49 posts in this topic

First of all - sorry for the formatting problems that follow; I have no idea what's going on.  Everything appears fine until I hit 'submit'.

Thanks for the links, @melissaw72.  I have seen the People's Pharmacy article but wasn't sure it was a comprehensive list.  I need to look at the other link - I appreciate the information.  If the Trintellix isn't working well for my anxiety I may ask about Lexapro.

@heilmania and @melissaw72 - yes - I agree - the Klonopin is more to aid my anxiety rather than to make me sleep.  However, I was really concerned that my anxiety could break through the 25mg of Seroquel.  I would have thought that going from .5mg Klonopin (for many years) to 1.25mg would have tempered my anxiety enough so that I would sleep through the 25mg of Seroquel.  When I awoke, again, at about 3:30 panicking (and this is NOT an "attack"; it's anxiety that doesn't go away) I was really disturbed.  Since then and until I can get into my pdoc, I am taking 25mg of IR Seroquel and about .15mg (a third of a tablet) of ER Seroquel.  That is working for now.                                                                                                                                                                                                                                                                                          @on-the-vergeThank you for your encouraging words and your recommendations.  Believe it or not, I have also tried Propranolol.  It DOES help with my racing heart, but unfortunately the anxious thoughts are still there and don't allow me to sleep.  I thought for sure it would work but I guess the underlying anxiety/worry/fear doesn't go away.

                                                                                                                                                                                                                                                                        @Icebergthanks.  I do wonder if I am at a point where I need a different Benzo.  I will ask my pdoc if that's an option.  And can I ask...how long have the 2mg Xanax or 2mg Klonopin worked for you?  I am just shocked that almost tripling my Klonopin dose (.5 to 1.25) didn't work!!  Also do you know if Trazadone helps you fall asleep and STAY asleep?                                                                                                                                                                                                                                                                    

@Butterflykisses, Thanks for the advice.  It looks like, for now, somewhere between 25 & 50mg of Seroquel is what works....for now.   But I know my pdoc doesn't want me on Seroquel long term .. not sure why.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 This whole thing is just extremely frustrating.  If I get enough sleep I don't panic.  If I wake up at night for whatever reason I start panicking thinking I won't be able to get back to sleep.  Obviously the panic stops me from sleeping and then I am extremely anxious all day/night again until I do actually sleep AND perceive that my sleep will continue.  If something is going to be different in my routine (i.e., I have to get up really early the next day; I'm going out of town; I have something really important that I need to function for the next day) I will start to panic at night, then I won't sleep, then I will be anxious until I DO sleep perhaps days later.  It's completely mental (although the anxiety is very excruciatingly physical and is mental and physical torture).  I honestly think anxiety is one of the worst illnesses around.  I'm not talking a little stress and worry; I'm talking about the mental illness of anxiety.  I can't imagine what people did before these drugs came out.  Makes me sick for them.

Edited by nervousnellie

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Trazodone half life is 7-10 hrs I I would think it could mantaining sleep. I mentioned Valium because sometimes people feel that that is the most hypnotic one...also can act faster than klonipin.  The thing I've found tho is that when you wait until symptoms get really bad before upping the benzo it can be too little too late which might be why 1.25 isn't don't the trick 

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Also, (sorry not trying to rant) Could the trintellix be making it worse?  I kno that many ADs make it tough to sleep for some. Could you talk to your doc about something more sedating? 

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1 hour ago, nervousnellie said:

I am taking 25mg of IR Seroquel and about .15mg (a third of a tablet) of ER Seroquel.  

When you cut an ER med (any one) you might not be getting 0.15 mg ... the dose could be anything.

Here is a quick read article:

http://www.everwell.com/consumer_tips/pill_splitting.php

Quote

Extended-release pills, like calcium channel blockers, can't be cut up because the tablet casing itself is thing that makes its slow-release system tick. One handy way to determine if your medicine is a candidate for splitting is this, check out its name.

If it ends with SR, ER, XL or CD— it's mostly likely a time-release medication. And those initials are telling you it's probably a NO-NO to split.

---------------

http://www.webmd.com/healthy-aging/guide-to-pill-splitting#2

Quote

Pills Not Suited for Splitting

If a pill has any of these features, don’t try to cut it in half:

  • A hard outer coat: Splitting a coated pill can make it harder to swallow and may change the way your body absorbs the medicine.
  • They’re extended release: Pills formulated to give you medication slowly throughout the day may lose this capability if split in half.
  • They’re capsules: Because they contain powder or gel, capsules have to be taken whole.
  • A small or uneven shape: Some pills are just too difficult to split evenly.

 

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@Iceberg Sorry one more thing:  does the Trazodone take time to build up in your system or work right away?  Could it be used on an as-needed basis?  Thanks for that info.  That sounds promising if this continues.  And that's a really good point about letting the anxiety get out of hand before upping the Klonopin.  That could be what happened, except I did start increasing the Klonopin as a precautionary measure as soon as I started on the Trintellix.  Still, gives me hope that maybe I haven't developed a tolerance to it.  I suppose I should say - the 1.25 still helps a bit.  When this first happened to me years ago, and also when I had a recurrence 2 years ago, on only the .5mg Klonopin I was pretty dysfunctional.  I just wanted to curl up in a ball and hide.  This time around, although I'm far too anxious to sleep (before I upped the Seroquel), I can at least sort of function during the day if I force myself, albeit with a horrible nervous feeling all....day....long, not to mention the exhaustion.   As far as Trintellix making me not sleep well...it's not supposed to have that side effect BUT I have read on some forums that it can.  It's just so hard for me to differentiate between normal insomnia that could be caused by the Trintellix (which could go away over time) vs. insomnia caused by anxiety.  Which is what I really have.  I normally do not have any problems sleeping until the darn anxiety hits and then all bets are off.  I just feel like once a person panics in a given situation it's bound to happen again.  My "situation" is at night and it's not a "panic attack" but horrendous, non-stop anxiety.  I need to just tell myself that if need be, I'll go on Trazodone or another.  And maybe telling myself that will be part of the CBT process if I continue it.  I don't know.

And @melissaw72 thanks once again.  I do know that's the deal with XR meds.  For some odd reason, though, when my pdoc gave me these XR tablets (they are samples) 2 years ago he directed me to take 1/2 (so that was 25mg then) and I specifically remember that he mentioned that it didn't matter in this case that they were XR.  I have no idea why and will ask him next week because I'm curious.

Thank you everyone.  You are all so helpful and I'm feeling so much less alone.  My close friends are really nice but simply can't relate.  Lucky them.

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Typically it's an every night thing (I think) but they use very low doses

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They can also use super low doses of TCAs...such as Silenor Which is mini dose doxepin 

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Doxepin comes in  3 and 6 mg doses (at least it is listed in the Orange Book), just like Silenor, so don't pay for a brand just to get low doses. 50 mg was the lowest I used for sleep.

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I. Was just making an example not advocating getting the brand 

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Thank you again, so much, @Iceberg and @notloki.  The more tools I have in my arsenal the less anxious I feel about sleep.  Although I did see that Doxepin/Silenor was on that darn People's Pharmacy list of anticholinergic meds....  maybe not in doses that would help a person sleep??

I've been weaning myself off of the Seroquel (down to 12.5mg) because I have an appointment with my pdoc this week and I need to be able to tell him whether or not I'm panicking.  Again, I only panic when I'm not sleeping (then all the following days/nights).  The good news is that I've been up in the middle of the night the past couple nights and the anxiety did NOT come back.  I was awake for maybe 20-30 minutes like a normal person and just fell back to sleep.  I didn't get my normal conditioned response of horrendous panic which leads to no sleep.  I am cautiously optimistic that the Trintellix may have started working a bit.  My pdoc said that Trintellix usually starts working ON ANXIETY after about 4 weeks on a therapeutic dose (I THINK it works earlier on depression).  I've been on 10mg (a therapeutic dose for some) for just over 3 weeks.  Some of you may mention that Trintellix hasn't been proven to work on anxiety, and I have read about that.  I mentioned this to my pdoc and he had a reason that I don't recall exactly.  I guess I didn't care because I feel like he REALLY knows his stuff and he's had many patients be helped with Trintellix for high anxiety.

I did feel a lift in this depressive cloud I had much earlier with Trintellix, but the anxiety hadn't been touched until the last two nights.  

Fingers crossed.  You all have been so helpful.  I'll post again with updates.

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Every med has some sort of stigma...I would be careful saying Thai antichol. Meds are evil. It sucks but all psych meds have issues no matter. What system they hit

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@Iceberg agreed.  It's a matter of the lesser of all the evils.  And they also say that lack of sleep possibly increases risk of dementia so there you have it :)

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Just an update:  I seem to be doing better with the anxiety.  This could be due to a few factors:  1) It's been close to 4 weeks on a therapeutic, albeit low dose (10mg) of Trintellix.  This is about when my pdoc said it would start helping with anxiety (the anxiety may have been helped even slightly earlier); and/or 2) Part of the time that I was having my HIGH anxiety I was travelling and when I travel I get anxious about sleep, so this may have contributed.  Still, I've been waking up at night at home and that's usually when my panic starts (whether I'm home or travelling) and I've been able to lie in bed and just wait in a fairly relaxed state; and/or 3) I'm still on 1.25mg Klonopin, maybe that is helping some (even though it didn't seem to help much when travelling); and/or 4)All of your sleep med advice may have made me realize I WILL be able to find sleep which lessened my anxiety.

I guess I won't know if the Trintellix is REALLY helping until I travel again AND go back down on the Klonopin, but my gut feeling is that the Trintellix is helping because I don't even start to get anxious.  It's just a completely different feeling.  My panic doesn't just don't go from 0 to 60 upon waking in the middle of the night like I did before starting this med.

Just posting this for anyone interested, especially in Trintellix.  I DO have nausea with it (common) but my pdoc is optimistic that it still may go away.  Taking a ginger capsule at the same time as my Trintellix helps sometimes, and taking it while I eat helps a bit as well.

I'll post again in a bit.  Thank you immensely to all who have helped.  

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10 hours ago, nervousnellie said:

I'm still on 1.25mg Klonopin, maybe that is helping some (even though it didn't seem to help much when travelling);

It still may very well be working ... IME, I went off klonopin (pdoc ok) and a few days later I ran into holy hell.  It was then when I realized that I did need the klonopin, and went back on it without a problem. 

So if you don't think the klonopin is working, ask pdoc to wean off, and if ok, wean off of it slowly, then see how you feel in a few days (it took me 3-4 days until I felt crappy, before I restarted). 

If you feel ok after a few days, then perhaps you don't need it.  But if/when you feel the slightest bit not yourself (for me, agitated, irritable, wanting to throw a fit and scream at a person, etc), I would personally go back on it.  At that point you'll know if it was working or not.

Or maybe you just need a lower dose of Klonopin, not go off all of it.

For me at least, I wouldn't have known it was working for me if it wasn't for going off of it to test it.

I would talk to your pdoc about wanting to wean off of klonopin.

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On 2/25/2017 at 8:19 PM, nervousnellie said:

Thank you again, so much, @Iceberg and @notloki.  The more tools I have in my arsenal the less anxious I feel about sleep.  Although I did see that Doxepin/Silenor was on that darn People's Pharmacy list of anticholinergic meds....  maybe not in doses that would help a person sleep??

 

First, poor us!  I have sleep issues, too...mainly not being able to go to sleep until like 3-4 AM and then not being able to wake up until late. And if I don't get my 8 hours good sleep I feel like crud. It's really frustrating.  Then if I finally do get a good nights sleep and have a good day next day, I'm so excited I don't feel like going to sleep early again that evening which might get me on a normal schedule.  And so it goes.

Sleep issues can be so difficult to deal with. Ugh.

I hope you find some combination soon that works.  For me, Trazodone is good for sleep. I also have taken Benadryl on occasion, but maybe I should stop that.

I just noticed that you said the Trintillex seemed to be helping.  Good to hear. I've never been on that one..I"ll have to read up. 

I would add to what the previous poster said and say ask your MD about quitting any med or even changing doseage.  Otherwise it's hard to tell what is making the change.  Plus, you should just do what your MD PDOC says, IMHO.

Good luck and I hope the good news continues.

 

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Not familiar with Trintillex but it does sound like it's working. Glad to know.

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Thanks, @melissaw72.  Oh yes, there is NO doubt in my mind that the 1.25mg of Klonopin is doing SOMETHING.  Without it I don't think I would have been able to even function when my anxiety was at its peak a couple weeks ago while out of town (I see you have an anxiety disorder in your signature so I'm sure you understand how dysfunctional one can be when anxiety is at a peak.  It is the worst).  What I can't figure out now is, why was I panicking while on that dose a couple weeks ago but NOW, on the same dose, I'm not panicking/having high anxiety?  Is it just because I was travelling and now I'm not?  I typically panic whenever I wake up in the middle of the night whether I'm travelling or not but as of now I'm not freaking out even though I am up a bit at night.  Maybe I'm just hoping that the Trintellix has kicked in......

My plan over the next months, assuming I remain stable, is to taper the Klonopin down very slowly while staying on the Trintellix (probably not off, but down to the .5mg I've been on for over a decade).  I have to travel again in a couple months.  If I am able to make it through that trip without anxiety (even if I don't sleep perfectly), then I'll attribute it to the Trintellix working.  If not then back to the drawing board.  Pristiq was the other option my pdoc wanted me to try, but I would really need to understand his thinking in using something with norepinephrine to treat someone with severe anxiety.

@on-the-verge Trintellix (used to be called Brintellix) is pretty new.  Many people haven't heard about it.  It's supposed to be very successful in treating depression but it's not yet proven for anxiety, though my pdoc has had good success with it in treating anxiety.  It is supposed to cause fewer sexual and weight-gain side effects than SSRI's (it's not exactly an SSRI but similar).  It does cause nausea in a lot of patients, myself included, but for now I feel like I can manage it (especially with ginger capsules although they don't help EVERY time for some reason).  The very unfortunate thing about it is that there is no generic available and the patent won't expire for years.  Without insurance the price is exorbitant - like $200-$300 a month!!!!  Makes me so mad (thankfully I have insurance, but so many don't or aren't covered for meds).  

And thx, @CeruleanBlue.  Trazodone is definitely at the top of my list if I need sleep meds!!

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26 minutes ago, nervousnellie said:

(I see you have an anxiety disorder in your signature so I'm sure you understand how dysfunctional one can be when anxiety is at a peak.  It is the worst).  

You're right.  I do know and understand completely what you are talking about.

28 minutes ago, nervousnellie said:

why was I panicking while on that dose a couple weeks ago but NOW, on the same dose, I'm not panicking/having high anxiety?  Is it just because I was travelling and now I'm not?  I typically panic whenever I wake up in the middle of the night whether I'm travelling or not but as of now I'm not freaking out even though I am up a bit at night.  Maybe I'm just hoping that the Trintellix has kicked in......

(bold #1)  I'm guessing it is because both of the times the anxiety was affecting you more than the other.  So being on that dose a couple weeks ago compared to now, I think it is the level of anxiety that makes the difference.  Maybe now you are less anxious than a couple weeks ago?

Traveling can definitely cause anxiety in some people (I don't travel much, but when I do my anxiety level is high until I get back home).

(bold #2)  That is great to hear ... I hope it stays this way!

 

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Posted (edited)

I wanted to post an update in case anyone is interested in Trintellix.

I am currently on 12.5mg Trintellix (a weird dose - long story; I may go up to 15 or down to 10).  I am also still on 1mg Klonopin/day (in the evening because my anxiety is sleep-related).  I am feeling really good.  I have little to no "abnormal" anxiety; just normal stuff (and even that seems much better).  If/when I wake up at night I don't panic like I was and I go right back to sleep.  I am also feeling a lot more optimistic about a lot of things in my life.  In a nutshell, this drug seems to be working.  I'm sure the Klonopin is also helping, but a few weeks ago early in the Trintellix treatment, I was also on 1.25 mg Klonopin and was still having bad anxiety, so I'm pretty sure the Trintellix has kicked in.  My plan is to go down to the .5 mg Klonopin (VERY slowly) that I was on for years before this recent anxiety/panic episode.  I would even love to taper off of that .5 long-term, but I'm not sure that's possible or the right thing for me.

Although Trintellix hasn't been approved for treating anxiety, my pdoc thinks it's a matter of time.  I'm still a bit confused about why some studies are saying it doesn't have an impact on anxiety; my pdoc explained that there was something not quite reliable about these studies, and I just don't recall the specifics.  It definitely seems to work on MY anxiety, and my pdoc has said he has many patients successfully taking it for anxiety.

I do still have a slight bit of nausea with the drug, just sometimes.  I can't quite pinpoint why I have it some days and not others.  I take it after dinner, and at this point it does not affect my sleep (I've read others who say it does cause them insomnia; perhaps this is earlier in treatment or they may just react differently than I.

This drug is EXPENSIVE.  Make sure you check with your insurance company before you even consider it.  And ask your pdoc for a coupon and samples.  If he/she doesn't have a coupon, look online.  It saves you a lot of money, at least at the beginning.

Let me know if you have any questions, and thank you to everyone who helped me out during this very horrible time. 

Oh, and by the way I traveled a couple weeks ago which is usually a trigger for me and had absolutely no problem.  Didn't even take the Seroquel that I have had to take in the past.

Edited by nervousnellie
added info

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On 2/18/2017 at 4:50 AM, nervousnellie said:

Thank you so much once again, @CrazyRedhead.  One more (hopefully last) question:  what precipitated your insomnia?  We're you just a not-so-great sleeper or were you a great sleeper but became anxious about sleep (or something else) and THEN got insomnia?  The reason I ask is that I'm trying to figure out if I should ask to be treated primarily for anxiety (which I have) OR insomnia.  In the past treatment for anxiety had fixed (for about 10 years) my sleep anxiety=insomnia.  I'd rather not go on sleep meds forever if I don't have to but right now even 1.25mg Klonopin plus 12.5mg Seroquel didn't help me sleep much better last night.  So I'm freaked out that going from .5 to 1.25mg Klono pin isn't helping!! Never in my life would I have thought I'd need a sleep med; that how easy sleep was for me. But if anxiety meds don't cut it maybe I do.

First off, I'm glad you're feeling better. I just wanted to chime in and say that it's the anxiety that is the underlying problem. (Which I think you've figured out)  So that has to be solved to get back to normal sleep.  However, not getting enough sleep can make the anxiety worse and harder to combat, so I think it is appropriate to treat the insomnia too.

So this all happened while you were traveling, and it's better now that you're not?  It sounds like something about the traveling is triggering your anxiety.  I would mentally try to figure out what that is and how to combat it on your next trip.

As for your nausea, look at if it's happening on an empty or full stomach; and if it's a full stomach, what kind of food did you eat?  Drinking a small amount of milk when you take it can help.  I have a friend who could only take one of her meds on an empty stomach with milk.

Another thing you can do is to boil some peeled and chopped ginger root & a cinnamon stick in water for 20mins, strain, cool, and then either drink it straight or mixed with something. (I like sweet tea with lemon)  You only need to drink about 1/4 cup.  So you just make a batch and store it in the fridge.  The anti-nausea effect is actually pretty on par with Zofran.

Doxepin is also a good idea.  You can actually get it in liquid form, so you can control the dose.  The doctor that did my sleep study tried it with me.  I'm thinking you could get it, try it out to see how you respond, and then have it on hand when you travel just in case.  It is something you can just take as needed.  I've found that just having the ability to stop/treat something helps with my anxiety (or whatever else).  It gives me a sense of control and lets me have a better mental mindset.

If you don't want Doxepin, that's fine; but, I would recommend having some medication plan in place for if it comes back when you travel.

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On 2/23/2017 at 3:44 PM, Iceberg said:

Trazodone half life is 7-10 hrs I I would think it could mantaining sleep. I mentioned Valium because sometimes people feel that that is the most hypnotic one...also can act faster than klonipin.  The thing I've found tho is that when you wait until symptoms get really bad before upping the benzo it can be too little too late which might be why 1.25 isn't don't the trick 

I would give a thumbs up to Valium for several reasons but the most significan't one for me is that it lasts long enough to be of some value.   And at the right dose its more of a pill to make the anxiety stuff go away and you feel "normal" not doped up.  Xanax is a drug that has a wham to the face effect which is why my PDoc hates it.  He said its why people abuse drugs to get that wham in the face effect.   Far fewer dope addicts want a bottle of "normal"

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On 4/19/2017 at 8:01 AM, Cetkat said:

First off, I'm glad you're feeling better. I just wanted to chime in and say that it's the anxiety that is the underlying problem. (Which I think you've figured out)  So that has to be solved to get back to normal sleep.  However, not getting enough sleep can make the anxiety worse and harder to combat, so I think it is appropriate to treat the insomnia too.

So this all happened while you were traveling, and it's better now that you're not?  It sounds like something about the traveling is triggering your anxiety.  I would mentally try to figure out what that is and how to combat it on your next trip.

As for your nausea, look at if it's happening on an empty or full stomach; and if it's a full stomach, what kind of food did you eat?  Drinking a small amount of milk when you take it can help.  I have a friend who could only take one of her meds on an empty stomach with milk.

Another thing you can do is to boil some peeled and chopped ginger root & a cinnamon stick in water for 20mins, strain, cool, and then either drink it straight or mixed with something. (I like sweet tea with lemon)  You only need to drink about 1/4 cup.  So you just make a batch and store it in the fridge.  The anti-nausea effect is actually pretty on par with Zofran.

Doxepin is also a good idea.  You can actually get it in liquid form, so you can control the dose.  The doctor that did my sleep study tried it with me.  I'm thinking you could get it, try it out to see how you respond, and then have it on hand when you travel just in case.  It is something you can just take as needed.  I've found that just having the ability to stop/treat something helps with my anxiety (or whatever else).  It gives me a sense of control and lets me have a better mental mindset.

If you don't want Doxepin, that's fine; but, I would recommend having some medication plan in place for if it comes back when you travel.

Thanks for all that info, @Cetkat.  Yes, it is no doubt the anxiety which messes with my sleep.  But I may not have been very clear.  I DO still get bouts of this anxiety even when I'm not traveling.  Sometimes I can pinpoint a trigger but often I can't.  It's really sort of conditioning.  It started years ago after my oldest child was born.  I was lying in bed in the middle of the night after a feeding, and told myself, "I must fall asleep NOW.  I'll have to get up in 2 hours again to do this!"  Rather than the annoyance/severe irritation that most people would get when they didn't fall right to sleep, I went into a state of panic with all the varying symptoms (shaking, diarrhea, etc.).  It wasn't an "attack" per se because it didn't go away.  Then all my fears turned to, oh my gosh, what if this doesn't go away?  I'll NEVER be able to sleep!  I can't take care of my child!  It is definitely a "fear of the fear" and is absolutely, positively ridiculous, but I can't help it.  Nowadays, without meds, every once in a while I'll be perfectly happy lying in bed and the "what if it happens again" will pop into my mind.  Usually I can distract myself but sometimes I can't and when I can't the anxiety takes over.  I think the reason it happens MORE when I travel is because I feel stuck which gives me even more reason to fear this fear.  Completely ridiculous, I know.  But your point about having a plan in place is KEY because if I have a plan the panic usually does not escalate.

Don't get me wrong.  I am a generally anxious person and have been a "what iffer" my entire life.  I think I'm probably better off staying on an SSRI or similar permanently (or doing serious CBT). 

Thanks for the advice about the milk and ginger.  Roughly how much chopped ginger root would you use?  I initially used some ginger capsules.  They only worked sporadically.  It's hard to figure out.

Thx again!

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1 hour ago, HAL9000 said:

I would give a thumbs up to Valium for several reasons but the most significan't one for me is that it lasts long enough to be of some value.   And at the right dose its more of a pill to make the anxiety stuff go away and you feel "normal" not doped up.  Xanax is a drug that has a wham to the face effect which is why my PDoc hates it.  He said its why people abuse drugs to get that wham in the face effect.   Far fewer dope addicts want a bottle of "normal"

Thanks, @HAL9000.  Do you prefer Valium over Klonopin?  And I've tried .25 to .5mg Xanax.  It doesn't seem to help when I'm in panic mode (which really worries me and makes me want to get off of benzos).  I just really want to make sure I'm not becoming extremely tolerant.  I'm sure I've developed somewhat of a tolerance to the .5mg Klon that I've been on for about 13 years (it's only been the past few months and sporadically throughout the years that I've been on more than that).  I just want to go down/off benzos so I know they're there in the future to help me if I need them.  I know that sounds strange, but not having something that can quell the panic FAST is a scary thought.

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