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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by Prefect on September 1, 2012, at 11:47:53
Hi, I'm new here and would appreciate some input on my situation.
15 years ago - Doctor put me on 25mg Luvox for somatic symptoms, dizziness, etc.
7 years ago - Developed severe agoraphobia & anxiety, basically homebound for a few months, only went to work. I toughed it out, forced myself to get out and develope coping skills, BUT ALSO dosed up my Luvox to 50mg (no doctor input), and it worked. Last 7 years I was very high functioning, very successful in my career, got married, bought a house, travelled to other countries, etc. Only anxious during air travel and in tall buildings.
6 Months ago - Started wondering if my amazing success has been because of me, my coping skills, and my handle on this disease, or the Luvox. I began thinking 50 mg of Luvox after so many years couldn't possibly be why I'd been doing so well, especially at such a small dosage...My body must have surely developed tolerance to it and I waas just taking a useless pill that would trigger discontinuation syndrome if I was stuck in an island somewhere and suddenly didn't have access to it. I also began wondering what taking Luvox indefinitely would do...
So I began tapering. VERY CAREFULLY...I took 6 months to go from 50 mg to 37.5 mg, by taking full pill somedays of the week and 3/4 other days, untill 3 weeks ago I hit 37.5 mg for everyday of the week.
2 weeks ago it came back...Now I have agoraphobia and anxiety. REALLY?!! I have relapsed from going from 50 to 37.5?!! Is it possible my entire success & high functioning persona was just a byproduct of this 12.5 mg of Luvox I dropped down?! All those coping skills I thought I had developed were just this 12.5 mg of Luvox?! It can't be...I didn't even think 50mg of Luvox was a high enough dose to treat this.
My question: Is this a relapse or discontinuation syndrome? I have no bizzare symptoms (brain zap, etc) indicative of discontinuation. I'm just back to where I was 7 years ago. And if it is a relapse, does this mean I'll have to be on Luvox for life?! Is it usual and safe to be on an SSRI for life for a condition like this?
I'm sorry for the lenght of this post, but I find this outcome very baffling.
Thank you all psycho-babblers for any help you can give me.
Posted by schleprock on September 1, 2012, at 12:55:32
In reply to THE MONSTER HAS AWAKENED..., posted by Prefect on September 1, 2012, at 11:47:53
You wrote: "Is it usual and safe to be on an SSRI for life for a condition like this?"
Lou should have an answer for this.
Posted by schleprock on September 1, 2012, at 13:44:23
In reply to THE MONSTER HAS AWAKENED..., posted by Prefect on September 1, 2012, at 11:47:53
Anyway, there is a small chance that your SSRI hs stopped working and you may have to either augment it with another med (probably a benzo) or switch the med with something else.
There is however a chance that the dosage decreaese is to blame because you may have a sensitive metabolism. A long time ago I lowered my dosage of a med from an alternating 100/150 mg per night dosage to just 100mg. I was fine for about a year until I suffered my first real panic attack. Six months after that I suffered from some other bizarre symptoms. In all, it took me about a year and a half before I made the connection to a decrease in dosage. I felt normal again as soon as I went back up. Roughly a small 25mg made a gigantic difference.
You'll be incredibly lucky if that's the case. I don't think there's a single member of this community benifitting from only one medication (except one who apparently doesn't take anything, at least not pharmaceutical). Please don't take that for granted!
Posted by Phillipa on September 1, 2012, at 19:14:49
In reply to THE MONSTER HAS AWAKENED..., posted by Prefect on September 1, 2012, at 11:47:53
First welcome to babble. I relate so fully to you. In a way same here. But I'd been on benzos low doses for over 40 years now. I also have been on first 25mg of luvox. About 6 years ago raised to 50mg. Along with benzos fine. I saw a pdoc here about 5 years ago who wanted a baseline on me as I said not depressed. He discontinued the 50mg of luvox immediately. Gave me 6mg of xanax took for a week no sleep at all. So he switched me to can you believe 8mg of ativan. Still no sleep. Ended up in ER. No psych in this branch of the hospital so they called the other hospital with pdocs and psych. Well this doc I had here in ER came back scratching his head and said he didn't understand but apparantly I needed the luvox and then l0mg of valium. I resumed the 50mg of luvox that night and took regular dose of valium and slept like a baby. I never thought anyone else could possibly have the same thing as me. Now six years later must be out of the house a lot and can't be alone. Fear. I have since added .5mg of xanax and take 7.5mg of valium & 2.5mg of lexapro. The lexapro I can get off but the luvox not!!! The first time given luvox I took 250mg of it with ativan and felt great. Unfortunately this doc took me off it for a trial and never have taken same dose. There is definitely something about luvox what I have no idea? Phillipa
Posted by Chris O on September 3, 2012, at 2:51:47
In reply to THE MONSTER HAS AWAKENED..., posted by Prefect on September 1, 2012, at 11:47:53
Prefect:
Could it be a combination of placebo effect (thinking the anxiety was gone as long as you took your 50mg of Lexapro) and some mild accompanying withdrawals? I too struggle greatly with agoraphobic-type anxiety. I have tried all of the SSRIs and completely baffled by the way I sometimes seem to get withdrawals when coming off of them, sometimes nothing at all. For me, it seems like my anxiety can "hide" in my body. In others, I can put it someplace mentally, think it's not there (but it really is; never goes away), and then it seems to come raging back when I least expect it. Not saying this is the same thing you are experiencing, but it's very common for me.
Chris
Posted by Prefect on September 3, 2012, at 20:32:37
In reply to THE MONSTER HAS AWAKENED..., posted by Prefect on September 1, 2012, at 11:47:53
Thank you folks for responding to my post.
Schleprock, I guess I'll be looking forward to what Lou has to say about life time SSRI usage. I have a feeling this is a relapse rather than discontinuation symptoms, because it is mimicking the original condition exactly, and I have no odd symptoms characteristic of withdrawal.
This means even if I go back to my original dosage (which I decided to do 3 nights ago) I'll still have a few months of hard work ahead before I get back to where I was just 3 weeks ago, WHICH SUCKS! Chris may know what I'm talking about, but it would involve trying to leave the house and going to all those places I was just fine going to only a month ago, and battle severe anxity until it subsides and I feel normal being there again (I call this process reclaming territory). This battle, from what I remember 7 years ago, is agnonizing...
This also means I have serious organic disease and can never be off meds, or I'll have a relapse.
I'd have no problem staying on Luvox for good as it seems to agree with me, and I've never had side effects. I like how I feel on it (calm yet not numb), and I guess, schleprock, I am lucky all I seem to have needed the past 7 years is 50mg of Luvox. And, Chris, I'm not sure a placebo would last 7 years, I think this med works for me.
BUT! I just don't know what the consequence of life time SSRI usage would be! I wonder if anyones been taking this stuff long enough to actually take it to the grave with them...It's an odd idea.
Posted by Phillipa on September 3, 2012, at 20:48:45
In reply to Re: THE MONSTER HAS AWAKENED..., posted by Prefect on September 3, 2012, at 20:32:37
I probably will as age 66 now. Benzos since age 24 and luvox probably 11 years now. Take the 50mg but I'm still a mess. Phillipa
Posted by Prefect on September 3, 2012, at 21:19:07
In reply to THE MONSTER HAS AWAKENED..., posted by Prefect on September 1, 2012, at 11:47:53
A mess, Phillipa, as in interfering with your daily function? If that's true, that must be tough, cos it sounds like you've tried different meds and still haven't found a "compromise"?
What I mean by "compromise" is what I had before this relapse. I haven't been healthy in the head since 27 (this crap runs in my mother's side of the family...Thanks Ma...), but people can't tell. I'm successful in most avenues in life but sometimes feel like a phony, because, I think if only people knew how really insane I am, and what sort of odd thoughts I have when I'm placed in an anxiety provoking situation...Real anxiety feels like insanity to me; it's not just fear...it's odd thoughts, make you want to run for shelter, dig up dirt and bury yourself...But I love life, and the level I've been functioning past few years. I don't want to lose that. That's the compromise. I'll be out there reclaiming territory and telling the bastard to go to hell...This place is mine.
Posted by phidippus on September 3, 2012, at 22:37:52
In reply to THE MONSTER HAS AWAKENED..., posted by Prefect on September 1, 2012, at 11:47:53
>Is this a relapse or discontinuation syndrome?
This does not sound like a discontinuation syndrome. This seems like a return of symptoms.
You are right about the dose. You should be taking at least 200 mg to treat your anxiety, however, even at 50 mg, Luvox can be a powerful antidepressant. One of its mechanisms of action is sigma-1 receptor agonism. It also has very high affinity for the seratonin transporter.
>Is it usual and safe to be on an SSRI for life >for a condition like this?
If you have a generalized anxiety disorder, it is to your benefit to take antidepressants for life, unless they come up with a cure for GAD.
Antiddepressants are generally neuroprotective and ward off the real damage caused by anxiety-long term anxiety can shrink the Hippocampus, an important brain structure. Don't be afraid of taking the Luvox long term.
You are doing the right thing with regards to the Agoraphobia-developing coping mechanisms to deal with it. Agoraphobia responds strongest to therapy and not so much drugs.
Have you had an increase in stress in your life?
Eric
Posted by Phillipa on September 4, 2012, at 19:03:01
In reply to Re: THE MONSTER HAS AWAKENED... » Prefect, posted by phidippus on September 3, 2012, at 22:37:52
Eric I have. That's when things get worse. Sometimes things are so much better. Shall we say a luvox lifer? Phillipa
Posted by Prefect on September 4, 2012, at 19:36:22
In reply to Re: THE MONSTER HAS AWAKENED... » Prefect, posted by phidippus on September 3, 2012, at 22:37:52
Eric,
I appreciate the advice very much.
Actually my life had been great until this happened, no stresses at all. This is the only source of my stress. And it wouldn't have happened if I hadn't been arrogant enough to think 50mg of Luvox I've taken for 7 years got nothing on my hard-earned-coping-skills! But boy was I wrong. I've been back on 50mg for 4 days and I can already tell the difference. All I have now is managable fear when I'm out reclaiming all the territory I took 7 years to gain and 3 weeks to lose...Last 3 weeks what I felt was close to madness, odd thoughts, severe loneliness, thinking I'm about to lose control...And be launched out of this earth into space and nobody would be able to grab me. Try explaining that to someone who's not in your head...
The craziest thing is normal life stresses don't phase me much, let alone cause me to have a relapse. I deal with them in a pretty calm and collected fashion and must say I'm pretty successful in most of what I do. This is the first relapse I've had since I've had the condition, and it's the first time I dropped below 50mg.
Which is why I wonder if I may have a chemical problem. I've developed newfound respect for Luvox when only last month I suspected it might be freeloading off my hard earned success and just giving me GIRD. I looked up the technical material you wrote on Luvox and it was still over my head. Perhaps my behavioral approach is the reason I can manage on only 50mg, and I hope this dose will do for a long long time.
Posted by phidippus on September 5, 2012, at 14:50:10
In reply to Re: THE MONSTER HAS AWAKENED..., posted by Prefect on September 4, 2012, at 19:36:22
I'm glad you went up to fifty. Maybe someday you'll have the wherewithal to try a higher dose. You might enjoy the benefits.
Eric
Posted by Prefect on September 7, 2012, at 19:00:27
In reply to Re: THE MONSTER HAS AWAKENED... » Prefect, posted by phidippus on September 5, 2012, at 14:50:10
I've been taking a couple of days to digest that last post! LOL...Eric, you're saying you're not a proponent of finding the lowest dosage of an SSRI that would keep you functioning well? I thought that was the standard approach.
What would be the reason for going over my 50 mg? Wouldn't that make a person more prone to numbness, hasten SSRI poop out, and prevent real gains from taking place during behavioural and desensitization approaches for agoraphobia and anxiety? I thought the presence of a certain level of anxiety during desensitization was necessary for success. Worked for me 7 years ago...So I'm a little intrigued by your statement.
Posted by phidippus on September 7, 2012, at 23:29:21
In reply to Re: THE MONSTER HAS AWAKENED..., posted by Prefect on September 7, 2012, at 19:00:27
I recommended a minimum of 100 mg of Luvox based on personal experience. I just seemed to reap more benefits at that dose. The reasoning for going overr your 50 mg dose is really just a matter of maximizing benefits.
Numbness, or flattening of affect is a problem with Luvox at higher doses-200 to 300 mg. You don't have to worry about it at your low dose, even if you were at 100 mg.
I have friends who have been on Luvox for years at high doses and have never experienced poop out.
Tachyphylaxis is a phenomenonn that is not dose dependent-it can occur at any dose.
Studies tend to show controlling anxiety during exposure therapy does not affect the success of the therapy. In fact, too much anxiety can impede learning during exposure therapy. I have OCD and have done a lot of ERP and on occasion took Ativan to help control my anxiety during sessions.
Eric
Posted by schleprock on September 8, 2012, at 1:17:32
In reply to Re: THE MONSTER HAS AWAKENED... » Prefect, posted by phidippus on September 7, 2012, at 23:29:21
> I recommended a minimum of 100 mg of Luvox based on personal experience. I just seemed to reap more benefits at that dose. The reasoning for going overr your 50 mg dose is really just a matter of maximizing benefits.
>
> Numbness, or flattening of affect is a problem with Luvox at higher doses-200 to 300 mg. You don't have to worry about it at your low dose, even if you were at 100 mg.
>
> I have friends who have been on Luvox for years at high doses and have never experienced poop out.
> Tachyphylaxis is a phenomenonn that is not dose dependent-it can occur at any dose.
>
> Studies tend to show controlling anxiety during exposure therapy does not affect the success of the therapy. In fact, too much anxiety can impede learning during exposure therapy. I have OCD and have done a lot of ERP and on occasion took Ativan to help control my anxiety during sessions.
>
> EricI think you should be an the minimum effective dose of any med. If you were fine for seven years on that dose, there's really no reason to raise the threshold. (Of course, I've spent a long time on a med where a raise in plasma levels would supposedly impact it's efficacy; though before a certain "interference", I couldn't really imagine feeling any better than i did). And as you said, your only reason for lowering the dosage was a conscientousness of being "dependant" on the med. (I actually went through the same thing with my med, with semi-disasterous results. But everything returned to normal once I got back on the minimum effective dosage.)
But arguably the most important reason not to unnecessarily increase your dosage is because you DON'T want to be caught in an unbearable hardship should your current cirumstances change. There's always a strong possibility that you might have to pay out-of-pocket for this stuff, and doubling your dose would be doubling the price. You'll certainly be in dire straits if you get dependant on a higher dose and have to make due with less.
Posted by Prefect on September 8, 2012, at 21:01:31
In reply to Re: THE MONSTER HAS AWAKENED..., posted by schleprock on September 8, 2012, at 1:17:32
My company benefits cover most of the cost, so that wouldn't stop me from raising my dosage. The only reason I would ever not have access to this med is if Luvox ever stops being available (I hope that never happens).
I see both point of views, although I did so well for 7 years on 50 mg. I've been back to 50 mg for a week now and I was already out and about in the city today with only minor discomfort in the begining which is likely anticipatory anxiety. The panic doesn't stalk me the way it did a couple of weeks ago. I have a feeling this time around things should be easier than 7 years ago when it hit me, because this time I have experience.
I do wonder if SSRI required dosage is affected by body weight, like alcohol? I'm not a big guy and maybe that's why 50 mg does it for me? Interesting question.
This is the end of the thread.
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