savinggrace

[savinggrace]

I know better...I know better...I know better...or do I?

 

I have been reading a book (admittedly, fiction but quotes addiction/dependence issues from AA a lot) about a woman who was abusing benzos and painkillers.  While i consider myself an addict, because I am dependent on my drugs,  I find myself differentiating myself from "addicts" because they abuse their drugs.  That said, dependence/abuse both end people up in the same place for the most part.  I have NEVER taken more than my prescribed dose, and because I didn't know better, I never even upped my dose, even if I destabiized...I have always just ridden out the waves of whatever comes my way.  Not much good comes my way though.  My life is totally centered on my excruciatingly slow descent off these drugs and as I say every time (I'm sorry) I won't live long enough to taper off them.

 

Here is the phrase from AA that is eating at me...."Half measures don't work."  Historically, my body has told me that I am hyper-hyper sensitive and this way is the only way.  It's kind of like saying I'll just cut down by one beer a day...or is it?  I really believe the tenets of SA; I really do...slow, steady, simply...but mine has to be so slow and so steady it's not at all simple and I will die dependent on these drugs.  Lord knows what will happen as I age and medical intervention takes over (or doesn't; I do have a medical directive)  Meanwhile, I googled detox centers, AGAIN, today, almost laughing at their claims of getting the benzos off the receptors in a matter of days.  And then what?  Am I fooling myself?  Do I belong at NA, AA, whatever?  Am I taking the easy route or the only route?  Please forgive me for doubting myself....sometimes I wish I had ignorantly C/T'd, and then at least the drugs would be gone and this hell I am in might have an end some day...

 

Grace

[powerback]

11 minutes ago, savinggrace said:

I know better...I know better...I know better...or do I?

 

I have been reading a book (admittedly, fiction but quotes addiction/dependence issues from AA a lot) about a woman who was abusing benzos and painkillers.  While i consider myself an addict, because I am dependent on my drugs,  I find myself differentiating myself from "addicts" because they abuse their drugs.  That said, dependence/abuse both end people up in the same place for the most part.  I have NEVER taken more than my prescribed dose, and because I didn't know better, I never even upped my dose, even if I destabiized...I have always just ridden out the waves of whatever comes my way.  Not much good comes my way though.  My life is totally centered on my excruciatingly slow descent off these drugs and as I say every time (I'm sorry) I won't live long enough to taper off them.

 

Here is the phrase from AA that is eating at me...."Half measures don't work."  Historically, my body has told me that I am hyper-hyper sensitive and this way is the only way.  It's kind of like saying I'll just cut down by one beer a day...or is it?  I really believe the tenets of SA; I really do...slow, steady, simply...but mine has to be so slow and so steady it's not at all simple and I will die dependent on these drugs.  Lord knows what will happen as I age and medical intervention takes over (or doesn't; I do have a medical directive)  Meanwhile, I googled detox centers, AGAIN, today, almost laughing at their claims of getting the benzos off the receptors in a matter of days.  And then what?  Am I fooling myself?  Do I belong at NA, AA, whatever?  Am I taking the easy route or the only route?  Please forgive me for doubting myself....sometimes I wish I had ignorantly C/T'd, and then at least the drugs would be gone and this hell I am in might have an end some day...

 

Grace

Hi SG ,I like this post ,you have written my own feelings especially lately  ,I am painfully sensitive myself to medications and sadly it took all this damage to find out .SA can offer us all the advice but its down to us to work it all out for ourselves .

I am having an excruciating weekend with symptoms, constant suicidal thoughts the worst  .my withdrawl must be exacerbated by a nasty virus that has me wiped out .

I often wonder what goes on in these fancy treatment centres that cost 50  grand a month ,they must know something us normal folk don't .Were is the way out of the constant nightmare I often wonder .

I can painfully understand how so many people get pollydruged because we need relief ,its exhausting .

 

Take care grace some day hopefully we will have comfort and peace .  

 

[savinggrace]

Thank you for responding, Powerback.

 

I am still asking the question,  "would a much faster taper land me where I am today, which is just making it through each day, but drug free,  or would I be in worse hell for a longer time.  The thing is, yesterday, while not sleeping, I realized that at the rate I am able to taper JUST ONE of my drugs (the easiest one supposedly) it would take me 10 years to get off it, and that leaves 2 drugs that are considered much much harder to taper.  I just keep wondering if those who cold-turkeyed because they didn't know better, or they were jerked off their meds for other reasons, aren't kinda lucky, in a way, because as it is, I am suffering anyway, hanging by a thread, I am 63, there aren't enough years left for me to even have hope for being rid of these things and thus life will never get any better than this.  Then, at my age, with multiple iatrongenic illness, and other un-related illness, what's gonna happen when I end up in the hospital and or need medical intervention?  They would likely put me back on the drugs I have paid for with my life, and worse hell will break out.  I know I am supposed to "take it one day at a time" and I do, for the most part, because I have no choice, but really what is the point of hanging in there and suffering until the end at which time I will probably suffer even more...

 

When the first doctor handed me the first drug script back when I was 26 years old he should have said, "Take this once a day and ruin your life."  That is essentially what he did.  Had I known then what I know now I would have quit my job which I loved, and done anything and everything to keep from EVER  putting one of these drugs into my body.  The internet didn't exist then.  I plead ignorance to what happened to me.  Oh, yeah, and trust and faith that the doctors know what they are doing when they scribble down scripts for poison and hand them to us.

 

NOBODY believes me that I shouldn't just go into rehab and "tough it out" and I will get better...NOBODY...except my husband who is witness to the devastation these drugs have caused me and suffers along side me, sacrificing HIS quality of life to keep me alive.

 

if anyone can shed any light unto how we are feeling, or will tell us we have no choice but to do what we are doing, please do.  We are both asking the same question,  though Powerback, battling just one drug you DO have a chance.  (not knowing the details of your journey, admittedly)

 

Grace

[Gridley]

I am so sorry you are going through this.  I am older than you, and much of the rest of my life will likely be taken up with tapering my three drugs.  From reading the many stories of those who tapered too fast, my answer to your question is that a too fast taper would not "land you where you are today but drug free" but rather in a much worse place where you would be wishing to be back where you are today just making it through each day.  Just making it through each day is better than not making it through each day.  

 

Tapering and withdrawal are not linear.  Things could get better.  They have for me recently.  I'm in the beginning of year 3 of a multi-year taper and I've seen improvements in life quality.  

 

I hope you find some peace and relief.

 

Gridley

 

 

[powerback]

1 hour ago, savinggrace said:

Thank you for responding, Powerback.

 

I am still asking the question,  "would a much faster taper land me where I am today, which is just making it through each day, but drug free,  or would I be in worse hell for a longer time.  The thing is, yesterday, while not sleeping, I realized that at the rate I am able to taper JUST ONE of my drugs (the easiest one supposedly) it would take me 10 years to get off it, and that leaves 2 drugs that are considered much much harder to taper.  I just keep wondering if those who cold-turkeyed because they didn't know better, or they were jerked off their meds for other reasons, aren't kinda lucky, in a way, because as it is, I am suffering anyway, hanging by a thread, I am 63, there aren't enough years left for me to even have hope for being rid of these things and thus life will never get any better than this.  Then, at my age, with multiple iatrongenic illness, and other un-related illness, what's gonna happen when I end up in the hospital and or need medical intervention?  They would likely put me back on the drugs I have paid for with my life, and worse hell will break out.  I know I am supposed to "take it one day at a time" and I do, for the most part, because I have no choice, but really what is the point of hanging in there and suffering until the end at which time I will probably suffer even more...

 

When the first doctor handed me the first drug script back when I was 26 years old he should have said, "Take this once a day and ruin your life."  That is essentially what he did.  Had I known then what I know now I would have quit my job which I loved, and done anything and everything to keep from EVER  putting one of these drugs into my body.  The internet didn't exist then.  I plead ignorance to what happened to me.  Oh, yeah, and trust and faith that the doctors know what they are doing when they scribble down scripts for poison and hand them to us.

 

NOBODY believes me that I shouldn't just go into rehab and "tough it out" and I will get better...NOBODY...except my husband who is witness to the devastation these drugs have caused me and suffers along side me, sacrificing HIS quality of life to keep me alive.

 

if anyone can shed any light unto how we are feeling, or will tell us we have no choice but to do what we are doing, please do.  We are both asking the same question,  though Powerback, battling just one drug you DO have a chance.  (not knowing the details of your journey, admittedly)

 

Grace

Hi SG once again another nice piece from your heart and soul ,I'm honoured to read it ,you might not feel it but you are making a big difference posting your fears .

there is the question for you ,if you could at least be stable and have a life ,one day doctors will be found accountable for there actions but they   are  soldiers in a big army of hierarchy .just look how long its taking for the #me too movement we see now .

 

There's been a very interesting topic on the radio in Ireland about a pain med called versatus taking off the market here and there was uproar ,the amount of people that rang in to tell there story of agony ,the strength in numbers forced a conversation in government buildings ,I see the shift starting to change in the public consciousness   .

 

Keep it going grace and keep up the fight  every one of our voices count .

 

I agree I'm just battling the one drug ,it does give me some solace but I question the fact I don't have the relaxing  affects of a benzo in my very bad times [don't go to my thread ,danger ].

I feel so sad for my partner also .she has been robbed of me for mostly of 2 years ,I have daily thoughts of letting her go so she can have a life ,so sad .

We keep going SG .Take care .

[savinggrace]

Hi Powerback,

Thanks for your kind support and validation of my fears.  I often wonder if I just think too much, or if others are just afraid to put the words down on paper (or the internet) to see just what a miserable/no win situation we are in!  I actually work very hard on not ruminating on this losing battle that I am fighting.  For more than a decade I have realized that I am painted into a corner...for more than two decades I have been paying for it.  I am not sure I will live one more decade (longevity is not in my genes) though I live a super healthy lifestyle (well, as healthy as tapering/w/d allows me to) so I may live longer.  I don't want to.  I try hard not to think about what will happen when some acute illness that the medical world has to get involved in happens.  I really don't go to doctors now, even in excruciating pain for anything, unless I think it is something that needs to be diagnosed at which time I come home and start "doing my homework" on how to deal with whatever it is without interfering w/ my ridiculously slow taper.  Usually it boils down to toughing out whatever comes my way, but I feel myself getting weaker and sicker as I can't eat the proper diet or take the necessary supplements to heal my leaky gut, or even take a tylenol when my back hurts so much I feel like killing myself.  Ice/heat are my only remedies...distraction, prayers, laughter (though I have little social interaction so it's hard to find things to laugh about) are my only medicine, really.  Last night on night ten of a 5 mg. cut of trileptal (only 150 to go...the first 150 took me 3 years), I sweated and "shocked" and had nightmares through the night.  5 mg. was barely a 3% cut of a drug that most can taper in months not a decade.  However, after 15 years on 300 mg. am I surprised that this is nearly killing me? NO.

 

I feel for you about the benzos...I really do.  The thing is at this point they are not sedating me at all; i think they stopped doing that w/i weeks of starting them, though I didn't know it then.  All they are doing is keeping me out of benzo w/d which I know is worse hell than this.  So, though you long for the calming effect of the benzos, it would be a very,, very short fix with a huge price.

 

I am just amazed at how much power just one "bead" or speck of these drugs has over our brains.  People who have not experienced this don't believe it.  When I mention the book "Worse Than Heroin" to people they look at me with a skeptical look and w/o saying it aloud are saying, "Yeah, keep telling yourself that."  So I don't try to get anyone to understand any more.

 

If your partner wants to stay, he/she loves you.  Don't push her/him away.  Our partners are free to go when they can't take it any more.  If they stay, we are the lucky ones.  Sometimes I wish my husband would go live a full happy life but after 46 years together I don't think I would last a day.  I know I am lucky to have him, but honestly, it really doesn't erase much of the misery.  I don't really feel less alone; the problems, for the most part, are mine.  He is mostly an observer and a supportive listener but he can't begin to understand what this feels like inside and out.

 

Whew, there you go...another raw venting of my fears.  You sound young enough and determined enough to be able to conquer those beads...one bead at a time...one moment at a time...one hour at a time....one day at a time.

 

Keep up the good fight.

Grace

[savinggrace]

On 2/20/2018 at 3:31 PM, Gridley said:

I am so sorry you are going through this.  I am older than you, and much of the rest of my life will likely be taken up with tapering my three drugs.  From reading the many stories of those who tapered too fast, my answer to your question is that a too fast taper would not "land you where you are today but drug free" but rather in a much worse place where you would be wishing to be back where you are today just making it through each day.  Just making it through each day is better than not making it through each day.  

 

Tapering and withdrawal are not linear.  Things could get better.  They have for me recently.  I'm in the beginning of year 3 of a multi-year taper and I've seen improvements in life quality.  

 

I hope you find some peace and relief.

 

Gridley

 

 

Thank you Gridley.  I really needed someone to give me an honest answer.  The truth hurts, but I know you are right.  We can search and search for an easier path...an alternate path...but it doesn't exist, and I know that.  I just get weak once in a while, and doubt myself, though I usually follow my gut no matter what anyone says and my gut has always told me this is the only way.   It doesn't look like you have such an easy road to travel left yourself.  For me, if I didn't have so much "co-morbid" illness, outside of drug-induced illness, it would help.  I really can't treat most anything that is wrong w/ me (like my GI tract...leaky gut big time) because the supplements get in the way every time.  I am so vitamin, mineral, hormone deficient I literally feel myself dying excruciatingly slowly, but EVERYTHING interferes with my taper, so I just tough out everything that comes my way, and it is A LOT!  I do EVERYTHING I can, health-wise, but without the proper nutrients I just can't get better.  I have read all of "Beyond Meds" in an attempt to help myself and believe most everything she says.  It's a viscous cycle...Gia advocates that until you are "healthy enough" to start tapering, you shouldn't even try.  (ie:  fixing your leaky gut) and yet to do so, I have to be able to tolerate supplements and nutritious foods that my body totally rejects.  I wasn't healthy at the start of my taper; heck, I haven't been healthy my whole life, but I kept living it until I couldn't any longer.  Now I am on on-looker.

 

One day at a time...one minute at a time...grab the "moments" when you can and cherish them...they may be fleeting, and infrequent,  but they keep me hanging in there.  I am determined to stay well enough to hold and watch my newest granddaughter grow up, and who will be just 2 miles away in a couple months.

 

Thanks for speaking the truth, Gridley.  I will read your story soon.  Your drug mix is that much different than mine, though I don't really know how your tapering is going.  I shall read about you soon.  Take care.

 

Grace

[Downbutnotout]

On 2/18/2018 at 2:45 PM, savinggrace said:

I know better...I know better...I know better...or do I?

 

I have been reading a book (admittedly, fiction but quotes addiction/dependence issues from AA a lot) about a woman who was abusing benzos and painkillers.  While i consider myself an addict, because I am dependent on my drugs,  I find myself differentiating myself from "addicts" because they abuse their drugs.  That said, dependence/abuse both end people up in the same place for the most part.  I have NEVER taken more than my prescribed dose, and because I didn't know better, I never even upped my dose, even if I destabiized...I have always just ridden out the waves of whatever comes my way.  Not much good comes my way though.  My life is totally centered on my excruciatingly slow descent off these drugs and as I say every time (I'm sorry) I won't live long enough to taper off them.

 

Here is the phrase from AA that is eating at me...."Half measures don't work."  Historically, my body has told me that I am hyper-hyper sensitive and this way is the only way.  It's kind of like saying I'll just cut down by one beer a day...or is it?  I really believe the tenets of SA; I really do...slow, steady, simply...but mine has to be so slow and so steady it's not at all simple and I will die dependent on these drugs.  Lord knows what will happen as I age and medical intervention takes over (or doesn't; I do have a medical directive)  Meanwhile, I googled detox centers, AGAIN, today, almost laughing at their claims of getting the benzos off the receptors in a matter of days.  And then what?  Am I fooling myself?  Do I belong at NA, AA, whatever?  Am I taking the easy route or the only route?  Please forgive me for doubting myself....sometimes I wish I had ignorantly C/T'd, and then at least the drugs would be gone and this hell I am in might have an end some day...

 

Grace

Why are you taking such a slow taper? Is it really helping you. I was taken off really fast, and am not doing that great. I updosed to 6 beads, but I don’t know if it’s really doing anything. It’s a very small amount. I’m wondering if it’s like I’m taking nothing. I know I’m in the worst depression I’ve ever been in, can’t feel any joy or happiness . I’ve been in lots of depressions, and am wondering if my brain is going to allow me to ever be normal again without adding another antidepressant.  I took effexor for 25 years or more. I thought I functioned well when taking it. It failed me the last time around. They doctor wanted me on benzos but I didn’t like them. They made me too depressed after a while. All the “pills” she gave me made me hyper and manic. So, I’m figuring that ship has sailed. All the typical things. I also can’t enjoy food. I’m wondering why someone would be invested in this process for years if you’re not seeing results? I’m a lot older than you. 

[savinggrace]

Well, I believe I would have killed myself by now if I go any faster.  Even my psychiatrist who knows how hyper-sensitive I am, agrees, that going faster than my body is telling me I can handle will likely land me in a hospital, tied to a bed, being pumped full of more drugs.  I am not "choosing" this slow taper because I enjoy being tortured.  I have tried the faster route.  The slower route.   The slowest route.  The slowest route is the only route that has allowed me not to be completely bed-ridden.  I think I am one of the unfortunate few, who for a myriad of reasons, genetic, environmental, physical etc. cannot go any faster than a snail's pace.  I actually believe what I read here.  I believe it because I feel it.  My benzo receptors have been destroyed, my brain has been re-modeled and after 36 years of drugs, there is no quick fix.  It may take 36 years to undo the damage.  Do you know better?

 

Invested in this process...hmmm...interesting choice of words.  Sounds like a choice.  I don't really have one, but then, everyone's journey is different.  I am happy for you that you are able to taper quickly.  I think you need to read more stories here from people who unwittingly got put on these drugs, and drug cocktails, many decades ago, w/ no internet to guide us.  We trusted our doctors back then.  And then it was too late.  You sound like one of the lucky ones being able to survive a fast taper..."Not doing that great?" ....I would kill to be able to utter those words about this hell I am in.  Depression?  The least of my worries.  BTW,  my very first cut of a benzo, a 5% cut, gave me a seizure on the 5th day.  I learned right then how long and hard and probably never-ending this was going to be.

 

I am not going to defend myself any longer from someone who clearly is having an easier time than I am.  I am the most determined, strongest, take-charge person I know, and if you deem me otherwise, there is nothing I can do about it.  That said, it makes it very difficult for others to voice their true feelings and real struggles when others who do are treated w/ such arrogance.  Do you really think I didn't think of going faster because I am miserable anyway?  You really don't know how many hurdles I am up against.  I think, perhaps, you should think twice before you judge someone so harshly.

 

The fact that I am still trying at all is nothing short of amazing, whether you think so or not.

 

This is not my usual way of addressing people but your lack of compassion and your judgment was quite harsh.  Perhaps you should read Gridley's response and learn something.

 

My wish for you is that you learn to  treat people who are really struggling with the compassion and respect that they need and deserve.  We really shouldn't compare each other's ability to taper.  Anyone here is doing the best they can...

 

Grace

[Downbutnotout]

17 minutes ago, savinggrace said:

Well, I believe I would have killed myself by now if I go any faster.  Even my psychiatrist who knows how hyper-sensitive I am, agrees, that going faster than my body is telling me I can handle will likely land me in a hospital, tied to a bed, being pumped full of more drugs.  I am not "choosing" this slow taper because I enjoy being tortured.  I have tried the faster route.  The slower route.   The slowest route.  The slowest route is the only route that has allowed me not to be completely bed-ridden.  I think I am one of the unfortunate few, who for a myriad of reasons, genetic, environmental, physical etc. cannot go any faster than a snail's pace.  I actually believe what I read here.  I believe it because I feel it.  My benzo receptors have been destroyed, my brain has been re-modeled and after 36 years of drugs, there is no quick fix.  It may take 36 years to undo the damage.  Do you know better?

 

Invested in this process...hmmm...interesting choice of words.  Sounds like a choice.  I don't really have one, but then, everyone's journey is different.  I am happy for you that you are able to taper quickly.  I think you need to read more stories here from people who unwittingly got put on these drugs, and drug cocktails, many decades ago, w/ no internet to guide us.  We trusted our doctors back then.  And then it was too late.  You sound like one of the lucky ones being able to survive a fast taper..."Not doing that great?" ....I would kill to be able to utter those words about this hell I am in.  Depression?  The least of my worries.  BTW,  my very first cut of a benzo, a 5% cut, gave me a seizure on the 5th day.  I learned right then how long and hard and probably never-ending this was going to be.

 

I am not going to defend myself any longer from someone who clearly is having an easier time than I am.  I am the most determined, strongest, take-charge person I know, and if you deem me otherwise, there is nothing I can do about it.  That said, it makes it very difficult for others to voice their true feelings and real struggles when others who do are treated w/ such arrogance.  Do you really think I didn't think of going faster because I am miserable anyway?  You really don't know how many hurdles I am up against.  I think, perhaps, you should think twice before you judge someone so harshly.

 

The fact that I am still trying at all is nothing short of amazing, whether you think so or not.

 

This is not my usual way of addressing people but your lack of compassion and your judgment was quite harsh.  Perhaps you should read Gridley's response and learn something.

 

My wish for you is that you learn to  treat people who are really struggling with the compassion and respect that they need and deserve.  We really shouldn't compare each other's ability to taper.  Anyone here is doing the best they can...

 

Grace

Oh my goodness. You completely misunderstood me. I am trying to figure out if this process works? I am having a terrible time. I am so depressed that I am constantly having si thoughts. I also am also constantly anxious. I can’t seem to take vitamins or anything else because it hypes up my system. I got very, manic on the last few things I was given, and it has scared me a lot. I guess I was looking for reassurance that this is the way to go. I am not having an easy time at all. I’ve been miserable for 8 months.  So, don’t think I’m judging you at all. I’m not.  It sounds like you are a very strong person. I’m not having an easy time. Believe me. I am so sorry if I put that in the wrong way. I am not judging you at all. I think you have a lot of courage and determination. I am also convinced that my neurotransmitters are also shot. I am so sorry.  I’m sorry if you thought I was putting you down. That was not my intention. 

[Gridley]

savinggrace, you are doing it the right way, listening to your body and acting on how you feel.  You have my respect.

[samanthaelizabeth]

6 hours ago, Terry4949 said:

I know this is not a site for advising medications but I have reach the line in withdrawel where I am at my limit as to what I can endure 4 years of hell and nearly 12 months off all meds but I need to seek help before it’s to late the question I have is if I need to reinstate a med to help me out of this hell what is the best form to aim at , the only one that ever seemed to help had no depression on was Effexor but serotonin ramps me up so bad , I know reinstatement can be a crap shoot but I honestly can’t go on anymore I’m reluctant to go back to Effexor as it pooped out and the side effects were intolerable has anyone stabilise using another med just to enough to keep them going , if you look at my history you can see I was given a lot of medication over a short period but none help but I think the Effexor withdrawel was so strong and I didn’t give them much chance , has anyone had any luck reinstating another drug 

 

2 minutes ago, Downbutnotout said:

Oh my goodness. You completely misunderstood me. I am trying to figure out if this process works? I am having a terrible time. I am so depressed that I am constantly having si thoughts. I also am also constantly anxious. I can’t seem to take vitamins or anything else because it hypes up my system. I got very, manic on the last few things I was given, and it has scared me a lot. I guess I was looking for reassurance that this is the way to go. I am not having an easy time at all. I’ve been miserable for 8 months.  So, don’t think I’m judging you at all. I’m not.  It sounds like you are a very strong person. I’m not having an easy time. Believe me. I am so sorry if I put that in the wrong way. I am not judging you at all. I think you have a lot of courage and determination. 

@DownbutnotoutI don't think you should start tapering if you are not stable. IMO.  I am definitely not stable, my Zoloft is no longer working.  So I am going back to the doctor for an add-on rather than switching meds.  For now, I feel that my life is better with the meds.  Had I known 20 years ago about any of this, I wouldn't be in this situation now. But it is what is. so rather than roll the dice in hopes that I will be happier once off my AD, I am staying on it until I am back to myself.  When I feel better perhaps I will consider tapering, perhaps not.  Life is too short and I have no desire to suffer not knowing what the end result will be Even Dr. Shipko who I spoke with told me that tapering after the amount of time I have been on the drug is a big question mark.  So I guess I am medicated for life and I'm fine with that.

[Downbutnotout]

5 minutes ago, samanthaelizabeth said:

 

@DownbutnotoutI don't think you should start tapering if you are not stable. IMO.  I am definitely not stable, my Zoloft is no longer working.  So I am going back to the doctor for an add-on rather than switching meds.  For now, I feel that my life is better with the meds.  Had I known 20 years ago about any of this, I wouldn't be in this situation now. But it is what is. so rather than roll the dice in hopes that I will be happier once off my AD, I am staying on it until I am back to myself.  When I feel better perhaps I will consider tapering, perhaps not.  Life is too short and I have no desire to suffer not knowing what the end result will be Even Dr. Shipko who I spoke with told me that tapering after the amount of time I have been on the drug is a big question mark.  So I guess I am medicated for life and I'm fine with that.

Thanks for your input. 

[savinggrace]

1 hour ago, Downbutnotout said:

Why are you taking such a slow taper? Is it really helping you. I was taken off really fast, and am not doing that great. I updosed to 6 beads, but I don’t know if it’s really doing anything. It’s a very small amount. I’m wondering if it’s like I’m taking nothing. I know I’m in the worst depression I’ve ever been in, can’t feel any joy or happiness . I’ve been in lots of depressions, and am wondering if my brain is going to allow me to ever be normal again without adding another antidepressant.  I took effexor for 25 years or more. I thought I functioned well when taking it. It failed me the last time around. They doctor wanted me on benzos but I didn’t like them. They made me too depressed after a while. All the “pills” she gave me made me hyper and manic. So, I’m figuring that ship has sailed. All the typical things. I also can’t enjoy food. I’m wondering why someone would be invested in this process for years if you’re not seeing results? I’m a lot older than you. 

Apology accepted...really.  I think, though, that you need to choose your words more carefully.  Writing is a tricky thing when there are no other visual, emotional signals to pick up on.  Your opening and closing sentences were downright aggressive and judgmental.  I understand now, and believe you, that that was not your intent.  We all need to remember here that we are all suffering and we cannot and should not kick anyone when they are down.  If you can't seem to find the right words, then maybe not writing at all is better.  Perhaps if you had opened with, "I  (too) am trying to figure out if this process works?  this whole misunderstanding wouldn't have happened.  I am sorry for your suffering and I am here to listen, because, believe me, I get it and I have been through through too much to ever judge anyone on their ability to do what we are trying to do.

 

My best,

Grace

[Downbutnotout]

3 minutes ago, savinggrace said:

Apology accepted...really.  I think, though, that you need to choose your words more carefully.  Writing is a tricky thing when there are no other visual, emotional signals to pick up on.  Your opening and closing sentences were downright aggressive and judgmental.  I understand now, and believe you, that that was not your intent.  We all need to remember here that we are all suffering and we cannot and should not kick anyone when they are down.  If you can't seem to find the right words, then maybe not writing at all is better.  Perhaps if you had opened with, "I  (too) am trying to figure out if this process works?  this whole misunderstanding wouldn't have happened.  I am sorry for your suffering and I am here to listen, because, believe me, I get it and I have been through through too much to ever judge anyone on their ability to do what we are trying to do.

 

My best,

Grace

I reread it, and you are absolutely correct. I am so glad that you accepted my apology because I was beating myself up about it. So, I apologize again.  It shows what a person of great character you are by the fact that you saw it in your heart to reply.  You certainly didn’t have to. I have been through some tumultuous months (new medication tries one on top of the other.) that really terrified and humiliated me.  I had terrible reactions.  It hasn’t been as easy as I may have conveyed. I am 67 years old. 

[savinggrace]

This process, unfortunately, seldom brings out the best in us. For me, though, compassion and giving to others has been the ONLY good thing. 

 

I have not not made a single drug change in 15 years. Oh, how my doctor has tried!  In fact, every doctor I go to pretty much gets angry w/ my refusal of their drugs. 

 

Good luck on whatever path path you choose to follow. Sometimes being older but wiser actually hurts because if we knew then what we know now...

 

Grace

[Gridley]

Love and healing to both of you.

[Downbutnotout]

8 minutes ago, Gridley said:

Love and healing to both of you.

Thank you Gridley. Same to you. 

[savinggrace]

Awww...you’re sweet. We’re good!  

 

Grace

[Altostrata]

Please post advice to Terry4949, DownButNotOut, and samanthaelizabeth in their respective topics, and leave this one to savinggrace.

 

It's one thing to emphathize with any member here and share your experiences and opinions, but it's another thing to take over someone's Intro topic and make it All About You. Any more of this will get warnings.

[samanthaelizabeth]

28 minutes ago, Altostrata said:

Please post advice to Terry4949, DownButNotOut, and samanthaelizabeth in their respective topics, and leave this one to savinggrace.

 

It's one thing to emphathize with any member here and share your experiences and opinions, but it's another thing to take over someone's Intro topic and make it All About You. Any more of this will get warnings.

My apologies.

[powerback]

12 hours ago, savinggrace said:

Hi Powerback,

Thanks for your kind support and validation of my fears.  I often wonder if I just think too much, or if others are just afraid to put the words down on paper (or the internet) to see just what a miserable/no win situation we are in!  I actually work very hard on not ruminating on this losing battle that I am fighting.  For more than a decade I have realized that I am painted into a corner...for more than two decades I have been paying for it.  I am not sure I will live one more decade (longevity is not in my genes) though I live a super healthy lifestyle (well, as healthy as tapering/w/d allows me to) so I may live longer.  I don't want to.  I try hard not to think about what will happen when some acute illness that the medical world has to get involved in happens.  I really don't go to doctors now, even in excruciating pain for anything, unless I think it is something that needs to be diagnosed at which time I come home and start "doing my homework" on how to deal with whatever it is without interfering w/ my ridiculously slow taper.  Usually it boils down to toughing out whatever comes my way, but I feel myself getting weaker and sicker as I can't eat the proper diet or take the necessary supplements to heal my leaky gut, or even take a tylenol when my back hurts so much I feel like killing myself.  Ice/heat are my only remedies...distraction, prayers, laughter (though I have little social interaction so it's hard to find things to laugh about) are my only medicine, really.  Last night on night ten of a 5 mg. cut of trileptal (only 150 to go...the first 150 took me 3 years), I sweated and "shocked" and had nightmares through the night.  5 mg. was barely a 3% cut of a drug that most can taper in months not a decade.  However, after 15 years on 300 mg. am I surprised that this is nearly killing me? NO.

 

I feel for you about the benzos...I really do.  The thing is at this point they are not sedating me at all; i think they stopped doing that w/i weeks of starting them, though I didn't know it then.  All they are doing is keeping me out of benzo w/d which I know is worse hell than this.  So, though you long for the calming effect of the benzos, it would be a very,, very short fix with a huge price.

 

I am just amazed at how much power just one "bead" or speck of these drugs has over our brains.  People who have not experienced this don't believe it.  When I mention the book "Worse Than Heroin" to people they look at me with a skeptical look and w/o saying it aloud are saying, "Yeah, keep telling yourself that."  So I don't try to get anyone to understand any more.

 

If your partner wants to stay, he/she loves you.  Don't push her/him away.  Our partners are free to go when they can't take it any more.  If they stay, we are the lucky ones.  Sometimes I wish my husband would go live a full happy life but after 46 years together I don't think I would last a day.  I know I am lucky to have him, but honestly, it really doesn't erase much of the misery.  I don't really feel less alone; the problems, for the most part, are mine.  He is mostly an observer and a supportive listener but he can't begin to understand what this feels like inside and out.

 

Whew, there you go...another raw venting of my fears.  You sound young enough and determined enough to be able to conquer those beads...one bead at a time...one moment at a time...one hour at a time....one day at a time.

 

Keep up the good fight.

Grace

Once again SG I'm honoured and I bow to your soul coming out of your heart .you wont even see the positive impact on others that would read it .bless you .

You are correct about the benzo and I take back what I said ,I shouldn't be so flippant when it comes to drugs and other members struggles to get off them .

As Eckhart tolle says "you cant bring consciousness to the unconscious".i myself am in a much better   place with not wasting my time anymore trying to explain to people .I'm in a much better place with my mam because I don't go near her with any of my thoughts anymore ,it got bad for too long .The funny thing is I said I have SA for all that support and it seemed she was insulted lol,i cant win .I tell her I welcome her love and concern all the same .the biggest thing I wanted to get across to her was "stop trying to fix this",this is a revelation on my part ,I just hope she does the same .its bound to relieve pressure and stress on her part .

 

I'm youngish  but old enough that i worry about time running out ,I think if it happened 10 years ago I wouldn't have the same worries,this is why I struggle with acceptance .

 

You are very correct when it comes to my partner ,she has all the gritty details but ive been over the top with catastrophizing my situation ,I cant take this back sadly .The last few months I've worked hard on not constantly bringing up my fears and this week I accepted her care rather than push her away .living in todays society is very hard though ,with facebook and "celebrity culture ".theres a show called first dates on tv over here and she watches it [I have myself],but I'm so sick I cant bring myself to watch it .there basically brutal with what they expect from a partner   and lets face it withdrawl cripples a person of everything.

 

I think I'm running out of patience and I might just be realistic in thinking how can I expect her to give up her life .its sad but I am trying to work to a solution rather than bury my head in the sand ,like I did for many years through binge drinking [happily and proudly  sober  now ].

 

I worry this is my baseline state [anxiety ] because I remember feeling like this as a kid ,so this throws up the whole meds debate again .

Thanks SG ,nice chatting to you .

Take care .

[savinggrace]

Help!!!

 

I am going to post this in the benzo forum as well.  I am really embarrassed as I have been taking these d@#n drugs for so long, I don't usually make this mistake.  That said, I have missed not one, but two of my valium doses in what my husband and I are thinking is in the last 5 days.  I take my valium in divided doses, and my second dose is usually around my first awakening if it is 4 a.m. or later.  So it seems that twice in the last five days (not important how or why we know that) I have not taken that second dose which, together,  is the equivalent of 12.84 mg!  Needless to say, I just discovered this but have been deathly ill and could not pinpoint the reason.  (I often can)  We know I did not do this two mornings in a row as my husband gave me my early morning dose this a.m. as I was so sick I couldn't get out of bed.  I have every w/d symptom in the book and am totally bed-ridden.  Should I take a little bit of this right now? I don't usually take my first evening dose until 9 pm.  I am wondering if this much of a cut in less than 7 days is dangerous for me.  At the onset of my tapering about a decade ago, I cut 1 mg./night for 5 nights and had a near-seizure (when I described what happened to my psychiatrist he told me I was minutes away from a seizure)  I am pretty sure he was right because I had the common sense to take some valium then and it stopped all the near-seizure symptoms immediately.  I would really appreciate some guidance here.  I am pretty sick.  I know valium has a long half-life but almost 13 mg. cut for me in about 5 days is way too much.

 

thank you for any advice anyone can give.

Grace

[savinggrace]

Hi,

 

Nothing much has changed with me. I had decided to do a long hold and then taper (something?) again. I have had a very worrisome symptom that I suspect is w/d related. I awaken around dawn feeling like I am suffocating. It lasts until I get up and about although sometimes it really doesn’t go away. I recently went

to the ER because I was panicky after 3 days straight. My heart and lungs check out fine. 

 

I think it is my meds. Does Valium build up to even more toxic doses the longer one takes it?  I will be 64 next week. I wonder if I am metabolizing slower and/or my trileptal taper actually increased my blood levels of Valium. 

 

My doctor says it is not my drugs. I think it is. My brain sets off an alarm and wakes me to tell me I am not breathing even though my oxygen level reads normal, though my heart rate is usually pretty slow. This is really scaring me and I can’t imagibe what would happen to me if I get yanked off these drugs. This suffocation feeling is the same one I used to get when I took a painkiller for my back and it started wearing off. In fact everything I try to take to get better ends up making me feel this way. No one is taking it seriously because the heart and lung tests are fine. 

 

Is rhis a withdrawal symptom or maybe caused by a build up

of 16 years of Valium...4 years at this dose but impacted by the 50% trileptal cut?

 

i know no one knows exactly what to do next but wondering how common this is....

 

Grace

 

[WantoffVen]

God bless you, Grace. I am currently 65 1/2 years old and tapering Venlafaxine. I have at least two more years to go and then I have Vallium after that. Here's my motto I might not get off these drugs before I die but I'm gonna die trying. Have to infuse a bit of humor sometimes. But on a more serious note your situation is much worse than mine from the standpoint you are on more drugs and have other serious health issues so please take my comment to be humorous. I will pray for you. BTW, I'm your next door neighbor I live in Illinois.

[FarmGirlWorks]

1 hour ago, WantoffVen said:

Here's my motto I might not get off these drugs before I die but I'm gonna die trying.

❤️❤️❤️ the motto.

[savinggrace]

Wantoffven,

Thanks for replying. I absolutely know I want off the drugs but I am gonna die trying. The problem is I am dying a little faster than I had hoped. You are right. I am a complicated case..:many co-morbid conditions and a lifelong history of psych drugs (well not until 26...too long). No internet to help me. I now am on my own. No one has any answers. I was living life a little but I get closer and closer to bedridden each day. This is no way to live. These drugs should be illegal. My biggest regret is that I won’t live long enough to lobby against very judicious use with very restricted enforcement. I am amused at how psych drugs get very little attention...it’s all about alcohol and opioids. The truth is I would have rather been dependent on either of those because recovery is possible with a strong will which I have. My dependence is physical. I have no good effects from this poison other than keeping me out of insane withdrawal. My body just cannot manage this benzo withdrawal while I am suffering from so many conditions. I haven’t tapered anything for 8 months.  Have no idea what to do...about anything. It’s lonely and scary  I have nearly stopped eating and sleeping.  I keep wondering how long my body can sustain this. 

 

I.am definitely dying trying! Just had hoped to see my grandkids grow up a bit more. 

Grace

[Rabe]

Hi Grace...I wanted you to know I empathize and sympathize.  I have been on a benzo for 30 years?  Then started tapering because my doctor doubled the dose and added other meds and I crashed.  It is awful at any age but I have to say that doing this at the time of your life you thought you'd be enjoying your family and grandchildren is indeed really really hard.  Family cannot possibly understand, kids tend to expect one to be there always, and yes the other health issues cause more problems.  It becomes such a viscous circle trying to balance everything.  I am SO hypersensitive to everything too...every med I try, foods, lotions...everything it seems.  I am so sorry you are dealing with all this.  I will say that since holding from the rapid CLonazepam partial taper a year ago Sept and the first Viibryd tapers last May and June I am feeling more stable.  I have said as well..if I were on doses that were not needing compounding etc I would just stay on the doses I could and live out the rest of my life,  I get it.  Take care of you!  

[Survivor1]

Hi Savinggrace,

 

 I haven't posted on your thread before, but wanted to offer some support in your struggles.  I know you are in a bad situation, and I don't have any words of advice.  I am thinking of you and hope you live to find some relief somewhere ...

 

take care.

[Gracee]

Hi Savinggrace, I identify with your thinking and what you are experiencing.   I am 73.   Aging is difficult enough on our bodies, but combined with AD dependency and withdrawal, end of life looks and feels like hell.   I'm sorry to be writing such a depressing note.  I really just wanted to point out that there are so many others like us coming along who will go to their graves, nearly helplessly addicted to PharmaPoison.   Best to you.  

G. 

[savinggrace]

Thank you, Gracee, Farm Girl, Survivor and WantoffVen for your caring comments since I last visited here.

 

I have felt like even hanging around here was a bit futile and adding to my despair but I am absolutely at the point that I need to move forward.  I KNOW that much of my disease/illness/pain is medicine related and I can't help but believe that every little bit less of the poison I take, will help me.

 

I spent several hours a week ago reading the thread (albeit most of it was old, 2012 or so) about withdrawal, tolerance withdrawal, long holds and kindling.  While trying to mentally prepare myself to start chipping away at my valium (super slow...like .5mg/year at first and then evaluate), I read about the damage of long holds and this kindling phenomena.  As I have always adhered to the notion that long holds give our brains more time to re-model, I guess at the same time they give more time for more damage too.  I am just so confused by this.  Since I have done what can barely be called tapering, and yet I HAVE reduced my total toxic load by half from its peak,  have I put myself in a position that I cannot be successful with any kind of taper, no matter how slow I go?  I realize that my body and brain are super-sensitized...ridiculously sensitized.  Does that mean I can't move forward no matter the pace?  I have read and read and read about kindling and long holds and it just makes no sense to mean.  I read Rhiannon's post on regrowing the brain years ago and I always have reassured myself that I was doing my brain a favor by being patient, listening to my gut and paying attention to my symptoms, and proceeding accordingly, but I go on benzo board and read some posts about kindling and long holds here and my perhaps, misinterpreted, impression is that they  are considered an almost irreversible mistake.   I know I could post on the benzo thread as well but it seems like this question applies to all psych meds.

 

OF note, I was never stable before tapering or during tapering.  I just get a little more stable usually meaning I sleep better which helps me handle all the other symptoms better.   As I age, nearing 65, medical conditions, some quite serious, are rearing their ugly heads way too early, considering I have had a super clean lifestyle, am not overweight at all, never really drank much (social, and not for many years now), never smoked, etc, always exercised...

 

Thank you for any thoughts on this.

Grace

[Eastcoastgirl]

On 2/17/2019 at 1:42 PM, savinggrace said:

Thank you, Gracee, Farm Girl, Survivor and WantoffVen for your caring comments since I last visited here.

 

I have felt like even hanging around here was a bit futile and adding to my despair but I am absolutely at the point that I need to move forward.  I KNOW that much of my disease/illness/pain is medicine related and I can't help but believe that every little bit less of the poison I take, will help me.

 

I spent several hours a week ago reading the thread (albeit most of it was old, 2012 or so) about withdrawal, tolerance withdrawal, long holds and kindling.  While trying to mentally prepare myself to start chipping away at my valium (super slow...like .5mg/year at first and then evaluate), I read about the damage of long holds and this kindling phenomena.  As I have always adhered to the notion that long holds give our brains more time to re-model, I guess at the same time they give more time for more damage too.  I am just so confused by this.  Since I have done what can barely be called tapering, and yet I HAVE reduced my total toxic load by half from its peak,  have I put myself in a position that I cannot be successful with any kind of taper, no matter how slow I go?  I realize that my body and brain are super-sensitized...ridiculously sensitized.  Does that mean I can't move forward no matter the pace?  I have read and read and read about kindling and long holds and it just makes no sense to mean.  I read Rhiannon's post on regrowing the brain years ago and I always have reassured myself that I was doing my brain a favor by being patient, listening to my gut and paying attention to my symptoms, and proceeding accordingly, but I go on benzo board and read some posts about kindling and long holds here and my perhaps, misinterpreted, impression is that they  are considered an almost irreversible mistake.   I know I could post on the benzo thread as well but it seems like this question applies to all psych meds.

 

OF note, I was never stable before tapering or during tapering.  I just get a little more stable usually meaning I sleep better which helps me handle all the other symptoms better.   As I age, nearing 65, medical conditions, some quite serious, are rearing their ugly heads way too early, considering I have had a super clean lifestyle, am not overweight at all, never really drank much (social, and not for many years now), never smoked, etc, always exercised...

 

Thank you for any thoughts on this.

Grace

I have only ever read that long holds to stablize are a good thing, at least on this forum. 

[savinggrace]

Hello.

 

Alto suggested I update my thread though things have not changed much. As I approach 65, all my chronic health conditions, many most likely brought on by these meds, have gotten much worse.  I have worked with a functional medicine doctor and also someone who studies phase 1 and phase 2 detoxification in liver and kidneys and it is obvious to almost everyone that both phases are impaired so I metabolize poorly and slowly, if at all.  I feel like all that lies ahead is just managing all the illness that accompanies being on these meds. My body has become super toxic and is sensitive to the tiniest little change in almost everything.   I tried to chip away at the valium this winter at a rate that is even  embarrasing to write (if successful, it would have amounted to 1 mg/year)  By the time I had cut .12 mg.(over 4 weeks)  I was soaking through bed sheets and suicidal and completely dysfunctional and as always, have decided that the risks of trying to move forward like that are greater than the risks of what I am doing.  I have studied, at length, the anti-cholinergic effect of my drugs.  It is the anti-cholinergic effects that are most threatening especially as one gets on in years.  So far, I do not believe that my memory or cognigition have been affected much, which is a God-send.  Instead the drugs are taking their toll on my kidneys, liver, GI, nervous system...well, everything else.  My brain seems unscathed cognitively.  I took a break after the valium disaster (first attempt at tapering it in 4-5 years) and went back to chipping away at the trileptal.  I have found that tapering the trileptal affects my two other drugs as it induces/inhibits them depending on which enzymes are needed for metabolizing.  I can deal most days with the trileptal w/d effects which are hyper-arousal, fragmented sleep, electric type shocks, night sweats, and severe fatigue (once in a while)  Though the withdrawal effects are really difficult, currently I am only cutting 2% which is 3 mg.  (I am down to 143mg.  from 300, 4 years ago).  Because the trileptal affects the blood levels of my two other drugs, I have to go very slowly with it as well, cutting a tiny bit, no more than every 3 months.  The trileptal, from my studying, has a lot of bad effects on the liver and is rated higher with its anti-cholinergic activity than the valium and remeron, so I figure any of this toxin I can get out the better.

 

I do feel afraid all the time.  I have a lot of really scary physical effects, and my doctors are clueless. I tough out so much pain and so many things most people would rush off to the ER for.  I can't take their drugs they would offer so why go.   If my  doctors had their way, I would updose on either remeron or valium or both.  My kidneys and liver are really struggling.  My blood work is getting worse.  My nutrition is horrendously deficient.  I have basically no B, C or D vitamins in me but everything that I take competes with the blood levels of my psych drugs, and getting them out has to be my priority.  I feel certain that I do not have anywhere near a normal lifespan ahead of me.  In fact, at any given time, if I need drugs for something else or surgery, I am going to have some tough decisions to make.  I put up with a ton of pain and live life very minimally but I am holding onto my kids and grandkids.  I even garden a couple times a week when I have the energy.  I also walk 45 minutes a day, in the sun if I can.

 

I am choosing to live life this way.  It may be abbreviated by my choice not to go faster and be bed-ridden, but I don't see a good ending to that.  There are not enough years left for me to get off the drugs and go through post-withdrawal syndrome and then live any kind of normal life.  So I choose to do what I can and manage each day the best I can.  It is a lonely and sad life often but I wouldn't trade this precious time to be part of my grandkids' lives for anything.  I wish I could be more hopeful.  Now I just hope to get through whatever each day brings me.  I am extremely grateful for little things and better days. (I don't ever have windows...maybe once in a long while a better night's sleep.)

 

Current drug doses...12.74 valium, 143 trileptal, 4 mg. remeron.

 

Grace

[Rozon1]

@savinggrace

 

Thanks for the update!

 

You mentioned you have digestive issues? Could you elaborate? What caused this? The anti depressants? I'm currently constipated going on 4 months with no sign of it letting up. Do you think I'll be like this for the rest of my life? Thanks

[Altostrata]

If you don't drink enough liquids and consume roughage, yes, you very well might be constipated for the rest of your life, @Rozon1

 

How is the water and fruit and vegetable consumption going?

[marie123]

Hi Grace. Thanks for stopping by on my post. It always helps to know that someone else gets it. These random symptoms from withdrawal can make you crazy. I know you mentioned you lowered your trileptal and that's a wonderful thing. I know you must go slow, I do too, and it can be a real pain in the butt. We are getting these poisons out of us at least.

 

Good for you having grandchildren that you can help during covid. You are a teacher and they are very special indeed. My family member is a teacher and is remote teaching special ed. Talk about challenges! I still remember my second grade teacher Mrs. Whitman, who was the kindest teacher ever. I would love some grandchildren, but I must wait for a few years. Gotta get the kids married!

 

I feel a bit better, but still feel crappy as usual in withdrawal mornings. Be well. Marie.