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Looking for some current or former users of Vraylar.

I'm so close to being stable it's frustrating that I'm not getting there.  My stalwarts Lithium and Lamictal do most of the heavy lifting from suicidal thoughts to the worst of the depression, but I continued to deal with agitation, dysphoria, late stage insomnia and some anxiety.

I've been trialing medications as adjuncts to my primary meds but I seem to always have issues of tolerability.  Right now, I'm about 5 days into Vraylar and the side effects I'm experiencing is: increased anxiety and agitation, nausea, increased insomnia, sweating, loss of appetite and fatigue (with the insomnia, gee I wonder why?).

Anyone else deal with these side effects?  Did they go away?  Any advice on getting through start up effects would be appreciated.

Want to mention, I can take up to 100mg of Trazodone for sleep (helps me fall asleep, but not stay asleep) and 10mg Diazepam for anxiety, which I've hesitated to take (I'm a bit of a benzophobe).

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If I did have start up issues they resolved quickly. However, I never ended up having luck with Vraylar for insomnia even at higher doses. 

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What dosage are you on?

19 minutes ago, Arj72 said:

Right now, I'm about 5 days into Vraylar and the side effects I'm experiencing is: increased anxiety and agitation, nausea, increased insomnia, sweating, loss of appetite and fatigue (with the insomnia, gee I wonder why?).

I started the 1.5 mg x1 daya then 3 mg titration pack then remained on 3 mg the first time I took it. I also had a little bit of anxiety/agitation, nausea, insomnia, anorexia, and fatigue, but no sweating. These side effects lasted about 1-2 weeks and eventually went away. I lost about 12 lb I think the first few weeks, but immediately gained it back.

21 minutes ago, Arj72 said:

Want to mention, I can take up to 100mg of Trazodone for sleep (helps me fall asleep, but not stay asleep) and 10mg Diazepam for anxiety, which I've hesitated to take (I'm a bit of a benzophobe).

If it were me in your shoes, I would try the trazodone 100 mg for sleep, and maybe even try splitting the 10 mg diazepam for 5 mg at night because it's a long-acting benzo, and it will probably help you stay asleep. If 5 mg doesn't do anything, I'd try the full 10 mg.

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22 minutes ago, mikl_pls said:

What dosage are you on?

I started the 1.5 mg x1 daya then 3 mg titration pack then remained on 3 mg the first time I took it. I also had a little bit of anxiety/agitation, nausea, insomnia, anorexia, and fatigue, but no sweating. These side effects lasted about 1-2 weeks and eventually went away. I lost about 12 lb I think the first few weeks, but immediately gained it back.

If it were me in your shoes, I would try the trazodone 100 mg for sleep, and maybe even try splitting the 10 mg diazepam for 5 mg at night because it's a long-acting benzo, and it will probably help you stay asleep. If 5 mg doesn't do anything, I'd try the full 10 mg.

I'm on 1.5.  Staying on 1.5 for now.  Glad to hear that our similar side effects abated over time.

I think I may have to just take the diazepam to see if it helps with the sleep.  Will try both tonight and will let you know the results.

Thanks!

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2 hours ago, Arj72 said:

I've been trialing medications as adjuncts to my primary meds but I seem to always have issues of tolerability.  Right now, I'm about 5 days into Vraylar and the side effects I'm experiencing is: increased anxiety and agitation, nausea, increased insomnia, sweating, loss of appetite and fatigue (with the insomnia, gee I wonder why?).

I've been taking Vraylar since early September (along with lamotrigine and depakote). The first week or so the nausea was pretty bad, but went away. The agitation and anxiety started for me in the second week, and it was awful, a 10 out of 10. If I had more than one cup of coffee I was jumping out of my skin. I managed to mostly control it by cutting down on coffee and using klonopin. Over time, it has gotten significantly better than in the beginning, probably after a month or so, though I still have a lot of anxiety (but also a lot of anxiety-making stuff in my life). Much less agitation though. Honestly I can't tell you how much the anxiety I have currently is the Vraylar and how much is what's going in my life. But it definitely improved, and my mood turned around almost immediately. I hope it gets better for you.

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4 hours ago, Arj72 said:

I'm on 1.5.  Staying on 1.5 for now.  Glad to hear that our similar side effects abated over time.

I think I may have to just take the diazepam to see if it helps with the sleep.  Will try both tonight and will let you know the results.

Thanks!

Yeah, pdocs are starting to keep people on 1.5 mg longer rather than do 1 day of 1.5 mg then 3 mg as is indicated for bipolar regardless of indication. I don't blame them. It's rather activating.

Good luck with the diazepam! I'm glad I could be of help! I hope the Vraylar works for you!

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16 hours ago, Arj72 said:

Looking for some current or former users of Vraylar.

I'm so close to being stable it's frustrating that I'm not getting there.  My stalwarts Lithium and Lamictal do most of the heavy lifting from suicidal thoughts to the worst of the depression, but I continued to deal with agitation, dysphoria, late stage insomnia and some anxiety.

I've been trialing medications as adjuncts to my primary meds but I seem to always have issues of tolerability.  Right now, I'm about 5 days into Vraylar and the side effects I'm experiencing is: increased anxiety and agitation, nausea, increased insomnia, sweating, loss of appetite and fatigue (with the insomnia, gee I wonder why?).

Anyone else deal with these side effects?  Did they go away?  Any advice on getting through start up effects would be appreciated.

Want to mention, I can take up to 100mg of Trazodone for sleep (helps me fall asleep, but not stay asleep) and 10mg Diazepam for anxiety, which I've hesitated to take (I'm a bit of a benzophobe).

I trialed vraylar last May. It was absolutely the worst AAP I’ve ever tried. And usually I do so well with AAP’s. I don’t want to scare you but this is my experience.

I took 3 mg for a good month then a handful of doses of 6 mg which was my target dose. I took vraylar for a total of around 6 weeks. I had to stop it on my own which I never do. But I couldn’t stand it anymore.

I was having non stop diarrhea, nausea all day, could hardly eat because my stomach always hurt (I lost like 15 lbs during my course on it) increased anxiety from hell, I’d cry at the drop of a hat, I couldn’t sleep (insomnia, which was leading me into hypomanic territory), and to make it all worse because of the extra long half life.....it stays in your system for a very long time after you stop it! So I continued to have all of these awful issues/side effects for a long while after I stopped taking vraylar even!

I now take rexulti, zyprexa zydis, and Abilify. I am doing better than before. I tried vraylar after I had a paradoxical reaction to clozapine and had to stop clozapine. 

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18 hours ago, mikl_pls said:

Yeah, pdocs are starting to keep people on 1.5 mg longer rather than do 1 day of 1.5 mg then 3 mg as is indicated for bipolar regardless of indication. I don't blame them. It's rather activating.

Good luck with the diazepam! I'm glad I could be of help! I hope the Vraylar works for you!

Just an update.  I took 5mg diazepam with 100mg Trazodone and slept (albeit lightly) through most of the night.  It was bliss.  Still dealing with some anxiety today though but the better sleep has improved my overall well being.  Thanks for the tip.

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Update: I'm still on Vraylar 1.5mg.  Been 8 days now.  Side effects are improving slowly.  Still feel mildly anxious, but what's really bothering me is the fatigue.  I just feel like a big weight is hanging off of me all the time and all I want to do is lie down.  I don't of course, as I have to work, but damn the urge is real.  I have noticed that while I'm not "depressed" at this time, I am fairly flat.  I know meds don't magically make you happy, but I was hoping that as the depression lifted, I'd feel a little more positive.  Is this flatness possibly the med?  If it is, will it go away?  Otherwise, I fell it might be mood related, but I swear I had more of an ability to feel happy prior to the Vraylar, as little as it was.  I do see emotion peek through at times.  I was watching a recording of some documentary about people living with prader-willi syndrome and I found myself inappropriately tearing up.  I was just thinking why the hell am I tearing up?  This isn't sad.... any way.  Just thought I'd update.

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Before Vraylar, I had a completely unpredictable sleep schedule/cycle, with insomnia and trouble waking up. On Vraylar, I can't sleep past 7am, and my sleep schedule close to like clockwork. I do feel fatigued, but with my medications that's to be expected.

It may have caused increased anxiety, which I may have improved by taking magnesium glycinate supplements.

I haven't noticed it making me feel flat, or having less of an ability to feel positive emotions.

 

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On 1/29/2020 at 5:45 PM, Arj72 said:

Just an update.  I took 5mg diazepam with 100mg Trazodone and slept (albeit lightly) through most of the night.  It was bliss.  Still dealing with some anxiety today though but the better sleep has improved my overall well being.  Thanks for the tip.

Glad to hear it! Perhaps 5 mg in the morning too would help quell the anxiety. Diazepam is really meant to be taken around the clock rather than prn. Glad it helped!

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23 hours ago, Arj72 said:

Update: I'm still on Vraylar 1.5mg.  Been 8 days now.  Side effects are improving slowly.  Still feel mildly anxious, but what's really bothering me is the fatigue.  I just feel like a big weight is hanging off of me all the time and all I want to do is lie down.  I don't of course, as I have to work, but damn the urge is real.  I have noticed that while I'm not "depressed" at this time, I am fairly flat.  I know meds don't magically make you happy, but I was hoping that as the depression lifted, I'd feel a little more positive.  Is this flatness possibly the med?  If it is, will it go away?  Otherwise, I fell it might be mood related, but I swear I had more of an ability to feel happy prior to the Vraylar, as little as it was.  I do see emotion peek through at times.  I was watching a recording of some documentary about people living with prader-willi syndrome and I found myself inappropriately tearing up.  I was just thinking why the hell am I tearing up?  This isn't sad.... any way.  Just thought I'd update.

I had the weighed down feeling too, but it apparently wasn't nearly as severe as it is for you. I too had the blunted affect, which was one of the reasons why I got off Vraylar both times I was on it. It helped me a little with depression, but my mood was really flat. I quit Vraylar cold-turkey at 4.5 mg and started Abilify 10 mg recently and I'm starting to gain my emotions back. Abilify made me rather flat too, but not as flat as Vraylar. Lesser of two evils I guess. I'd like to get back on Latuda, the first AAP I tried. It seemed to really help me without blunting my affect. In fact, my emotions seemed more fluid and stable rather than janky and unstable like before I was on AAPs. It was the most fluid and stabilizing AAP I have been on, but it didn't really help my depression all that much after a while of taking it. Perhaps I just needed a higher dose than 40 mg, but after the akathisia bout I had on it (tardive akathisia I think), I was too scared to take it anymore for a while.

5 hours ago, 0112358 said:

It may have caused increased anxiety, which I may have improved by taking magnesium glycinate supplements.

After what @Sephiroth999 told me in a PM about magnesium, and some research I did, I think almost everyone with an affective disorder should be taking magnesium glycinate or magnesium taurinate.

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Came down with a sinus infection this weekend that just obliterated my sleep (tooth and sinus pain made it unbearable to lie down and I got just a couple hours sleep over a period of a couple of days.  Stinks that with the lithium, my only option is Tylenol, but it helped a bit (naproxen was my go to prior to Li).  Got some antibiotics yesterday and took my third dose this morning.  Doubled my traz and actually slept pretty decent last night all things considered.  The only thing is that my BP symptoms seems to be out of whack.  Anyone else seem to get an exacerbation of symptoms when they're sick?  Mine seems to be a mild return of depression along with some anxiety that had largely gone before this recent bout of sinusitis.

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39 minutes ago, Arj72 said:

Came down with a sinus infection this weekend that just obliterated my sleep (tooth and sinus pain made it unbearable to lie down and I got just a couple hours sleep over a period of a couple of days.  Stinks that with the lithium, my only option is Tylenol, but it helped a bit (naproxen was my go to prior to Li).  Got some antibiotics yesterday and took my third dose this morning.  Doubled my traz and actually slept pretty decent last night all things considered.  The only thing is that my BP symptoms seems to be out of whack.  Anyone else seem to get an exacerbation of symptoms when they're sick?  Mine seems to be a mild return of depression along with some anxiety that had largely gone before this recent bout of sinusitis.

There's a theory that depression is worsened by increased inflammatory markers in your body, like when you're sick. There's actually a theory that depression (and bipolar) are inflammatory diseases, which could be why some antibiotics (minocycline) have antidepressant effects.

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For anyone following or seeking an answer to this question in the future.  Day 16: got a great night of sleep in just 50mg Trazodone and the anxiety is going down rapidly.  Glad I stuck it out.  Praying the good vibes continue.

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1 hour ago, Arj72 said:

For anyone following or seeking an answer to this question in the future.  Day 16: got a great night of sleep in just 50mg Trazodone and the anxiety is going down rapidly.  Glad I stuck it out.  Praying the good vibes continue.

So glad to hear it! You have more perseverance than me, I would've probably dropped it before it had a chance to subside. Bully for you! 😄 

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Spoke too soon.  After my last post, I have had two of my worst nights of sleep since starting Vraylar.  I’ll fall asleep, wake up 30 minutes later restless and anxious, pace for 5 minutes, fall asleep, lather, rinse, repeat.  I emailed my pdoc as I’m afraid it might be akathisia.  Surprised it’s hitting this late in the game although I’ve read it might be due to the long half life (delayed side effects).  However, I’m very concerned that I’m not tired.  Could I be heading into hypo territory?   I was staring at my bottle of Zyprexa last night that’s meant for emergencies but wasn’t sure if I could take both the Vraylar and Zyprexa together.  Anyone do that before?

crossing my fingers that pdoc gets back to me soon.

Edited by Arj72

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2 hours ago, Arj72 said:

Spoke too soon.  After my last post, I have had two of my worst nights of sleep since starting Vraylar.  I’ll fall asleep, wake up 30 minutes later restless and anxious, pace for 5 minutes, fall asleep, lather, rinse, repeat.

Uh oh... Some people have this problem with Vraylar, unfortunately... I think this happened to @THE_REAL_Bryan, my best friend on 1.5 mg within just a few days.

2 hours ago, Arj72 said:

I emailed my pdoc as I’m afraid it might be akathisia.  Surprised it’s hitting this late in the game although I’ve read it might be due to the long half life (delayed side effects).

This is very possible! Vraylar is very prone to tardive EPS, tardive akathisia included. I had "tardive RLS" symptoms that started late into my taking Vraylar at 3 mg the first time I took it. Then at 4.5 mg the first time, almost immediately, akathisia from hell came up, which is surprising given the super long half-life. The second go around with it, I never had any EPS, I guess because my brain's dopamine receptors have just been blocked/partially agonized for so long it has permanently altered my brain chemistry/structure/receptors. I think Abilifty reeeeally fucked me over big time all times I took it. I haven't been the same since taking it the first time. Worked really well the first month then endless, constant depression that has yet to remit except for about two years ago, for a year and a half I felt pretty decent most of the time with the exception of impulse control problems being exacerbated and accruing massive amounts of debt (after paying it all off several times). I digress...

2 hours ago, Arj72 said:

Could I be heading into hypo territory?

I can't say for sure... 

2 hours ago, Arj72 said:

I was staring at my bottle of Zyprexa last night that’s meant for emergencies but wasn’t sure if I could take both the Vraylar and Zyprexa together.

...but Zyprexa could've helped with its potent 5-HT2A antagonism, anticholinergic effects, and H1 histamine antagonism (sedating, relaxing, and anticholinergic [think Cogentin for akathisia]). It is definitely possible to take both together, especially if the Zyprexa is prn, but I'm not a doctor and cannot tell you how to take your medicine—whether you decide to try that is entirely up to you. I used to take Saphris with Abilify the first time I took them both, and Seroquel (basically a glorified antihistamine at hypnotic doses that I was taking it at) with Abilify and then Vraylar recently.

2 hours ago, Arj72 said:

Anyone do that before?

Forgot to include this in the last post. Yes. I have taken this combo before for acute hypomania/mania and I haven't had any problems.

It was instructed for me to do so if needed, so it wasn't like I was playing with my meds like I'm wont to do.

2 hours ago, Arj72 said:

crossing my fingers that pdoc gets back to me soon.

Me too. Keep us posted. Good luck!

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2 hours ago, mikl_pls said:

Uh oh... Some people have this problem with Vraylar, unfortunately... I think this happened to @THE_REAL_Bryan, my best friend on 1.5 mg within just a few days.

This is very possible! Vraylar is very prone to tardive EPS, tardive akathisia included. I had "tardive RLS" symptoms that started late into my taking Vraylar at 3 mg the first time I took it. Then at 4.5 mg the first time, almost immediately, akathisia from hell came up, which is surprising given the super long half-life. The second go around with it, I never had any EPS, I guess because my brain's dopamine receptors have just been blocked/partially agonized for so long it has permanently altered my brain chemistry/structure/receptors. I think Abilifty reeeeally fucked me over big time all times I took it. I haven't been the same since taking it the first time. Worked really well the first month then endless, constant depression that has yet to remit except for about two years ago, for a year and a half I felt pretty decent most of the time with the exception of impulse control problems being exacerbated and accruing massive amounts of debt (after paying it all off several times). I digress...

I can't say for sure... 

...but Zyprexa could've helped with its potent 5-HT2A antagonism, anticholinergic effects, and H1 histamine antagonism (sedating, relaxing, and anticholinergic [think Cogentin for akathisia]). It is definitely possible to take both together, especially if the Zyprexa is prn, but I'm not a doctor and cannot tell you how to take your medicine—whether you decide to try that is entirely up to you. I used to take Saphris with Abilify the first time I took them both, and Seroquel (basically a glorified antihistamine at hypnotic doses that I was taking it at) with Abilify and then Vraylar recently.

Forgot to include this in the last post. Yes. I have taken this combo before for acute hypomania/mania and I haven't had any problems.

It was instructed for me to do so if needed, so it wasn't like I was playing with my meds like I'm wont to do.

Me too. Keep us posted. Good luck!

I think I'll take the Zyprexa tonight even if I don't hear back from my pdoc (I think he's on vacation.... he mentioned it but not sure of the dates),  Will deal with any ramifications after that if there are any (beg forgiveness vs ask permission).  My pdoc knows I'm pretty responsible with my meds.

The question still remains though, if I should continue to truck on with the Vraylar.

Right now, I don't have the restlessness/anxiety that I had at 3 this morning but I certainly feel on edge, just like when I started the Vraylar.  I had a total of 1 day respite, and now this.  Can't they just make a diet Zyprexa lite? :D 

Edited by Arj72

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