FAMILY MEMBER/PARTNERS SUPPORT THREAD

[[Jo...]]

I could use a little advice, and if not advice, then I guess a little encouragement from someone in a similar situation.

 

My wife’s had a really difficult past few weeks, has had some days of stability, but some really bad days where her anxiety/panic and insomnia really jumped, and so did her medicine levels from pretty stable at .5 ativan/day to 3 or even 4 ativan on really bad days. 

 

I just want this to be over, but since the backslide, my anxiety and stress level has also gone up.  I feel like we were so close, and I’m dealing with everything from anger at her (I know it’s not fair) for backsliding and initially hiding from me that she was backsliding, anger at myself for not doing a better job supporting her, exhaustion from providing a ton of support and working as hard as I can, and frustration when unfairly criticized for not doing more when she’s in pain.  She doesn’t always mean the criticism, knows that some of it’s not fair, and sometimes I think she forgets about it or just chalks it up to being in pain, but it’s really wearing on me and adding to my exhaustion/anxiety in general.

 

I haven’t really lost my temper or yelled yet, but I’ve given pushback that just makes things worse. Eg, I’m doing all of the cooking and most of the housework from laundry to cleaning to pet care, and I know she appreciates it, but during her episodes she’s just so critical that I haven’t done enough to help around the house, and sometimes I can’t help pushing back and telling her that I’m working hard and doing as much as I can and listing things I’m doing, even though she then feels attacked and criticized herself.  Sometimes I’m not even trying to argue; I’m just trying to assure her that she’s got support and isn’t alone, but I come off as defensive, which comes off as me being critical, which makes things worse.

 

Any advice for dealing with the frustration and anxiety of being criticized when I feel like I’m grinding and giving everything I can, whether it’s how to just let it flow past and move on, or how to talk constructively, how to be less defensive, or how to handle my own exhaustion/burnout?  I’m trying to stay strong and patient, but I’m so exhausted, and I’ve got so much anxiety about where we’re currently at in the process and hot to get things back on track.

[[Wh...]]

I am not feeling very sympathetic towards your wife so maybe I shouldn't comment.  I'll try to keep it civil and helpful although that may be difficult.  I fail to understand why you are doing all the work.  Does she have the dizzy boaty thing or is she unable to walk?  What symptoms prevent her from taking care of things?  I always did everything, no one catered to me so I don't understand what's going on at your house.  I feel like you are being mistreated.  I"d have been over the moon if someone had of cooked me a meal or vacuumed or brought groceries home.  She is damn lucky to have you in my opinion and needs to step up her appreciation department.  Maybe I"m missing something but this is my take on the situation.  I know lots of single women that had to do their tapers alone and also provide all their own self-care plus everything else even when they couldn't remember how to tie up their shoelaces or microwave a TV dinner they were so brain damaged.  I guess I don't understand when there is someone who actually takes care of you when you this, so this is not in the realm of my experience.  I apologize if I am out of line.  (You can't imagine the restraint I've used in my response.  )

 

My advice is to vent out the frustration (anger) here on BB.  Sheesh.  Another thing is that she needs to take charge of her taper, it's nonsense that she is messing around with dosages.  Is she serious about wanting to come off or was it your idea?  No wonder you're getting burned out John and feeling so awful.  I'm immensely frustrated just reading about what you're going thru.  It's not right.

 

P.S. I'll just add that because I had to cook meals etc., that is one of the reasons I survived, taking charge of that gave me purpose for my useless life while I was so very ill.

 

 

[[St...]]

Hi John firstly l will say this your wife must stop bouncing around on her dose.We all have stress but using the benzo to cope is not the way to deal with it.lf this continues she may as well stop tapering.

    Frustration is very common in withdrawal however you are not a punching bag and have to put yourself first at times or you will burn out.Encourage your wife to do things around the house.Help you prepare meals find ways to distract her mind.

    If she becomes overly verbally critical walk away and let everything calm down a bit.lt is never easy being a carer and you deserve a lot of credit for helping your wife however she needs to start helping herself as well.

[[Fa...]]

What is your wife doing to help her recovery? Is she going to therapy? Is she taking an AD or other medications to help with the anxiety? Is she learning coping mechanisms? Yoga?

 

As I said in your intro post your wife is very blessed to have you as a husband. My hubby told me yesterday to put in my big girl panties and get out if bed because we had work to do. This was at 7am when he knows I have insomnia and had gotten all of an hour sleep. We own a business so ok I get it, we have to keep plugging along but....still. no empathy at all.

My husband works every day very hard and is a good provider in that way, but when he gets home he showers, walks the dog and goes to his man cave for hours to play his guitar. He stays there until he is ready to eat his dinner that I prepare every night (salad, meat, potatoes...you get the picture) then he likes on the couch and takes control of the remote until he falls asleep and then comes to bed when he is ready.

Wash

Rinse

Repeat

He does not cook, do laundry, help clean, nothing. If I ask him to do anything at all I am nagging.

My husband does not believe that Ativan could even cause these problems. He had no desire to read this forum or know anything about what I am going through. He says it's menopause or something.

Have your wife read my story and hopefully she will realize how blessed she is and try a bit harder to stick with the plan at least and not go off the dose she is at my heart breaks for her because I know how hard this is and how painful, etc. And I was only a short term user and while I've had improvements I am now dealing with trying to get off the AD I was prescribed when I first got hit with acute. Again, husband says it's all in my head.

You are an amazing husband. Don't let this situation change that. Take care if you when you have to, get away and take a break or whatever...but stay strong. You have more strength than you realize. Hugs to both you and your wife.

[[de...]]

I could use a little advice, and if not advice, then I guess a little encouragement from someone in a similar situation.

 

My wife’s had a really difficult past few weeks, has had some days of stability, but some really bad days where her anxiety/panic and insomnia really jumped, and so did her medicine levels from pretty stable at .5 ativan/day to 3 or even 4 ativan on really bad days. 

 

I just want this to be over, but since the backslide, my anxiety and stress level has also gone up.  I feel like we were so close, and I’m dealing with everything from anger at her (I know it’s not fair) for backsliding and initially hiding from me that she was backsliding, anger at myself for not doing a better job supporting her, exhaustion from providing a ton of support and working as hard as I can, and frustration when unfairly criticized for not doing more when she’s in pain.  She doesn’t always mean the criticism, knows that some of it’s not fair, and sometimes I think she forgets about it or just chalks it up to being in pain, but it’s really wearing on me and adding to my exhaustion/anxiety in general.

 

I haven’t really lost my temper or yelled yet, but I’ve given pushback that just makes things worse. Eg, I’m doing all of the cooking and most of the housework from laundry to cleaning to pet care, and I know she appreciates it, but during her episodes she’s just so critical that I haven’t done enough to help around the house, and sometimes I can’t help pushing back and telling her that I’m working hard and doing as much as I can and listing things I’m doing, even though she then feels attacked and criticized herself.  Sometimes I’m not even trying to argue; I’m just trying to assure her that she’s got support and isn’t alone, but I come off as defensive, which comes off as me being critical, which makes things worse.

 

Any advice for dealing with the frustration and anxiety of being criticized when I feel like I’m grinding and giving everything I can, whether it’s how to just let it flow past and move on, or how to talk constructively, how to be less defensive, or how to handle my own exhaustion/burnout?  I’m trying to stay strong and patient, but I’m so exhausted, and I’ve got so much anxiety about where we’re currently at in the process and hot to get things back on track.

 

JohnATL,

 

Your wife having tapered for over a year already, I completely understand how exhausted, anxious, and stressed you must be, that you're giving it your all.  I commend you for how strong you've been and encourage you to do exactly this, come here to vent or get support yourself when needed.  I say that because I know how hard it is to take care of yourself or give yourself time off in the situation you're in.  There's no getting away from it, so if you can use this forum/thread to give yourself whatever relief you can get, then do so. 

 

As for your wife, her criticizing, anger, being emotional, unable to do housework ... I don't know the details of why she isn't able to but can imagine how things can get that bad.  My mother, who had always been the very opposite of lazy or incapable, cannot do much of anything around the house because of various phobias and sensitivities caused by benzo withdrawal.  She has instead become unreasonable, fastidious, irrational, emotionally volatile, and helpless.  I know this is because the drug has compromised her CNS, practically all her cognitive functions. 

 

It's hard being the caregiver (sometimes or often unappreciated), but I suspect it is my mother (and your wife) who is suffering more; not only has she lost control over her life and self, but she's daily agonized in trying to regain that, and scared, terrified, in the meantime.  I try to remember that over and over, tell myself that, when things get so bad that I want to yell and scream (which I have, as have my father as well, to our shame, but that's how it goes), so that I can remember what she must be dealing with, how hellish it must be.  And that seems to help me come to my senses when I need to, most of the time now. 

 

I know it isn't much, but those two things -- venting online, reminding yourself that your wife isn't herself right now -- are what I'd count as arsenal in this most vexing of battles. 

[[Ma...]]

I could use a little advice, and if not advice, then I guess a little encouragement from someone in a similar situation.

 

My wife’s had a really difficult past few weeks, has had some days of stability, but some really bad days where her anxiety/panic and insomnia really jumped, and so did her medicine levels from pretty stable at .5 ativan/day to 3 or even 4 ativan on really bad days. 

 

I just want this to be over, but since the backslide, my anxiety and stress level has also gone up.  I feel like we were so close, and I’m dealing with everything from anger at her (I know it’s not fair) for backsliding and initially hiding from me that she was backsliding, anger at myself for not doing a better job supporting her, exhaustion from providing a ton of support and working as hard as I can, and frustration when unfairly criticized for not doing more when she’s in pain.  She doesn’t always mean the criticism, knows that some of it’s not fair, and sometimes I think she forgets about it or just chalks it up to being in pain, but it’s really wearing on me and adding to my exhaustion/anxiety in general.

 

I haven’t really lost my temper or yelled yet, but I’ve given pushback that just makes things worse. Eg, I’m doing all of the cooking and most of the housework from laundry to cleaning to pet care, and I know she appreciates it, but during her episodes she’s just so critical that I haven’t done enough to help around the house, and sometimes I can’t help pushing back and telling her that I’m working hard and doing as much as I can and listing things I’m doing, even though she then feels attacked and criticized herself.  Sometimes I’m not even trying to argue; I’m just trying to assure her that she’s got support and isn’t alone, but I come off as defensive, which comes off as me being critical, which makes things worse.

 

Any advice for dealing with the frustration and anxiety of being criticized when I feel like I’m grinding and giving everything I can, whether it’s how to just let it flow past and move on, or how to talk constructively, how to be less defensive, or how to handle my own exhaustion/burnout?  I’m trying to stay strong and patient, but I’m so exhausted, and I’ve got so much anxiety about where we’re currently at in the process and hot to get things back on track.

 

JohnATL,

 

Your wife having tapered for over a year already, I completely understand how exhausted, anxious, and stressed you must be, that you're giving it your all.  I commend you for how strong you've been and encourage you to do exactly this, come here to vent or get support yourself when needed.  I say that because I know how hard it is to take care of yourself or give yourself time off in the situation you're in.  There's no getting away from it, so if you can use this forum/thread to give yourself whatever relief you can get, then do so. 

 

As for your wife, her criticizing, anger, being emotional, unable to do housework ... I don't know the details of why she isn't able to but can imagine how things can get that bad.  My mother, who had always been the very opposite of lazy or incapable, cannot do much of anything around the house because of various phobias and sensitivities caused by benzo withdrawal.  She has instead become unreasonable, fastidious, irrational, emotionally volatile, and helpless.  I know this is because the drug has compromised her CNS, practically all her cognitive functions. 

 

It's hard being the caregiver (sometimes or often unappreciated), but I suspect it is my mother (and your wife) who is suffering more; not only has she lost control over her life and self, but she's daily agonized in trying to regain that, and scared, terrified, in the meantime.  I try to remember that over and over, tell myself that, when things get so bad that I want to yell and scream (which I have, as have my father as well, to our shame, but that's how it goes), so that I can remember what she must be dealing with, how hellish it must be.  And that seems to help me come to my senses when I need to, most of the time now. 

 

I know it isn't much, but those two things -- venting online, reminding yourself that your wife isn't herself right now -- are what I'd count as arsenal in this most vexing of battles. 

I could use a little advice, and if not advice, then I guess a little encouragement from someone in a similar situation.

 

My wife’s had a really difficult past few weeks, has had some days of stability, but some really bad days where her anxiety/panic and insomnia really jumped, and so did her medicine levels from pretty stable at .5 ativan/day to 3 or even 4 ativan on really bad days. 

 

I just want this to be over, but since the backslide, my anxiety and stress level has also gone up.  I feel like we were so close, and I’m dealing with everything from anger at her (I know it’s not fair) for backsliding and initially hiding from me that she was backsliding, anger at myself for not doing a better job supporting her, exhaustion from providing a ton of support and working as hard as I can, and frustration when unfairly criticized for not doing more when she’s in pain.  She doesn’t always mean the criticism, knows that some of it’s not fair, and sometimes I think she forgets about it or just chalks it up to being in pain, but it’s really wearing on me and adding to my exhaustion/anxiety in general.

 

I haven’t really lost my temper or yelled yet, but I’ve given pushback that just makes things worse. Eg, I’m doing all of the cooking and most of the housework from laundry to cleaning to pet care, and I know she appreciates it, but during her episodes she’s just so critical that I haven’t done enough to help around the house, and sometimes I can’t help pushing back and telling her that I’m working hard and doing as much as I can and listing things I’m doing, even though she then feels attacked and criticized herself.  Sometimes I’m not even trying to argue; I’m just trying to assure her that she’s got support and isn’t alone, but I come off as defensive, which comes off as me being critical, which makes things worse.

 

Any advice for dealing with the frustration and anxiety of being criticized when I feel like I’m grinding and giving everything I can, whether it’s how to just let it flow past and move on, or how to talk constructively, how to be less defensive, or how to handle my own exhaustion/burnout?  I’m trying to stay strong and patient, but I’m so exhausted, and I’ve got so much anxiety about where we’re currently at in the process and hot to get things back on track.

 

JohnATL,

 

Your wife having tapered for over a year already, I completely understand how exhausted, anxious, and stressed you must be, that you're giving it your all.  I commend you for how strong you've been and encourage you to do exactly this, come here to vent or get support yourself when needed.  I say that because I know how hard it is to take care of yourself or give yourself time off in the situation you're in.  There's no getting away from it, so if you can use this forum/thread to give yourself whatever relief you can get, then do so. 

 

As for your wife, her criticizing, anger, being emotional, unable to do housework ... I don't know the details of why she isn't able to but can imagine how things can get that bad.  My mother, who had always been the very opposite of lazy or incapable, cannot do much of anything around the house because of various phobias and sensitivities caused by benzo withdrawal.  She has instead become unreasonable, fastidious, irrational, emotionally volatile, and helpless.  I know this is because the drug has compromised her CNS, practically all her cognitive functions. 

 

It's hard being the caregiver (sometimes or often unappreciated), but I suspect it is my mother (and your wife) who is suffering more; not only has she lost control over her life and self, but she's daily agonized in trying to regain that, and scared, terrified, in the meantime.  I try to remember that over and over, tell myself that, when things get so bad that I want to yell and scream (which I have, as have my father as well, to our shame, but that's how it goes), so that I can remember what she must be dealing with, how hellish it must be.  And that seems to help me come to my senses when I need to, most of the time now. 

 

I know it isn't much, but those two things -- venting online, reminding yourself that your wife isn't herself right now -- are what I'd count as arsenal in this most vexing of battles.

 

John, listen closely to Delta.  She truly in one of the most impressive buddies on BB.  Wise, caring and she learned and studied so hard when she first joined BB to help her mom.  Good luck and healthy wishes to both you and your wife

[[Mr...]]

Any advice for dealing with the frustration and anxiety of being criticized when I feel like I’m grinding and giving everything I can, whether it’s how to just let it flow past and move on, or how to talk constructively, how to be less defensive, or how to handle my own exhaustion/burnout?  I’m trying to stay strong and patient, but I’m so exhausted, and I’ve got so much anxiety about where we’re currently at in the process and hot to get things back on track.

Dear JohnATL,

I have read the several responses you have gotten to your plea for help.  It is pretty revealing to see the wide range of perceptions that are the result of the comparably wide varieties of experiences we all have had.  It is pretty disturbing to see that your wife is bouncing on her dosages to such a degree.  That will completely negate the efforts you have both put in to recovery.  I say "both" of  you, because even though you are doing the cooking, cleaning, shopping, pet care, etc., your wife is likely locked in a struggle just to survive.  My wife went into pretty extreme psychosis after a medically advised but unsupervised quick taper of 6 weeks from 2mg klonopin/day.  After months of terror, sleeplessness, weight loss, rage, pain, paranoia and confusion, she tried to affect the ultimate relief in an attempt to end it all.  It was not a cry for help but a dedicated, full blown effort to die.  God intervened and we found her in time to deal with the blood loss and shock that incurred.  Like you, I had assumed all of the household duties, chores, errands, child and pet care.  Like you, I bore the criticism and rejection that seemed to be all she had to offer.  At my weakest point, I lashed out in a torrent of hurt and anger.  She was devastated.  It was my most shameful moment, even to this day.  Reinstatement and a 19 month liquid titration taper gave us the control to successfully get to benzo free.  She continues to improve, but is not where she wants to be.  I am still hyper conscious and pretty sensitive to any criticisms she may offer, even though she is now able to do most of the meals and some of the housework.  I constantly remind myself of her dry sense of humor and her difficult upbringing, and keep an open perspective about some of her more pointed comments.  The meanness is gone, however we may never be again who we were before. But we did survive and things continue to improve.  One day, if things go as we all hope they will, you will hear your wife laugh out loud about something she has read or seen, and it will be the sweetest music you have ever heard.   

Mr. P

[[Ma...]]

Any advice for dealing with the frustration and anxiety of being criticized when I feel like I’m grinding and giving everything I can, whether it’s how to just let it flow past and move on, or how to talk constructively, how to be less defensive, or how to handle my own exhaustion/burnout?  I’m trying to stay strong and patient, but I’m so exhausted, and I’ve got so much anxiety about where we’re currently at in the process and hot to get things back on track.

Dear JohnATL,

I have read the several responses you have gotten to your plea for help.  It is pretty revealing to see the wide range of perceptions that are the result of the comparably wide varieties of experiences we all have had.  It is pretty disturbing to see that your wife is bouncing on her dosages to such a degree.  That will completely negate the efforts you have both put in to recovery.  I say "both" of  you, because even though you are doing the cooking, cleaning, shopping, pet care, etc., your wife is likely locked in a struggle just to survive.  My wife went into pretty extreme psychosis after a medically advised but unsupervised quick taper of 6 weeks from 2mg klonopin/day.  After months of terror, sleeplessness, weight loss, rage, pain, paranoia and confusion, she tried to affect the ultimate relief in an attempt to end it all.  It was not a cry for help but a dedicated, full blown effort to die.  God intervened and we found her in time to deal with the blood loss and shock that incurred.  Like you, I had assumed all of the household duties, chores, errands, child and pet care.  Like you, I bore the criticism and rejection that seemed to be all she had to offer.  At my weakest point, I lashed out in a torrent of hurt and anger.  She was devastated.  It was my most shameful moment, even to this day.  Reinstatement and a 19 month liquid titration taper gave us the control to successfully get to benzo free.  She continues to improve, but is not where she wants to be.  I am still hyper conscious and pretty sensitive to any criticisms she may offer, even though she is now able to do most of the meals and some of the housework.  I constantly remind myself of her dry sense of humor and her difficult upbringing, and keep an open perspective about some of her more pointed comments.  The meanness is gone, however we may never be again who we were before. But we did survive and things continue to improve.  One day, if things go as we all hope they will, you will hear your wife laugh out loud about something she has read or seen, and it will be the sweetest music you have ever heard.   

Mr. P

 

You are a pretty special man Mr. P :smitten:

[[pa...]]

Dear JohnATL....

 

I became a member in 2010 supporting my husband.  Mr. P and I go a long ways back.  Mr. P's words are the truth of what each one of us supporters with their spouses have gone through.  No one understands our side of that fence except "us".  Majority don't understand their side of the fence except "them".  Though, I was on both sides of the fence, so I understand both sides.  Though, when we went into this nightmare journey, not knowing the truth of my journey many years before, with the love and knowing who my husband always was, I was just like Mr. P... right by my husband's side.  We knew who are spouses and the love of our life was always, and why would we not do exactly what Mr. P shared like so many of us did.  Though, like Mr. P. my emotion broke with anger and lashing out at times, even one, ME, who had gone through the same journey many, many years prior not knowing the truth of it until with my husband and finding the information. 

 

What I can share with you, that I totally understand now..  Hindsight is so much better then foresight...  I would have "guided" with "gentleness" to have my husband become more proactive in helping with small things and building on that.  Small and gentle...  By doing this, this helps them have some semblance of balance.  I did just the opposite, and truly it backfired on me.

 

I supported many, many bbs and supporters over the years when I was very active.  And, there is something that I shared with the ones who had to "go it alone"...  They "had to stand up to the plate" and take care of things, and in some ways that was and aid for them, but it was also a big detriment.

 

John.. opinions are just that in this journey, no matter what side of the fence we are on.  It is one tough long all, walking the planks of hell.  I can share and tell you for a fact that healing does take place.  I did for sure, my husband has, though, I can say he being almost 76, age is most likely the factor, though he is very healthy, he is not who he was.. but he is so much older in age then starting out from it.  He is very, very healthy.  It's been a tough journey for us both, and it continued to be for me, as I stayed the course with him side by side, just wanting our lives back to where they were.  But, age was not in our favor.  So, I had to find an avenue to acceptance and I have.

 

You and your wife will survive this, like so many of us couples have.  Stay close on this thread, and to Mr. P... he is a true example of the trail and can provide so much good advise as he always has.  My best to you both.

 

Pattylu

 

P.S.  Mr. P... you have always been the very best.  Hugs to you from the Moon and back!

[[Mr...]]

Dear JohnATL....

 

I became a member in 2010 supporting my husband.  Mr. P and I go a long ways back.  Mr. P's words are the truth of what each one of us supporters with their spouses have gone through.  No one understands our side of that fence except "us".  Majority don't understand their side of the fence except "them".  Though, I was on both sides of the fence, so I understand both sides.  Though, when we went into this nightmare journey, not knowing the truth of my journey many years before, with the love and knowing who my husband always was, I was just like Mr. P... right by my husband's side.  We knew who are spouses and the love of our life was always, and why would we not do exactly what Mr. P shared like so many of us did.  Though, like Mr. P. my emotion broke with anger and lashing out at times, even one, ME, who had gone through the same journey many, many years prior not knowing the truth of it until with my husband and finding the information. 

 

What I can share with you, that I totally understand now..  Hindsight is so much better then foresight...  I would have "guided" with "gentleness" to have my husband become more proactive in helping with small things and building on that.  Small and gentle...  By doing this, this helps them have some semblance of balance.  I did just the opposite, and truly it backfired on me.

 

I supported many, many bbs and supporters over the years when I was very active.  And, there is something that I shared with the ones who had to "go it alone"...  They "had to stand up to the plate" and take care of things, and in some ways that was and aid for them, but it was also a big detriment.

 

John.. opinions are just that in this journey, no matter what side of the fence we are on.  It is one tough long all, walking the planks of hell.  I can share and tell you for a fact that healing does take place.  I did for sure, my husband has, though, I can say he being almost 76, age is most likely the factor, though he is very healthy, he is not who he was.. but he is so much older in age then starting out from it.  He is very, very healthy.  It's been a tough journey for us both, and it continued to be for me, as I stayed the course with him side by side, just wanting our lives back to where they were.  But, age was not in our favor.  So, I had to find an avenue to acceptance and I have.

 

You and your wife will survive this, like so many of us couples have.  Stay close on this thread, and to Mr. P... he is a true example of the trail and can provide so much good advise as he always has.  My best to you both.

 

Pattylu

 

P.S.  Mr. P... you have always been the very best.  Hugs to you from the Moon and back!

Pattylu, so good to hear from you.  Of course you may be all over these boards, but I only come here to see what the world has thrown at someone else.  Hope you are well and happy. 

 

Mr. P

[[bo...]]

Hi all...

 

Helping my mum through her ct/reinstated/taper now and i wish there was an active group like this again.

 

Nevertheless, it's been wonderful reading these past experiences, and I'm learning alot. but i still feel so ill prepared to handle the sx.

[[Mr...]]

Hi all...

 

Helping my mum through her ct/reinstated/taper now and i wish there was an active group like this again.

 

Nevertheless, it's been wonderful reading these past experiences, and I'm learning alot. but i still feel so ill prepared to handle the sx.

Boonana, this thread was a godsend to me during my wife's taper and recovery.  I come back here from time to time to see where the struggle is for people trying to figure out how to deal with and survive what can be a surreal experience.  Patience is going to be an essential element in your fight.  The biggest source of disinformation will, unfortunately be from the medical establishment.  People who have fought the fight, cried the tears, and survived are the ones you must trust the most.  Hopefully, more benzo aware doctors are coming forward, but support groups such as this one seem to be the path to the other side.  There are other benzo related groups and forums out there on the web, with omnipresent Facebook being a major player.  As you have seen, there is a lot of information in all these past posts, but it is a tedious search for the stuff that you need to see or hear.  One constant in all of this, I have found, is that trying to rush to a conclusion to the ordeal leads to more trauma.  Slow, steady progress is the way we found our way out.  Be specific in what you need to know.  Ask direct questions, even if they aren't the right ones, so folks can engage in the dialogue it will entail.  It does end.

Mr. P

[[bo...]]

Boonana, this thread was a godsend to me during my wife's taper and recovery.  I come back here from time to time to see where the struggle is for people trying to figure out how to deal with and survive what can be a surreal experience.  Patience is going to be an essential element in your fight.  The biggest source of disinformation will, unfortunately be from the medical establishment.  People who have fought the fight, cried the tears, and survived are the ones you must trust the most.  Hopefully, more benzo aware doctors are coming forward, but support groups such as this one seem to be the path to the other side.  There are other benzo related groups and forums out there on the web, with omnipresent Facebook being a major player.  As you have seen, there is a lot of information in all these past posts, but it is a tedious search for the stuff that you need to see or hear.  One constant in all of this, I have found, is that trying to rush to a conclusion to the ordeal leads to more trauma.  Slow, steady progress is the way we found our way out.  Be specific in what you need to know.  Ask direct questions, even if they aren't the right ones, so folks can engage in the dialogue it will entail.  It does end.

Mr. P

 

Hi Mr. Potato,

 

Thank you for still sticking around. I haven't had the time to fully go through the entire thread... so I'm not sure if you've already mentioned, but I hope Mrs P is doing alot better now.

I find myself gravitating alot to Mrubar's experience with helping her mum, the same sense of helplessness and the same hopefulness that comes along with each gradual improvement, and the frustration that comes with each setback. The part where she tried teaching her dad how to microtaper was definitely relatable . She doesn't seem to be active anymore, I hope everything's alright on her end.

 

I feel the weight on my shoulders, having to ramp up my knowledge of psych drugs in mere months to figure out what exactly went wrong with my mum. I don't feel fully prepared, or qualified to do so, yet the ones that should be qualified (pdocs) seem to be doing more harm than good, and I find myself in such a state of disbelief that I can't fully comprehend how this can go on for years under the guise of 'mental health'. I realise now, she's not only suffering from benzo withdrawal, but also antipsychotic withdrawal and anti-depressant withdrawal, compounded by the sudden switch of all her medications, twice, back in August and September.

 

Her SX right now mainly consists of dp/dr, GI issues (constipation), slight aggression/agitation, dysphagia, confusion, broken sleep/insomnia, severe cognitive impairment and short term memory loss, and paranoia. Her brain fog is so strong that most hours of the days her replies to me are mostly filled with 'Huh?' or 'Mmm' with the occasional 2-3 word answers. Alot of times I don't even know if she understands me, and I have to give really simple instructions for her to execute them. Forcing her to do things seem to backfire, and causes her to shut down in a state of terror/panic so we're learning not to do that... but it's a struggle if she doesn't know when to use the toilet herself.

 

Back when she was first cold-turkeyed in August, her cognitive was bad but at least she was still making sense and somewhat lucid when conversing with me. She's so far gone now, that it's hard to believe this happened within months. We only tapered 1mg from the reinstatement, but she's at 60%+ of her original dose. Is this all the cuts catching up to her now? These symptoms are really disturbing, and I keep doubting myself, thinking about what another pdoc mentioned - that there could be something more than benzo withdrawal going on, and that we should updose her effexor. I know in my heart it's all withdrawal, that I need to do a long-hold for her right now to stabilize her, but there's a tiny voice in my head that's frightened that I'm wrong.

 

I miss her terribly; she was always the one I could talk to or count on, I never thought she would end up like this.

 

I've been reading alot to learn as much as I can to help her, and I know from reading other threads that these sx seem to be quite typical of psychiatric drug withdrawals, but I guess I need to hear someone who's been through this from a caretaker perspective... is benzo withdrawal really capable of producing such sxs?

 

Also, I've been holding her at 7mg for almost 2.5 months... with her sx that bad, should I even keep on with her taper, as the pdocs would have me do? Or do I hold her alot longer in the hopes that she'd stabilize... but what is that exactly? when do I know she's stabilized and ready to taper again?

 

I've been on survivingantidepressant lately, and over there they suggest that one should taper the activating drugs first, which means I should be getting her off effexor first, before coming back to the valium. This makes sense to me, as I'm really not comfortable with her staying on the effexor throughout her entire benzo taper, and holding her on her valium while we taper the effexor will give her GABA receptors more time to stabilize, but it seems to contradict what alot of people here on BB are doing.

 

'Patience is going to be an essential element in your fight.  The biggest source of disinformation will, unfortunately be from the medical establishment.  People who have fought the fight, cried the tears, and survived are the ones you must trust the most.'

 

Thank you for this. I've shed more tears than I thought I was capable of, and I'm learning the truth in what you've said.

I'll look at facebook as well, it's been awhile since I've been on that portal.

 

Thank you again, and I'm so happy you're still around, and that I have the opportunity to converse with you through this forum. Your words of advice to others as well as your own experienced in helping Mrs P that you've shared in the thread has been a source of great comfort over the past few months, and I'm really grateful that you've shared and helped so much.

[[Mr...]]

Boonana, this thread was a godsend to me during my wife's taper and recovery.  I come back here from time to time to see where the struggle is for people trying to figure out how to deal with and survive what can be a surreal experience.  Patience is going to be an essential element in your fight.  The biggest source of disinformation will, unfortunately be from the medical establishment.  People who have fought the fight, cried the tears, and survived are the ones you must trust the most.  Hopefully, more benzo aware doctors are coming forward, but support groups such as this one seem to be the path to the other side.  There are other benzo related groups and forums out there on the web, with omnipresent Facebook being a major player.  As you have seen, there is a lot of information in all these past posts, but it is a tedious search for the stuff that you need to see or hear.  One constant in all of this, I have found, is that trying to rush to a conclusion to the ordeal leads to more trauma.  Slow, steady progress is the way we found our way out.  Be specific in what you need to know.  Ask direct questions, even if they aren't the right ones, so folks can engage in the dialogue it will entail.  It does end.

Mr. P

 

Hi Mr. Potato,

 

Thank you for still sticking around. I haven't had the time to fully go through the entire thread... so I'm not sure if you've already mentioned, but I hope Mrs P is doing alot better now.

I find myself gravitating alot to Mrubar's experience with helping her mum, the same sense of helplessness and the same hopefulness that comes along with each gradual improvement, and the frustration that comes with each setback. The part where she tried teaching her dad how to microtaper was definitely relatable . She doesn't seem to be active anymore, I hope everything's alright on her end.

 

I feel the weight on my shoulders, having to ramp up my knowledge of psych drugs in mere months to figure out what exactly went wrong with my mum. I don't feel fully prepared, or qualified to do so, yet the ones that should be qualified (pdocs) seem to be doing more harm than good, and I find myself in such a state of disbelief that I can't fully comprehend how this can go on for years under the guise of 'mental health'. I realise now, she's not only suffering from benzo withdrawal, but also antipsychotic withdrawal and anti-depressant withdrawal, compounded by the sudden switch of all her medications, twice, back in August and September.

 

Her SX right now mainly consists of dp/dr, GI issues (constipation), slight aggression/agitation, dysphagia, confusion, broken sleep/insomnia, severe cognitive impairment and short term memory loss, and paranoia. Her brain fog is so strong that most hours of the days her replies to me are mostly filled with 'Huh?' or 'Mmm' with the occasional 2-3 word answers. Alot of times I don't even know if she understands me, and I have to give really simple instructions for her to execute them. Forcing her to do things seem to backfire, and causes her to shut down in a state of terror/panic so we're learning not to do that... but it's a struggle if she doesn't know when to use the toilet herself.

 

Back when she was first cold-turkeyed in August, her cognitive was bad but at least she was still making sense and somewhat lucid when conversing with me. She's so far gone now, that it's hard to believe this happened within months. We only tapered 1mg from the reinstatement, but she's at 60%+ of her original dose. Is this all the cuts catching up to her now? These symptoms are really disturbing, and I keep doubting myself, thinking about what another pdoc mentioned - that there could be something more than benzo withdrawal going on, and that we should updose her effexor. I know in my heart it's all withdrawal, that I need to do a long-hold for her right now to stabilize her, but there's a tiny voice in my head that's frightened that I'm wrong.

 

I miss her terribly; she was always the one I could talk to or count on, I never thought she would end up like this.

 

I've been reading alot to learn as much as I can to help her, and I know from reading other threads that these sx seem to be quite typical of psychiatric drug withdrawals, but I guess I need to hear someone who's been through this from a caretaker perspective... is benzo withdrawal really capable of producing such sxs?

 

Also, I've been holding her at 7mg for almost 2.5 months... with her sx that bad, should I even keep on with her taper, as the pdocs would have me do? Or do I hold her alot longer in the hopes that she'd stabilize... but what is that exactly? when do I know she's stabilized and ready to taper again?

 

I've been on survivingantidepressant lately, and over there they suggest that one should taper the activating drugs first, which means I should be getting her off effexor first, before coming back to the valium. This makes sense to me, as I'm really not comfortable with her staying on the effexor throughout her entire benzo taper, and holding her on her valium while we taper the effexor will give her GABA receptors more time to stabilize, but it seems to contradict what alot of people here on BB are doing.

 

'Patience is going to be an essential element in your fight.  The biggest source of disinformation will, unfortunately be from the medical establishment.  People who have fought the fight, cried the tears, and survived are the ones you must trust the most.'

 

Thank you for this. I've shed more tears than I thought I was capable of, and I'm learning the truth in what you've said.

I'll look at facebook as well, it's been awhile since I've been on that portal.

 

Thank you again, and I'm so happy you're still around, and that I have the opportunity to converse with you through this forum. Your words of advice to others as well as your own experienced in helping Mrs P that you've shared in the thread has been a source of great comfort over the past few months, and I'm really grateful that you've shared and helped so much.

Sorry for the late response, boonana.  Good to hear from you.  I hope things are progressing, ever so slowly, but progressing.  One of the greatest lessons learned in this experience is the essential function time plays in recovery.  There are depths of patience in the human psyche that we don't often plumb, but this journey will help you see what you're made of.  Our shared experience isn't uncommon, and literally thousands of people are in this fight.  When you mentioned that you wondered if there could be some other condition or factor that could contribute, it became evident in my wife's case that she was also suffering from breast implant disease.  This may not be relevant for your mom, but it was revealed to be a major player in a lot of the physical symptoms Mrs. P suffered from.  Since explantation, her recovery has accelerated.  Once again, Facebook can provide a basis of contacts and groups that are very helpful.  Be advised, that should this be a factor for your wife, you will find the medical community very evasive about admitting to any knowledge concerning it.  Interestingly, the surgeon that did my wife's implants now boasts of "explantation services" to remove the implants.  Again, this may not apply, but if it does, don't ignore it. 

I'm hoping the new year will bring you and  your wife through many breakthroughs and milestones to healing.  Keep the faith.

Mr.P 

[[Ma...]]

Thanks, Pianogirl.  We checked it out.  The link sent me to really old stuff, from 2013.  I will keep looking. 

[[Su...]]

I really need this forum to talk to ppl going through what I am experiencing. My son took his last dose of clonazepam October 2018 and is still experiencing physical and mental symptoms, he asks me all the time if he is going crazy and I tell him he is not. He has alot of paranoia and fear of many things and to make matters worse  his father doesn't understand this situation and thinks he shouldn't be having symptoms so far out. He just doesn't understand my sons inability to do simple tasks. My son can do them but finds them hard to do, he never had this problem before all the drugs he took( clonazepam and many other doctor prescribed antidepressants and anti anxiety meds). My sons depression has become worse because he feels he should be a lot better by now. With his father not understanding what benzos do to your brain this situation is very hard to deal with: it's my son and I against my husband and it's tearing our family apart...

[[pi...]]

I really need this forum to talk to ppl going through what I am experiencing. My son took his last dose of clonazepam October 2018 and is still experiencing physical and mental symptoms, he asks me all the time if he is going crazy and I tell him he is not. He has alot of paranoia and fear of many things and to make matters worse  his father doesn't understand this situation and thinks he shouldn't be having symptoms so far out. He just doesn't understand my sons inability to do simple tasks. My son can do them but finds them hard to do, he never had this problem before all the drugs he took( clonazepam and many other doctor prescribed antidepressants and anti anxiety meds). My sons depression has become worse because he feels he should be a lot better by now. With his father not understanding what benzos do to your brain this situation is very hard to deal with: it's my son and I against my husband and it's tearing our family apart...

 

To be very honest, only those who have gone through withdrawal can understand the depth of benzo withdrawal.  Your son is very lucky to have you in his corner.  It's possible his father may never really understand the process but perhaps he would be willing to read a paper written by a former member. It explains in easy to understand language, rather then scientific terms, what is going on in the brain during withdrawal. I'll give you a link to this thread.

 

Many of us felt we should have healed earlier, this is pretty common.  The best thing for me was to stay distracted.  I had a rotating group of distractions from reading to puzzles to watching movies that I used to help me from ruminating about my recovery.  Avoiding looking at the calendar helps as well.  It would also be helpful if your son read Success Stories here on the forum, they were my 'go to' when times were rough.

 

Your son's central nervous system is still trying to recover, to find balance again. Patience and acceptance is very important, it was hard for me to practice this but after a time I became an expert at it. 

 

 

What's happening inside your brain

 

Success Stories

 

PG 

[[Gi...]]

First, let me say how grateful I am for the opportunity to have even one person hear this story.  Please pour yourself a tall glass of unsweet, decaf iced tea and indulge me while I share our story. I am a full time caregiver and the oldest child of my precious, gentle, kindhearted, trusting, Ativan-addicted, and very vulnerable mother who will turn 79 this month.  For ease of reading, I've broken the story down into three categories:  “Background”, “The Last 13 Months”, and “Current”. 

 

BACKGROUND:

In 2012, Mom had an emergency appendectomy.  My sister and brother traveled to be at her side.  During her recovery, my siblings noted that mom “didn't seem to be her normal self”, although she was physically healing fine.  For as long as I can remember, we have all lived several hours away, my brother living out of state, but talk to mom on a regular basis.  None of us had actually seen her in a month or so prior to the surgery.  Because of her unusual behavior, after recovery, my sister convinced mom to move closer to her in a rent house just a few houses down.  Mom agreed.  Over the next 12 months my sister reported that mom was overly anxious, couldn't sit still, forgetful, and somewhat confused.  But to the rest of us, mom seemed fine over the phone. 

 

After a doctor's visit in 2013, mom was selected to participate in some sort of “new, hi-tech imaging” and was subsequently diagnosed with Alzheimer's.  Our hearts sank!  Immediately, the doctor prescribed Alzheimer's meds, which resulted in a psychotic episode.  He tried a second one and got the same results.  Having already secured her Medical Power Of Atty, all three of us children made the decision NOT to pursue any type of Alzheimer's treatment, period. 

 

For 30 years, mom's walked six miles a day.  In 2014, she became sporadically emotional and scared.  She wanted to move closer to me, although I traveled 100% of the time.  Like I say, walking is/was her thing.  When talking on the phone, I would hear the busy traffic whizzing by as she walked.  Also, my sister was busy with her new career as a registered dietitian as well as staying involved with her teenage son who was starting to divert his attention away from school and a promising future.  I figured mom was feeling a bit lost in the mix.  So, I agreed that my small town 5 hours north would definitely be safer.  Plus, I had a great community filled with good neighbors that could keep an eye on her while I was on the road.  By September, we had her packed up and moved north.  Our Mayberry-ish life was going great!  Mom had made numerous friends and found a church within walking distance.  She willingly gave up driving and had a home health care aid a few hours each day to help with housework, meal preparation, shopping and be her walking buddy. 

 

By 2015, my sister, brother-in-law and their recently graduated son had found jobs close by and also made the move to our county.  Mom's care would now become a true team effort!  As expected with an Alzheimer's diagnosis, Mom's cognitive abilities started to noticeably decline.  Instead of using my own physician, I had found mom a physician just a few blocks from the house that accepted walk-in appointments. 

 

Due to her limitations increasing, by the end of 2016, I quit my on-the-road job, accepted a local position, locked up my house and moved in with Mom. 

 

May of 2017, suddenly, Mom's anxiety went through the roof.  I suspected it was a UTI, and lab results confirmed such.  However, her doctor didn't call in antibiotics by day's end as promised.  Each day that week the clinic receptionist assured me that the doctor would call in antibiotics, to no avail.  After the fourth day, on Friday, I found another doctor to call in a prescription.  The next morning, mom awoke feeling better.  However, that afternoon she became delusional and aggressive.  My sweet, mild manner mother believed that I had decapitated her cat even though the cat was safely sitting next to her.  She jumped up, started yelling, and beating on me.  I remained calm in spite of my overwhelming concern for her behavior.  With my phone in hand, I positioned myself facing a corner of the room so that she could only punch my back.  She's much smaller than me so her punches were not really causing harm.  I called 911 and requested an ambulance, but was refused.  They will not take someone against their will even if I held medical power of attorney.  The dispatcher offered to send an officer, only if I agreed to press charges.  “My mother needs medical attention, not be arrested”, I replied.  I then called the Alzheimer's hotline.  The representative could hear mom beating on me and became more focused on her disbelief that I was so calm rather than offering me advice.  I explained, “someone has to be calm, and it's obviously not going to be her...do you have any suggestions on how to calm her down?”  The representative, suggested I call the authorities.  Well, that was a waste of time.  I called a few neighbors to let them know what was going on.  One offered up a Xanax.  My sister, who had been an hour away in the city, headed our way.  More than an hour after this outburst started, my sister arrived.  She had already stopped to pick up the Xanax as well as an ice cream cone with sprinkles....mom's favorite.  She added the broken Xanax to the cone, as if it were one of the many sprinkles.  I fled to a neighbor's for respite and to make phone calls.  Mom sat quietly on the sofa and devoured her favorite treat.  She also willingly took her next dose of antibiotics before going down for a nap. 

 

The next day was Mother's Day 2017.  Mom awoke happy, albeit very anxious, with no knowledge of the previous day's events.  Although, she did complain that her hands were sore and severely bruised.  By 8:00 am, my sister and brother-in-law arrived.  We had promised Mom breakfast at her favorite restaurant in the city to celebrate Mother's Day.  Instead, we arrived at the hospital's geriatric behavioral unit.  Mom willingly walked in on her own accord.  In the exam room she started to become agitated.  The nurse on duty gave her a pill that changed everything!  My sister and I were AMAZED by the immediate transformation.  I asked, “What did you give her?” The male nurse replied, “Ativan”.  We'd never heard of it and asked for the spelling.  My sister grabbed a piece of paper and promptly made a note of this magic pill.  Only later did we realize that to be one of the biggest regret of our lives! Mom spent the next 14 days in the behavioral unit, under the supervision of an armed guard, psychiatrists, being fed benzos and the antibiotics that I had supplied.  Of course, she improved each day as the antibiotics fought the urinary tract infection. 

 

After 14 days, we returned home with a new Rx in hand, 1 mg Ativan daily (.5mg morning/night).  My first order of business was to welcome mom home.  And, the second order, was to accuse her doctor of neglect for not immediately calling in the antibiotics after receiving lab results.  Third order of business was to set her an appt with my physician 14 miles away.

 

My doctor listened to the details of our recent ordeal and ordered lab tests.  For the next three visits, my doctor would ask me each and every time, “Are you sure she has Alzheimer's?”  And, each time, my response would be, “I ask myself that same question, every day.”  Because she didn't fit the typical Alzheimer's profile, he a neurology appt.  The neurologist determined that she did not have Alzheimer's.  But, he felt she did have Fronto Temporal Dementia (FTD).  FTD patients don't necessarily lose memory but do suffer from short term memory loss, and have a much longer life expectancy.  We've all accepted that diagnosis.  My doctor also encouraged me to take mom off of the Ativan.  However, coming off my recent beating, I was hesitant.  The thought of her not having the “happy pill” was fairly alarming to me at the time.  He agreed that we could wait and address it again in the near future.  But that never happened. 

 

Six months after being discharged from the hospital, mom was sitting on the sofa while we talked and her entire body jumped/jerked for a mere nano-second.  The next month, I noticed the same event and reported it to the doctor.  He suggested that it was probably myoclonic muscle jerks.  He then changed the Ativan prescription to read “for myoclonic jerks” instead of “for anxiety”.  The dosage was not changed.  These “jerks” happened once a month for several months, then once a week, and eventually every morning upon waking.  I noted and reported to the doctor that the “jerks” never occurred after taking her morning dose of Ativan.  One day the jerk was so forceful that her hot coffee spilled and seriously burned her thigh.  So, we switched to a lidded coffee cup.  Oh, in hindsight, my ignorance is absolutely astonishing!

 

 

THE LAST 13 MONTHS:

 

June 14, 2019, Mom and I went to the movie theater and watched Aladdin from the front row, our typical seats along with our other blue-haired friends.  Something happened towards the end of the movie and I was unable to walk out without mom's physical assistance.  She led us to the car and directed me on how to drive home, just six blocks away.  Turns out the movie had triggered vertigo for the first time in my life. Suddenly, Mom became my caregiver for the next several weeks. 

 

Five weeks later, July 23, 2019, Mom awoke early as usual, tinkled, and moved to her recliner in the livingroom. I handed her the first hearing aid, which she inserted and then reached out for the second one. Before I could put it in her hand, all hell broke loose.  I've never seen anything like it.  I was certain she was dying the most cruel, violent, unGodly death possible.  I'll omit the details.  The paramedics arrived as she was regaining consciousness and rushed her to the ER 14 miles away.  I hadn't driven yet since my bout of vertigo and really had no business doing so, but the ambulance wouldn't allow me to ride with her.  So, with blurred vision, I followed close behind.  When I arrived at the ER, there was Mom sitting up, laughing, and hugging on everyone.  I was amazed!  They explained that she had a grand mal seizure and was given 1,000mg of Keppra, then sent home with a Rx of 500mg Keppra daily.

 

The next morning, Mom awoke chipper as usual and even cognitively sharper than she had been recently.  She was looking forward to the helper arriving so they could take her six mile walk at the park.  They started down the path and Mom suddenly had trouble catching her breath. Primary care physician called neurologist to report that the Keppra caused adverse side effects.  Neuro said it was something else and not the medicine.  Both doctors actually argued back and forth.  PCP ordered additional testing, to no avail.  For the next month, Mom was given five different seizure meds.  All resulting in either breathing issues or skin eruptions from toxicity.  As each anticonvulsant was abruptly stopped a grand mal followed.  PCP stopped all seizure meds and increased Ativan to every 6 hours, then encouraged me to find a new neurologist.  A few weeks later, PCP was suddenly forced into retirement from complications of a heart attack he had suffered earlier in the summer.  Knowing that left Mom with no doctor and no neurologist, he gave me his cell phone number to call if I needed him.  The first appointment with the new neurologist wasn't for another six weeks – mid October.  In the meantime, we continued to see a Nurse Practitioner from the clinic.  The NP at first refused to refill the Ativan Rx and took it upon himself to contact the previous Neuro who said that he didn't believe Mom was even having seizures.  WHAT?  At this point, with no seizure meds and an increase of Ativan, she was having ongoing, never ending seizures that lasted for days at a time.  Eventually, only by the grace of God, she made it through and the seizures slowed in length and intensity. 

 

October rolled around and in the very first visit to new Neuro, I mentioned my concerns that the Ativan may be causing these seizures.  New Neurologist admitted Mom into hospital for four day stay and Video-EEG.  All meds were abruptly stopped to induce a seizure.  Within 24 hours she had a grand mal.  Neuro diagnosed generalized epilepsy and said Mom was only the second case she's ever known of to develop epilepsy so late in life.  Neuro prescribed Depakote and decreased Ativan back to 1mg daily (.5mg day/night). 

 

November and December were seizure-free...praise God!  However, in January 2020, Mom started having trouble swallowing and became virtually non-verbal.  Her vocabulary consisted of “yes”, “no”, and “maybe”.  January through March were also seizure-free.  But, as each month passed, she seemed to become more sedated, eventually sleeping 18 to 20 hours a day.  Also, during this time frame, we'd been shopping for a new PCP.  Each one would tell me that my expectations were too high, “she's almost 80 and has dementia, this is expected”.  Or, that I was in denial, despite my claims that Mom was overmedicated.  I finally called the retired PCP on his personal cell phone.  He assured me that I wasn't in denial and that it was the medication and keep looking for a doctor that would listen.  I think I've finally found one.  But, it's hard to tell since there's limited in-person visits due to Covid19 coming on the scene. 

 

Because of Mom's swallowing issues, the Neuro switched the Depakote to liquid, Valporic Acid 10 ml daily (5ml morning and night).  That was April 1st.  On April 6th, Mom had her first grand mal seizure since October 28th.  April 13th, she had another and the Valporic Acid was increased to 15 ml (5 ml morning and 10 ml at night).  Now, she seemed even more sedated.  When I complained about the sedation to the Neuro, I was told “Your mom is terminally ill and we just need to keep her comfortable.”  I replied, “She sure doesn't act terminally ill every single evening – that is up until an hour after taking meds. When she's awake, she dancing to her favorite music, eating like a truck driver, and she's never been incontinent!” I insisted that we decrease something, either the VPA or the Ativan because I had read that in rare cases there's a drug interaction between the two drugs: “VPA reduces the excretion of Lorazepam, as a result of these interactions, even if rarely, serious adverse effects such as coma may develop”.  Neuro instructed me to choose, “decrease one or the other but not both”.  I chose to decrease Ativan since my gut told me that it was the culprit all along.  Then, I found Dr Ashton's Manual. 

 

One evening, while giving my family a telephone update, I brought up the discovery of Dr. Ashton's Manual.  My uncle (Mom's brother) mentions for the first time ever, “You know your mom has taken Valium since the 1970's when your parents divorced?”  WHAT?  I never knew that.  My siblings never knew that.  My uncle assures us all that she has kept a prescription in her purse since 1970s.  That she took the lowest milligram and would half the pills, taking a half on an as needed basis.  You know, we do all remember a pill bottle in her purse.  But, that's all we remember.  Of course, that information got our heads to spinning.  Mom didn't move to my sister's with any Valium prescription.  She didn't move to my community with one.  Was it because the Valium was kept in her purse and not with her other meds (thyroid, blood pressure, anti depressant) that we never noticed it or refilled it?  Was it that after her 2012 surgery, she was woozy, failed to take the Valium, and suddenly stopping it caused her behavior to noticeably change? Could abruptly stopping Valium after 45 years and not dementia be the problem? – (although, we all agree that she does have dementia).  Or was it later on down the road when she kept losing or misplacing her purse that the prescription got lost and was suddenly stopped?  Maybe Mom stopped taking Valium prior to 2012 surgery without my uncle's knowledge.  At this point, it seems we'll never know the answers to these questions.

 

CURRENT:

May 10, 2020 (Mother's Day – three years to the day that Mom was given her first dose of Ativan), I started tapering.  Although I had read that it's best to taper 10% or less every one-two weeks, I chose to taper 12.5% because that was 1/8 of the pill and there was a since of urgency here.  AGAIN, MY IGNORANCE never ceases to amaze me!  So, that's what I did.  And, the improvements were nothing short of unbelievable.  Within five days, mom was awake, alert, using more words.  Her attention span had improved 100 fold.  She became engaged and could follow commands.  Within two weeks, she was making full sentences and practically dressing herself, buttons and all.  Three weeks in, she was reading store signs and cracking jokes.  Don't get me wrong, it's not as if you could carry on a full blown conversation with her, but at the very minimum she could definitely make her likes and dislikes known. 

 

In June, 2020, I had a video-visit with Neuro and described the huge improvements, along with the only notable withdrawal symptoms of insomnia, muscle cramping, lots of gas and some diarrhea.  I explained that although I was a tad bit more aggressive than the recommendations found at benzo.org.uk, I was reducing 1/8 of a pill (12.5%) every two weeks, alternating reductions between morning and evening doses and asked for her input.  She encouraged me to continue with tapering, just as I had been doing and then cut me off with the usual, patronizing “you're doing a great job!” garbage.  She offered no guidelines of her own on how to do it.  Every time I ask for guidance from any doctor, I'm told, “You know your mother better than anyone.  You'll be fine.”  WHAT?  I always verbally reply, “I KNOW NOTHING ABOUT MEDICINE.  I'm in the restaurant development business.  I'm ignorant and clueless.  Please believe me for the sake of my precious mother.”  It seems to fall on deaf ears.  Yet, mom continued to improve despite my ignorance and the ignorance of the doctors....I can only give glory to God. 

 

June 27, 2020, a grand mal seizure!  No warning.  No myoclonic jerks before hand, nothing!  Neuro instructed me to stop tapering for now.  “It was probably triggered by the insomnia since sleep deprevation can trigger seizures in the healthiest of patients.”  Mom was down 50% of the original dose, at this point.  She's down to .5mg daily (a half of a pill - .25mg morning/night). 

 

A few weeks go by without additional tapering and Mom seems to be falling back into her sedated mode.  She's sleeping more, not nearly as alert, gait is off, etc.  With permission from the Neuro, I started tapering again on July 13, 2020.  But this time, I'm doing less.  Using an Xacto knife, I'm going to taper 1/16 of a pill (in my stupid mind, it's a 6% taper), and stretch it out to every three weeks. 

 

Well, you guessed it, July 23, 2020, another grand mal!!!!  Contacted Neuro who increased her VPA to 20 ml (10 ml morning and night).  Now all the progress we had made over the summer getting Mom out of a stupor is for not.  I asked the Neuro if it were even remotely possible that an Ativan tolerance caused the very first seizure July 23, 2019.  She replied, “Yes, it's possible.”  I replied, “If that's true, then it must also be possible that she doesn't even have epilepsy?”  The Neuro responded, “No, that's not possible.  Listen carefully because it's going to sound like I'm mincing my words.  The very first grand mal seizure might've been caused by a Lorazepam tolerance, which might've been what triggered the epilepsy to surface...a perfect storm so to speak.”  I'm still not buying that Mom has epilepsy...but what do I know. 

 

With much prayer and sleepless nights, I discovered BenzoBuddies last week.  It was only then that I discovered that tapering means 10% off of the current dose and not off the original dose.  OH MY GOSH, MY IGNORANCE HAS CAUSED THE LAST TWO SEIZURES!  And, I also now know that my Xacto knife shavings are inconsistent and possibly causing more undue withdrawal symptoms. So, I ordered a pill crusher and millimeter scale that should arrive by Monday. 

 

Also last week the Neuro's Nurse Practitioner sent me an internal written message that read:  “Her depakote level was normal, but there is room to increase her dose. Lets try increasing to 10 ml twice a day. After 1 week, reduce Lorazepam to 0.25 mg daily x 1 week, then every other day for one week, then stop”.  WHAT?  She actually wants me to wean her off lorazepam within two weeks.  Obviously, that's not happening.  The Neuro and I had already agreed to a slow taper, so that's what I'm sticking with.  And, I'm hoping someone here can support me so that I don't make a mess of things and potentially harm my mother any more than she's already suffered.

 

I'm giving glory to God for each day I have with my mom and for Him opening doors that need to be opened and closing others.  I'm giving glory to God for finding BB and for anyone who's still reading this story, who can relate to it from personal experience, and who is willing to be a voice for my precious voiceless mom who deserves the best quality of life there is to offer. 

 

Sincerely,

Giving Glory

 

PS - I haven't really done any sort of internet work since 2008.  So, this is my first time using such a format.  If there's something I need to do or change, please let me know. 

[[Ma...]]

GG, this is a great thread for you to go back to the beginning and read it all.  Some of these people will still be on here and will be more than happy to support you and have conversations.  They have all been through similar situations.    Take your time, ask any question , I will be here.  I haven't gone through what you have, but if nothing else, I can usually point you where you need to go to get the information you need from bb.  Mary 🙋🏼🙋🏼.    🙏🙏🙏😘

[[Ma...]]

Bump

[[LY...]]

I just wanted to vent a little.  My girlfriend basically CT'd off Klonopin at the very end of May.  It was .5 once daily for sleep and we had no idea that it could "injure" her.  Since that time, she won't see me or talk to me on the phone.  She will only communicate with me via text.  It has been a little over 3 months and still the same.  She is able to care for her boys, gets them to school, takes them to swim practice, goes to the grocery store etc.  Our relationship was amazing at the end of May.  Now, it's text messages that I initiate 95% of the time unless she is worried about something like when her hair was falling out.  When I look back at our text messages then and now, it's a 180-degree turn.  She is able to talk to her mother, who is in Brazil, on the phone and texts her.  Her mom has no idea what's going on.  I have a good relationship with her and act as if everything is fine since telling her wouldn't do anything to help the situation.  My girlfriend has always isolated when she has had heavy situations to deal with, but I was always the one who would coax her out of her shell and at least make her laugh a little.  Now, I'm the one being shut out.  It's so confusing to me.  I am the only person who knows what she's dealing with, so I think that's the reason why.  She told me via text on June 23rd that she didn't like to talk about what's going on because it makes the symptoms worse and every time I reach out, it reminds her that she's not well. Her quote was "even the thought of having to explain is overwhelming".  We obviously don't live together and I'm not going to just show up at her door without being invited as I think that would only push her further away.  Has anyone experienced anything like this?  We are literally best friends.  This si so confusing!!!

[[ra...]]

Hello.

 

37m here - my Mother is 70 and was on Benzos for over 30 years. It took her over 5 years to get off it and did not see much relief from protracted withdrawals. Things went downhill early 2022 when she went on a different SSRI and had to go to a Psych Ward.

 

Doctors had to put her back on Benzos for 2 months and she is now trying to taper again and it is Hell times a million. She is beyond her lowest point and I am struggling to find ways to best help her.

 

She does not have the stamina for this at 70 - she sleeps 1 hour every night and spends all day pacing (her watch clocks in at over 20km every single day). Even with all the walking, he body is so tired but her mind is just racing and she feels she is losing her mind.

 

Today my mother has to reinstate at .5mg. She just has lost the will to continue to taper. It could take several months to get off Klonopin and even longer for the withdrawals to end. I feel gutted - more so for her because staying on it does not guarantee anything. She feels so defeated.

 

I want her to continue with the taper but it’s so easy for me to say that to her. And I don’t know how much worse this second taper will be at 70 years old.

 

She goes to see her psych now and she is so terrified.

 

Like so many of you I’m so lost. I wish I knew more about benzos so I could have helped her out better the first time she tapered off - even that was a tremendous thing for her to deal with in her 60s. She looks so much frail now and to hear the pain in her voice - it just breaks me.

[[Be...]]

That is a very sad story about your mother and her problems with benzo's.  I hope she'll finally be able to get off them and will feel much better soon.

[[Pa...]]

I just wanted to vent a little.  My girlfriend basically CT'd off Klonopin at the very end of May.  It was .5 once daily for sleep and we had no idea that it could "injure" her.  Since that time, she won't see me or talk to me on the phone.  She will only communicate with me via text.  It has been a little over 3 months and still the same.  She is able to care for her boys, gets them to school, takes them to swim practice, goes to the grocery store etc.  Our relationship was amazing at the end of May.  Now, it's text messages that I initiate 95% of the time unless she is worried about something like when her hair was falling out.  When I look back at our text messages then and now, it's a 180-degree turn.  She is able to talk to her mother, who is in Brazil, on the phone and texts her.  Her mom has no idea what's going on.  I have a good relationship with her and act as if everything is fine since telling her wouldn't do anything to help the situation.  My girlfriend has always isolated when she has had heavy situations to deal with, but I was always the one who would coax her out of her shell and at least make her laugh a little.  Now, I'm the one being shut out.  It's so confusing to me.  I am the only person who knows what she's dealing with, so I think that's the reason why.  She told me via text on June 23rd that she didn't like to talk about what's going on because it makes the symptoms worse and every time I reach out, it reminds her that she's not well. Her quote was "even the thought of having to explain is overwhelming".  We obviously don't live together and I'm not going to just show up at her door without being invited as I think that would only push her further away.  Has anyone experienced anything like this?  We are literally best friends.  This si so confusing!!!

 

I can tell you what may be going on, she's dead inside, she can't access the feelings she used to have for you, this is what the drug does to us.  Her feelings for you may still be there but the drug has stolen her connections to herself and others, she's lost and the only way she'll come back is through recovery.  She will recover but it will take a long time and in that time, things may change for you and for her, we just don't know who we'll be when we surface from this misery. 

 

She's able to speak with her mother and care for her boys because these are her must do priorities, she's taking care of what she absolutely has to and that's all she's capable of right now.  I know this is hard to hear but the best thing you can do for her and your possible future relationship is to stop contacting her as often.  Your attempts to draw her out are likely causing her stress which can make her symptoms worse.

 

I hope you can end up together when she recovers but in the meantime, I might be better for you both if you stepped back a bit by letting her know you still care but you're going to give her the space she needs to recover. 

[[Ha...]]

raziel101,

 

It’s so lovely that your mother has you supporting her through this traumatic time.

Just wondering, does she HAVE to withdraw completely from the benzos? I ask, because it is obviously causing her so much distress and terror. Or, could she do an incredibly slow taper?

I am 67 and have only just survived my tapering journey. I feel for her.

Forgive me if I have misunderstood the situation.

My very best wishes to you and your mother.

Hardy.