coq10 multi vit,, vit c, at noon, tumeric, caffeine Remeron at night, zyprexa, requip2-4mg
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~Christina Legendary Wise Elder Community Liaison Member Since Jul 2011 Location: Tennessee Posts: 22,450 (SuperPoster!) 13 12.7k hugs given	Mar 10, 2020 at 11:57 PM #18 Im glad your Pdoc is trying you on another med I hope its "The One" __________________ Helping others gets me out of my own head ~
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Beth catches the flowers Member Since Jul 2019 Location: Downtown Vibes, California Posts: 15,701 (SuperPoster!) 5 23.7k hugs given	Mar 11, 2020 at 06:13 PM #20 Pdoc starting me on only 2mg. Trilefon; very low. I keep having such sensitivities to med side effects. If this low dose seems to be helpful (or not really noticeable), I do have an appt. with her on Tuesday. We can raise the dose if appropriate. __________________
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