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Extreme difficulty when in final stretch? Stay on low dose forever?

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marie123   
marie123

Hi camel. I know what you're saying, you're sick of tapering just like me. I recently reinstated. I want to be med free but it sure is a lot of work and at times traumatizing.

 

I thought I was done with Trazodone and then I could now tackle Remeron. But not so fast, I crashed and burned. Hopefully getting stable and then I will hold for a long, long time. I thought about just staying on these low dose meds, thinking it's just not worth it. For instance, my sister tapered fast Lexapro and got hit with late withdrawal just like me. She took the same amount of Lexapro as a reinstatement and felt better right away. She says she will never go off it, it was too awful when she quit.

 

I worry that they will change the manufacturer on me. I had that happen before and it was not good. I'm very sensitive med wise. Also, I know me, and given enough time I will resume my taper. I am just stubborn that way. It will be a lot of time later and will be at a very, very slow turtle's pace.

 

Maybe take a long break might help. Good Luck!

 

Marie

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Altostrata   
Altostrata

 

If you wish to remain on any dosage, that decision is up to you. If your symptoms are currently minimal, why not take a vacation from worrying about them?

 

A withdrawal vacation is tempting, but since i'm on such a low dosage, i really wanted to finish it. But this seems much more difficult then i thought it would be...

 

Maybe it's time to see things in perspective. What would be more harmfull. Smoking or a low dose of SSRI? What do you think?

 

 

Hard to say. Smoking is definitely bad for you. My brother just lost a lung. The dangers of SSRIs are largely unknown.

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stan   
stan

hi,

 

can we stay on a low dose forever?

 

my original was bearable anxiety, so not a hard problem

 

my experience

paxil classic dose has to be 20 mg, i took 2 years 20 mg , then 10 mg (half pill) 10 years

 

i notice first 6 years were "ok", then next years i had side effects more and more, a kind of slow increasing tolerance pop-out

 

so i think we cannot stay for life on a low dose, after a few years, side effects are here

 

so i had to take more paxil, or add several drugs, switch etc, i choose to taper

 

and today i am in discontinuation syndrome or protracted withdrawal after more than 7 years off any med

 

i know other people who took 10 years a half dose and had also problems

 

so i think we cannot stay on a low dose forever, problems will come slowly

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scallywag   
scallywag
I worry that they will change the manufacturer on me. I had that happen before and it was not good. I'm very sensitive med wise. Also, I know me, and given enough time I will resume my taper. I am just stubborn that way. It will be a lot of time later and will be at a very, very slow turtle's pace.

Marie, you can ask your pharmacy to give you the same generic manufacturer. Another member on the board posted that s/he had the pharmacy put a note on her file about the manufacturer, that s/he renews prescriptions a week before they're needed and reminds the pharmacy again at that time about needing a specific manufacturer.

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marie123   
marie123

Yes, I did that once for Trazodone and once for Mirtazapine. What I mean to say was I am afraid that the manufacturer will no longer make the med. I'll have to use another manufacturer and I'll get sick for a while until I get used to the new pill. Not fun at all!

 

Marie

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AmyK   
AmyK

Thx for the responses AmyK and Peggy

 

Hi Camel.

I am so sorry you had to updose. When did you do that?

Have you tried smaller drops, like 2-5 %?

That could be easier.

 

(I am tapering zoloft too.)

 

I just recently updosed a few days ago. I was doing OK, but have trouble sleeping again the last month (average of 5hours a night) and feel anxious about it, like i will never been able to sleep again, never function normally again, fail my life etc... So i updosed a bit... I'm looking for a job right now and these interviews and the prospect of having a job with responsibility again make me  nervous and hinder my sleep. Sometimes I think I subconsious sabotage myself by not sleeping, that i'm not worthy of having a normal life...a sort of self harm. At this moment i feel like i'm lacking the self confidence of coping with a new job etc. I just miss the selfconfidence and maybe bad sleeping is my way to express this...And there is the vicious circle, cause not enough sleep makes me depressed and anxious... It's really bizarre, cause when i feel good, i'm a really confident, capable and happy person...

 

I tried the smallest drops i could: 1mg less of the pill than the previous dosage (i'm now on 16mg of the pill, so there are 16 drops ahead), so it was like 7%. I don't want to mess with liquids, tried it in the begin of my taper but couldn't measure exact dosages. I don't understand how you can define such small dosages exactly...

 

Any other ideas about long term (negative) side effects of a small dosage? 

 

Camel, you do know about digital scale, do you?

 

Many of us use the  "GEMINI-20 Portable MilliGram Scale" that weighs down to 0.001 g. Its available in many web shops. (And as a I wrote in a PM I also use a dilution to make the tiny, tiny cuts. But thats because I am super sensitive. Hopefully you don't have to do that.)

 

More info here on tapering with a digital scale: http://survivingantidepressants.org/index.php?/topic/1596-using-a-digital-scale-to-measure-doses/?p=6765

 

Best of luck!

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scallywag   
scallywag

 i recently updosed to 5,2mg of zoloft. 3.9mg was the lowest i've ever been. During those 2 years i've really taken it slowly with drops <10% for severel months. This is the second time i have to updose and waste my tapering...

 

I'm really considering to end my taper and stay on this 5,2mg.

 

I always hit a hump around about 18mg effexor - at the moment i have decided to stop tapering again, have updosed and will sit for a while - i may have to pay the piper one day, but no one knows what the future holds. I am really sad about it, but have to do what i have to do to keep me functioning.

 

It could be that, after a long time at 5.2mg, you could resume tapering.

 

peggy & camel:

I really hope that you'll consider what Alto said as a potential outcome of holding at current levels for a while.  The fact that it's too difficult to go below a specific drug amount may simply be  that your central nervous system needs time to fully integrate the dosage changes you've already made. 

 

We all want our minimum effective dose to be 0.000. For me -- if it's 5 mg or 10 mg or 2.3, I'll make my peace with that. And after a looonng hold, I'll try a tiny cut.  It's much better than 30 mg or 60 mg per day.

 

Let's have a look at the current scores:

  • camel-44.8, zoloft-5.2 >>> camel stomps sertraline!
  • peggy-132,  effexor-18 >>> peggy trounces effexor!

Each of you is a champ for making it this far with your taper and finding your **CURRENT** minimum effective dose (MED)!

 

Yes, I did that once for Trazodone and once for Mirtazapine. What I mean to say was I am afraid that the manufacturer will no longer make the med. I'll have to use another manufacturer and I'll get sick for a while until I get used to the new pill. Not fun at all!

 

Marie, Unless there's a series of catastrophic events within a short period of time involving people taking that drug and those events get national and international media coverage forcing governments to withdraw approvals, rest assured that your drug will be available. Its "popularity" with pDocs may decrease because of some new "latest and greatest" innovation but someone will make it as long as it's still approved by federal health authorities.

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vilus   
vilus

I can't taper all the way off either. I can stabilize on a low dose. Remember to stabilize at least 14 days before a decrease. Decreases are aweful

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vilus   
vilus

Maybe I should just chill out on a low dose a little longer. Is it a placebo effect?

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LoveandLight   
LoveandLight

Staying on low dose..I.e. Sertraline the lowest possible dose provided is 25mg and the pill could be split..but 3.9 mg are you gonna weigh or dilute the dose and all that performance the rest of life? I'm just wondering cos I'm wondering the same..I can not imagine having to accurate weigh or dose out each tiny dose..the. Rest. Of. Life!

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scallywag   
scallywag
Loveandlight - If it turns out that the best dose for me is some amount that isn't commercially available, I'll dig into my wallet/bank-account and pay for custom doses from a compounding pharmacy.

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Brandy   
Brandy
 

.....

 

I tried the smallest drops i could: 1mg less of the pill than the previous dosage (i'm now on 16mg of the pill, so there are 16 drops ahead), so it was like 7%. I don't want to mess with liquids, tried it in the begin of my taper but couldn't measure exact dosages. I don't understand how you can define such small dosages exactly...

.....

 

camel, when looking for something else I happened to read this thread. I'm confused about how you've been tapering on the last part of your slow taper.

 

First of all, are you tapering by 1 mg. of medication? If so, how are you measuring it?

 

Or are you tapering by 1% of the weight of the pill? (I assume it's a tablet since you said you don't want to mess with liquids.) I'm confused because you wrote:

 

 

I tried the smallest drops i could: 1mg less of the pill than the previous dosage (i'm now on 16mg of the pill, so there are 16 drops ahead)

 

I don't understand how 1 mg. 10% or less of your previous (most recent) dose at the low doses you've been at for a while, unless I'm misunderstanding something about how you're tapering.

 

Also, it is very common for people to need to do smaller drops than previously at the very end of their tapers. I believe there is an excellent thread about this on SA, but I'd have to find it.

 

If insomnia is your only significant symptom, it sounds like you've done an excellent slow taper. But depending on how you're measuring your dose, it may be that as you've gotten to the lower doses your taper has no longer been slow. Possibly now much too large drops in dose. That would particularly be a problem at the lower doses of the end of a taper, and possibly might be why you're apparently having more problems now.

 

Apologies if I'm misunderstanding your taper method and schedule. It might help us if you could explain them in more detail. (Or if I were better at math lol.) And please know that measuring very tiny and precise small doses is very easy with liquid if you use the right kind of oral syringe, if that might help your tapering.

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btdt   
btdt

There are some interesting comments on your question of long term effects.. and comments like Stans can it keep working long term?  both interesting... 

 

There may be something to what Stan says in long term tolerance  as I was drugged a long time 18 years and hit a wall too where my body started showing signs that caused a neurologist to take me off effexor cold turkey... from then on i have had reactions to drugs and have never been able to tolerate another psych drug.. my body quickly rejects in the form of spitting them out immediately or in the case of benzos I get the opposite effect from a them as what is expected called paradoxical.  

 

It is possible that after long term use some bodies just say no... and start acting up. We don't know the effects and if anybody does... for example pharma they are not telling us.  So it is a crap shoot really.  We take our chances in life and like anything else this is a chance I think your odds are better at low dose being more safe than a high dose but I could be wrong much of it may depend on your personal make up as some people don't have problems with these drugs or so I hear. 

 

In my mind when I take stock of the situation you have made a serious effort to get off and your body has repeatedly told you no... so now it is time to let go of the expectation and the imagined reward of being drug free and listen to your body. The real question here is how is your life going can you sleep eat work love people are physically and mentaly well enough to have a life while on a low dose if the answer is yes... this is a no brainer Stick with low dose and live your life. 

 

There may come a time where this low dose bites you but so what you will have had all this time to live a good life.. and deal with that when it comes if it comes.  After you have been on the low dose for an extended amount of time it may well be that it can be tapered smoothly once you reach the new normal.  

 

By showing you effects of reduction now your body is saying it has done all the adjusting it can do right this moment... our bodies adjust very slowly and it may not be saying no you can't ever quit this drug.. it may well be saying you can't quit this drug right now... so live enjoy your life try not to worry about it.  

 

It is an easy decision if you believe what other people on here have been thru by trying to force their bodies off drugs... there are many good examples here... the fallout is misery .. and just now you sound ok better than ok you sound good... so if you are stick there and revisit it in a year... enjoy your life and be grateful to those who came before you to us learn all this... if not for them and their pain we would not know this much... 

 

enjoy yourself NOW nobody knows if there is a bad day coming a car accident or any of life's bad turns your here now your ok now... enjoy your life that is my suggestion. 

 

It may be a matter of adjusting your perspective more than anything... think of it this way taking a small dose allows you to win.. now and maybe win later when your body says it is time to taper.. the idea of being off the drug is not gone it is delayed the real win is enjoying your life being well with or without a drug.. it is the bigger prize in this war.. to win by getting off and being disabled long term is not a win... it is a mistake and I am living it .. so go win win. 

 

I wish you peace

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btdt   
btdt

bit of history ... I had several drug changes in my history and I did not go off of effexor willingly I was taken off by a neurologist after developing head drops and foot dragging ... he did not know about cross taper I guess and tried to switch me to cymbalta it was a disaster many other drugs were tried none worked since then.  If taking a low dose of anything would have made my life ok I would be taking it.  Taking it forever would not rattle me as I had expected to take effexor forever as I was told I would be... sometimes looking back I was weighing taking E forever against the craziness of previous cold turkey drug changes and sar... I thought without a drug that would be my normal state.. I was wrong.  We know more now "we" those of us here do better the more we know.  You too will make different choices and change your mind on things the more you know.  That is how this all works with any luck the right people will chime in at the right time to help you along. 

I wish you peace

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Alexander   
Alexander

Wise words indeed and how I wish I had read them over 2 years ago.  I fast tapered after 12 yrs seroxat, I was clueless what I was doing and thought I would be ok in a few weeks.   After 3 months without meds I discovered Paxil progress and then this site and realised that recovery might be a long way off.   By that time, I had thrown my seroxat away and did not want to return to the doctor for more.  I always wonder if I had tapered really slowly, if things might not have been so bad as they have been the last 2 years.

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Meowmeoww   
Meowmeoww

I'm also on a very low dose (6 and a half)...dealing with similar dilemmas you have. Its quite frustrating

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btdt   
btdt

Your not alone Alexander I did it too and so did many other when we know better we do better it is all about quality of life .. isn't it... if not what is it about?  People that have not done a ct or too fast taper need to read about it and believe every word.. cause the words can only go so far in describing how bad it is..I would not wish ct on pharma .. well unless I was in a wave then I do it hourly. 

peace

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Susanne   
Susanne

Hi Camel, I've been on Lexapro for 6 years and sometimes wondered if it was healthy for my body. I searched with Google and most sources said that there's not much we know about the long term effects.
I myself didn't experience much side effects and my OCD wasn't coming back when I was on the lowest dosage of Lexapro (which is 5 mg available here in The Netherlands). So I was prepared to take 5 mg every day and didn't think about the long term effects all too much. I mean, every day in life can by your last day. I'm not advising a hedonistic life style but not worry too much and just wait and see what the future may bring. Well that worked for me for a few years.

Now I just want to quit with the drug because it's not improving my OCD. I'm depressed, but that's more because the Lexapro isn't doing the tric anymore. I wish it would help me, but I rather do it on my own than risking another poop-out or health problems on the long term.

I wish you all the best and maybe we can talk in Dutch some time ;-)

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marie123   
marie123

 

I worry that they will change the manufacturer on me. I had that happen before and it was not good. I'm very sensitive med wise. Also, I know me, and given enough time I will resume my taper. I am just stubborn that way. It will be a lot of time later and will be at a very, very slow turtle's pace.

Marie, you can ask your pharmacy to give you the same generic manufacturer. Another member on the board posted that s/he had the pharmacy put a note on her file about the manufacturer, that s/he renews prescriptions a week before they're needed and reminds the pharmacy again at that time about needing a specific manufacturer.

 

Yes, I only get Qualitest Trazodone and specify that at the pharmacy. I am just concerned that Qualitest one day will decide they will no longer manufacture this med. I can't stay on this low dose of Trazodone anyways. it's giving me shoulder pain. I know it's the Traz because in the 3 months I was off it, the shoulder pain diminished almost completely. Now it aches a lot more.

 

Marie

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savinggrace   
savinggrace

Yes, btdt...I have often said that all psychiatrists, pharmacists, or anyone who prescribes these things, should be required to spend a couple of hours to read SA before they write a script...or your suggestion would probably be more powerful....live in " a wave" for hmmm day, two days,...how many?   Maybe then they would believe us and stop the madness!

 

The thing is, I don't even think pharmacists realize what they are doing.  IF they did, they would not dispense some of these drugs, especially in a poly-drugging situation, as they would realize how dangerous these drug interactions are.  I have tried to have a conversation about CYP450 drug interactions with pharmacists who are CLUELESS!  I only hope they learn something from me and counsel their customers (in my dreams, right?)  Get 'em in, and get 'em out...

 

Grace

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savinggrace   
savinggrace

Hi Marie,

 

I am so sensitive that I take name brands of all my drugs.  They cost $600/month and we have a huge co-pay.  In not too long, we will be on Medicare who doesn't cover Valium at all, and name brands are very expensive.  I understand your fear about changing manufacturers.  The reason I switched to name brand (fortunately our insurance continues to cover it) is that, though it took me years to realize it, I was feeling very unstable at the beginning of all my refills. I worry about the future as we won't be able to afford to pay out-of-pocket for the full price of name brand.  My plan is to find a smaller pharmacy that will make a commitment to me to get the drugs from the same manufacturer every month, even if it costs me more.  When I switched from generic to name brand klonopin years ago, I was able to reduce my dose by 30%....a huge variation....I guess to many it doesn't make a difference, but changing anything, fillers or inactive ingredients or method of dosing, puts me into very acute w/d very quickly.  i now feel no difference from one refill to the next, unless I change my dose, of course.

 

Best to think not too far ahead of ourselves...

 

Grace

 

Take care.

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indigo   
indigo

I was tapering for two years from 20mg of Prozac down to 3.8mg. Each 1% micro drop = two months of misery. 

so I took a seven month vacation from drops and began to feel really stable and happy.

Last week did another 1% drop and I'm already a sobbing, hyper sensitive wreck again.

I also would stay at this tiny dose forever if I could find an absolutely totally reliable compounding pharmacy

to make up tablets of exactly dose. Has anyone had satifying experience with online pharmacy

doing this? 

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marie123   
marie123

Hi Marie,

 

I am so sensitive that I take name brands of all my drugs.  They cost $600/month and we have a huge co-pay.  In not too long, we will be on Medicare who doesn't cover Valium at all, and name brands are very expensive.  I understand your fear about changing manufacturers.  The reason I switched to name brand (fortunately our insurance continues to cover it) is that, though it took me years to realize it, I was feeling very unstable at the beginning of all my refills. I worry about the future as we won't be able to afford to pay out-of-pocket for the full price of name brand.  My plan is to find a smaller pharmacy that will make a commitment to me to get the drugs from the same manufacturer every month, even if it costs me more.  When I switched from generic to name brand klonopin years ago, I was able to reduce my dose by 30%....a huge variation....I guess to many it doesn't make a difference, but changing anything, fillers or inactive ingredients or method of dosing, puts me into very acute w/d very quickly.  i now feel no difference from one refill to the next, unless I change my dose, of course.

 

Best to think not too far ahead of ourselves...

 

Grace

 

Take care.

Hi Grace. Just like you I can't change a thing with my meds. I'm so sensitive too. I am still using the 100 mg pill to get my 2 mg. I won't ask the doc for the 50 mg because I'm afraid of the same issues, fillers, potency, etc.

 

I'll try not to worry about it and just keep going on with my taper plan. Traz has been a bear to come off of. Just trying to get nice and stable now. How are you doing?

 

Marie

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scallywag   
scallywag

I was tapering for two years from 20mg of Prozac down to 3.8mg. Each 1% micro drop = two months of misery. 

so I took a seven month vacation from drops and began to feel really stable and happy.

Last week did another 1% drop and I'm already a sobbing, hyper sensitive wreck again.

I also would stay at this tiny dose forever if I could find an absolutely totally reliable compounding pharmacy

to make up tablets of exactly dose. Has anyone had satifying experience with online pharmacy

doing this? 

indigo, you may want to read and post in the compounding pharmacy thread. There may be someone who's identified an online CP, or a local CP not that far from you.

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savinggrace   
savinggrace

Hi Marie,

 

I am not doing well, but I am doing better than I was forcing my taper when my body was giving me very loud signals to stop, at least for a while.

 

Do not beat yourself up, or imagine yourself a hypochondriac over this sensitivity we share.

 

The last time I tried to change my valium dose from  a ten, half of a five, and half of a two (13 mg.) to a ten, a two and part of a two (very small cut and I had no 5's left) I felt like I was in acute withdrawal overnight...woke up drenched in sweat, rigid, depressed and sleepless.  This is happened repeatedly with change of administration, tablet size, manufacturers, etc.  I now aim to get the most active ingredient in the smallest pill I can cut.

 

The only conclusion I have been able to come to is that since the 2's, the 5's and the 10's weigh essentially the same (I use a scale) there is so much more filler in the lower doses that my body freaks out because it is absorbing differently.  I dug my feet in though, and we now make 12.84 mg. dose out of 10's...more active ingredient and a lot less filler!  It even took a bit to adjust to this change but I think I did.

 

Thanks for asking how I am.  I am a bit resigned to a very long hold, for now.

 

Grace

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Godiswithme   
Godiswithme

Hi camel. I know what you're saying, you're sick of tapering just like me. I recently reinstated. I want to be med free but it sure is a lot of work and at times traumatizing.

 

I thought I was done with Trazodone and then I could now tackle Remeron. But not so fast, I crashed and burned. Hopefully getting stable and then I will hold for a long, long time. I thought about just staying on these low dose meds, thinking it's just not worth it. For instance, my sister tapered fast Lexapro and got hit with late withdrawal just like me. She took the same amount of Lexapro as a reinstatement and felt better right away. She says she will never go off it, it was too awful when she quit.

 

I worry that they will change the manufacturer on me. I had that happen before and it was not good. I'm very sensitive med wise. Also, I know me, and given enough time I will resume my taper. I am just stubborn that way. It will be a lot of time later and will be at a very, very slow turtle's pace.

 

Maybe take a long break might help. Good Luck!

 

Marie

Hello, would you consider PMing me about your sister's details with going off and back on Lexapro?

How long was she on it? How long was she off before going back on? Thank you

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dreamingneonblack   
dreamingneonblack

Anyone ever decide maybe its just not worth trying to get off ssri? Its so hard and debilitating yet impossible to get support because its stigmatized and not taken seriously. I started doing the math and even now it will still be years before i can finally be clean off the stuff. Im considering whether to just admit defeat and take my current dose for good

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Junglechicken   
Junglechicken

I've estimated (using a spreadsheet) it will take 2 years (with 6 week holds between each drop), and I haven't even started my taper yet.

 

Can't decide whether to use liquid Lexapro and dilute with water (excellent titration skills required), or dissolve a some of the pill in water and also use a syringe.

 

Yup, it is both demoralizing and daunting.

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Happy2Heal   
Happy2Heal

Anyone ever decide maybe its just not worth trying to get off ssri? Its so hard and debilitating yet impossible to get support because its stigmatized and not taken seriously. I started doing the math and even now it will still be years before i can finally be clean off the stuff. Im considering whether to just admit defeat and take my current dose for good

 

 

I have had this thought so many times, it's not even funny. I keep thinking I'd be better off if I just stayed where I was in May at 2.5mgs

 

and even now, after reinstating about 4-5mos later at a tiny dose, I am thinking I may need to updose to get thru this, and then that thought pops up again: why not go back to 2.5mgs and just stay there "forever".

 

but there's no way to know if I"m going to feel better when/if I do that.

 

I feel like I'm between a rock and a hard place. I so much want some decent sleep, is that too much to ask?

:/

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mammaP   
mammaP

There is no rule that says you have to get all the way off, often the smaller doses are the hardest, and people do a very long hold while functioning well, then deciding whether to restart a taper or stay on the low dose.

 

And there is no shame in updosing slightly when a reinstatement has been given some time and isn't helping much. It is best to increase a very tiny amount in case of reaction and then a hold.  What was ok months ago could be too much now. 

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Findingmyidentity   
Findingmyidentity

Hi there bud. Im in the process of tapering Paxil. Im down to about 16mg. My goal is to get down to 10mg. I think i can be ok accepting the fact that i can take a small dosage. And yes sometimes i can go on a roller coaster of emotions just thinking about about how i should go completely off. So for now my goal is short term. Who knows what tomorrow may bring. Good luck to you my friend.

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FSL   
FSL

Hi, community!

 

I don't know if this question has been posted before, but in the lights of my recent bad wave after dropping to 1,44mg of Lexapro when I was stable and fine at 1,59mg one need to ask oneself:

 

You'd rather stay at a very low dose and be stable, which means having no limitation about (job, daily activities, hobbies, etc) or dropping to zero and having a terrible WD time but being proud of claiming that "I'm off medication".

 

In my case (I was on 1,59mg of Lexapro when the max dose is 20mg and 3mg of Bromazepan when the max dose is 36mg)

 

I ask this because the horrendous stories I read here every day, of people that have come off medication and are either: bedridden, depressed when they weren't, with horrible anxiety when they hadn't, suicidal when they never were, etc.

 

Makes me wonder so much... And in the end of the day, you have ZERO guarantees it's going to work. 

 

I'm with the general opinions of this forum (we are overmedicated, doctors are clueless, medication is poison, etc) but I cannot help but wonder...

 

I'd like to hear some opinions on this.

 

Hugs and love

 

FSL

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ChessieCat   
ChessieCat
2 hours ago, FSL said:

You'd rather stay at a very low dose and be stable, which means having no limitation about (job, daily activities, hobbies, etc) or dropping to zero and having a terrible WD time but being proud of claiming that "I'm off medication".

 

From Alto's post:

 

"If you wish to remain on any dosage, that decision is up to you. If your symptoms are currently minimal, why not take a vacation from worrying about them?"

 

Edited by ChessieCat

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