FAMILY MEMBER/PARTNERS SUPPORT THREAD

[[Mr...]]

Hello!

 

I just joined the forum. My husband was on lorazepam for a few month last year and has been off now for 9 months but continues to go through significant withdrawal symptoms. There are good days and bad days but the good days never last for very long. I'm trying my best to be there for him but I'm also having a tough time. This withdrawal is taking quite the toll on our relationship. There are definitely more good bad days than good for my husband. He is always complaining and everything is about "the benzos" or because of "the benzos". There isn't a single day that goes by where benzos aren't mentioned. I know that I can't truly understand how he feels and that what he is going through is agonizing but I sometimes feel like the way he is handling this whole thing is selfish and he's forgetting that our marriage and relationship is important too. We have been married for a little over 2 years, are in our thirties and I'm ready to start having kids and move on to the next steps and I feel like this whole thing is ruining that.

 

I'm sorry if this seems heartless or whatnot, just needed to vent a little. I'm hoping to hear from others how/what they did to get through this and keep their relationships. Thanks!

Wifey,

Your husband is completely overwhelmed, even on the good days.  Benzo's impair the brain's ability to process the compounds that keep our behaviors in balance.  If your husband stopped cold turkey, without any kind of tapered cessation, the side effects can be extreme.  There is no easy way to deal with this.  You must remember that the behaviors you see now from your husband are not his true nature, and he is locked in a struggle that those who haven't been through it can't imagine.  My wife was on klonopin for many years, and it took 19 months of slow liquid titration to get off safely.  She had to reinstate briefly before we were able to figure out a safe method of withdrawal.  Doctors are poorly equipped to advise about this process, and those that are informed are few and far between.  Time will heal this, but it will require patience the likes of which you have never had to tap before.  Good luck. Mr. P 

[[de...]]

Not sure how active this thread is, but I needed to vent ...

 

My mother is going through hell, I know this, and I try to be good for her.  Some days, though, it's just so hard.   

 

I tried to get my father to do some titration calculations, so that he'll know a bit of what I'm dealing with, to get him involved (because god forbid what if I suddenly kaput, my own health issues, car accident, whatever).  He made a vague effort, casually said it wasn't that complicated, then when I explained what he didn't understand, asked can't you just do it approximately, to which I said absolutely not, after which he made no further effort. 

 

That, just one example, and it makes me so angry, so resentful, because it reminds me of the past, because I feel like I'm the only one taking responsibility, because I'm so stressed and exhausted.  I wonder what I did in my past lives that was so bad that I'm being punished like this now.  She asks this, too.  I feel selfish even thinking about myself; I witness every day how much she suffers.  But caretakers suffer as well.  And today is just  and  :'(

[[Mr...]]

Not sure how active this thread is, but I needed to vent ...

 

My mother is going through hell, I know this, and I try to be good for her.  Some days, though, it's just so hard.   

 

I tried to get my father to do some titration calculations, so that he'll know a bit of what I'm dealing with, to get him involved (because god forbid what if I suddenly kaput, my own health issues, car accident, whatever).  He made a vague effort, casually said it wasn't that complicated, then when I explained what he didn't understand, asked can't you just do it approximately, to which I said absolutely not, after which he made no further effort. 

 

That, just one example, and it makes me so angry, so resentful, because it reminds me of the past, because I feel like I'm the only one taking responsibility, because I'm so stressed and exhausted.  I wonder what I did in my past lives that was so bad that I'm being punished like this now.  She asks this, too.  I feel selfish even thinking about myself; I witness every day how much she suffers.  But caretakers suffer as well.  And today is just  and  :'(

Dear Delta,

This site was once pretty active.  Now, not so much.  I keep looking in to see what is happening since it was such a help for me when my wife was recovering, and I hope the lack of activity is an indication that things are improving.  There are lots of support groups developing now besides this one, as well. I can tell you this, family and the medical community can be the sources of the most disappointing experiences you're going to encounter.  Caretakers take on a huge burden (if they do it properly) and there are no short cuts.  It sounds like your father is pretty clueless about how sick your mother is.  We spent 19 months titrating 2.5 mg clonopin in order to make the side effects manageable for my wife.  It is dismaying to see how much effect even a small deviation makes in the progress. Like you, I imagine your father is overwhelmed at the prospect of having to nurture someone back to health.  Some folks just don't get it.  Your mother is so lucky to have your support.  To the extent that you can, you do need to take care of yourself whenever you can.  Take some time to step away for a few hours, if possible. My work was a great diversion for me, though I still lost about 25 pounds in the process from the stress. For what it's worth, I check in here just about every day....

Mr. P 

[[de...]]

Dear Mr. P,

 

Thank you for that.  It was such comfort to me.  I always feel guilty about complaining, feel like I'm misrepresenting my loved ones just by the fact that it's my perspective only that's being laundered.  But your words were not only kind but with insight, as well as empathy.  I'm sure my father is overwhelmed, even if he can't say so, even if his sharing with me would give me solace.  And right, besides that, family and the medical community have already proven bitterly disappointing.  As for my mother being lucky to have my support, you're kind to say so, but I don't feel useful.  I feel quite useless actually, and helpless.  This forum is right now my lifesaver.

 

I think I'm starting to get this, that we may have been tapering too fast, that we need to do this very slowly just to make the symptoms bearable, so my mother can eat and sleep and not feel like she's at death's doorstep each day, because even small reductions in drug dose cause havoc, and I must accept that I can't yank that poison out of her like I want to but plan on 19 months if need be.

 

May I ask how you titrated?  After my mother stabilizes at the upped dose, I plan to microtaper, using liquid.  I've been looking for the right method, for Xanax, but have heard conflicting thoughts about what's best -- water, milk, vodka, propylene glycol, OraPlus/OraSweet -- on this forum and from pharmacists. 

 

Mr. Potato (love this name, makes me almost chuckle), how is Mrs. Potato these days?  I'm glad you're not needing this thread as much, but I'm unsure if its lack of activity means things are really improving.  After I joined this forum over a month ago, I saw others joining for their parents, and sort of took encouragement from that, the camaraderie I guess, but then haven't seen them since, and this makes me wonder what they might be going through.  So, thank you for checking in ...

 

delta1

 

[[Mr...]]

Dear Mr. P,

 

Thank you for that.  It was such comfort to me.  I always feel guilty about complaining, feel like I'm misrepresenting my loved ones just by the fact that it's my perspective only that's being laundered.  But your words were not only kind but with insight, as well as empathy.  I'm sure my father is overwhelmed, even if he can't say so, even if his sharing with me would give me solace.  And right, besides that, family and the medical community have already proven bitterly disappointing.  As for my mother being lucky to have my support, you're kind to say so, but I don't feel useful.  I feel quite useless actually, and helpless.  This forum is right now my lifesaver.

 

I think I'm starting to get this, that we may have been tapering too fast, that we need to do this very slowly just to make the symptoms bearable, so my mother can eat and sleep and not feel like she's at death's doorstep each day, because even small reductions in drug dose cause havoc, and I must accept that I can't yank that poison out of her like I want to but plan on 19 months if need be.

 

May I ask how you titrated?  After my mother stabilizes at the upped dose, I plan to microtaper, using liquid.  I've been looking for the right method, for Xanax, but have heard conflicting thoughts about what's best -- water, milk, vodka, propylene glycol, OraPlus/OraSweet -- on this forum and from pharmacists. 

 

Mr. Potato (love this name, makes me almost chuckle), how is Mrs. Potato these days?  I'm glad you're not needing this thread as much, but I'm unsure if its lack of activity means things are really improving.  After I joined this forum over a month ago, I saw others joining for their parents, and sort of took encouragement from that, the camaraderie I guess, but then haven't seen them since, and this makes me wonder what they might be going through.  So, thank you for checking in ...

 

delta1

delta1,

In reference to your question about titration method, we did milk.  Mrs. P would crush and dissolve her daily dose (2.5 mg) in 100 ml of milk.  As I said before, anything that will thoroughly dissolve the drug into solution should work.  I seem to recall some vague reference to the fat in whole milk as being beneficial, so we went that route.  We didn't have any allergy concerns, however.  Our tool set was a stainless mortar and pestle, though a spoon and saucer would work just as well, I suspect. Also a glass 100 ml graduated cylinder for dosage measurement.  Premeasure the liquid volume ( 100 ml milk, in our case), dissolve the powdered drug thoroughly in the liquid in a separate container, and using a child's 10 ml dosage syringe (usually free from most pharmacies), we would withdraw 1 ml first day, 2ml second day, 3ml third day, and so on, drinking the remainder. This gradually reduces the dosage very specifically and allows you to hold or sustain dosage as you see the need, or continue to reduce if sxs are manageable.  It is painfully slow, but we found that allowed the kind of control Mrs. P needed.  There would be times when she would feel the need to hold at a dosage level for a couple of days, then continue to cut.  We got all of the supplies from Amazon, though whatever source is fine. 

Mrs. P is regaining her life, though there are still ups and downs.  As I may have mentioned, there were some attenuating factors that contributed to some of her symptoms, and that is primarily what she must deal with now.  The benzo effect is gone, however. 

Shared experience makes all the difference when looking for support going through this.  That is the only place you can find the understanding required to help in the dark times.  This forum was essential for me during the times of most crisis, and I still come back in an effort to help if I can.  An homage to the folks that helped me, I guess. 

Mr. P

[[de...]]

I'm no stranger to hardship, but this is SO DAMN HARD.  This nonstop hell of emergency after catastrophe followed by misery.  The posts here, people going through unimaginable suffering, thankful for even 1 or 2 hours of sleep, unable to eat, or pushed to the precipice because diarrhea's depleting their body, I read about them and it's heartbreaking!  I feel so desperate, and so scared I'll lose her. 

[[La...]]

I'm no stranger to hardship, but this is SO DAMN HARD.  This nonstop hell of emergency after catastrophe followed by misery.  The posts here, people going through unimaginable suffering, thankful for even 1 or 2 hours of sleep, unable to eat, or pushed to the precipice because diarrhea's depleting their body, I read about them and it's heartbreaking!  I feel so desperate, and so scared I'll lose her.

 

Hi Delta- Yes, this is SO INCREDIBLY HARD!! We are feel like we are living through a daily state of emergency, just trying to survive each day.  So sorry for all you and your mom are going through.  Hope things start getting better for you soon. 

[[de...]]

Thanks for that kind reply, Laura!  Right, just trying to survive each day.  I feel for you and your sister, too.  She sounds like she was a wonderful person until prescription drugs got a hold of her.  I'm sure her old self is still there, just waiting to resurface.  Hope all goes well for your family

[[La...]]

Thanks for that kind reply, Laura!  Right, just trying to survive each day.  I feel for you and your sister, too.  She sounds like she was a wonderful person until prescription drugs got a hold of her.  I'm sure her old self is still there, just waiting to resurface.  Hope all goes well for your family

 

Thanks, and yes, she was the sweetest and happiest girl in the world.  She was a high functioning person with Down Syndrome.  She took public transportation to a job she loved for 18 years, and she participated in sports.  She would still have her life if we stayed away from doctors. Right now, we are struggling to get through the day.  She seems to have developed a phobia of going to the bathroom (#2) and the w/d seems to be affecting her GI tract, so she's constantly going to the bathroom, which makes everyday extremely difficult.  Earlier in the week, we thought we were starting to get a settling, as we were starting to seek pockets of calming (a couple hours here and there). But the past couple of days have been really awful--she's been much more amped up(we have no idea why) and now we are worried about whether we are going to make it out of this nightmare.  (I'm also worried that my mother who is 79 will end up dying from the stress and she'll never get to see my sister happy again)

 

Good luck to you as well with you mom.  I hope her anxiety settles down too.

[[de...]]

And she WILL get her life back, you MUST believe that, because you need to, and because it's the truth as I've heard from others here, and I believe these wise buddies wholeheartedly, even though every day is extremely hard. 

 

I understand about struggling to get through each day, each and every single day.  I'm sure your sister's phobia is about anxiety, high anxiety.  I wish I could tell you how to resolve it, but I don't have a way, which frustrates me to no end, as my mom's developed phobias, too, regarding spit and dirt/dust, which makes every day extremely difficult, yes. 

 

These pockets of calm, when do they appear, after taking a dose?  Keeping notes on her daily events (dosage times, eating times, pee times, everything) could help you figure some things out, if you're not doing this already.   

 

Past couple days of being amped up, has anything changed in her routine?  Has she taken any vitamins, supplements, herbs, other drugs?  Did she eat anything out of the ordinary?  I'm asking because we found out that certain things can exacerbate w/d symptoms; for example, in our case, Chinese herbs spiked my mother's Xanax intake (to 8-9mg per day from around 1-2mg), as did Prozac (again to 8-9mg Xanax daily), which her then-doctor reinstated to stave off the symptoms but obviously didn't work at all. 

 

Also, I understand that Ativan doesn't have that long of a half-life, which could take your sister on highs and lows of blood levels, making her symptoms worse.  It's been that way with Xanax for my mother, causing terrible interdose withdrawals, so we're in the process of crossing over to Valium (partially or fully, not sure yet); she also tried Ativan, at a psychiatrist's suggestion that it was "cleaner" than Xanax blah blah blah, but it actually made her even more dizzy and didn't help with anxiety much!  These so-called doctors! 

 

I'm worried about your mother and the stress, too.  I know what that's about.  It sounds like you might be doing a lot there for your family, but you've got to remind everyone that this will be a process, that it's really rough right now, but you will find your way out of this nightmare. 

 

Sorry for the long post, but I wanted you to know that you can find support here, so keep asking questions about everything if you need to.  Okay?  Otay then! 

[[La...]]

And she WILL get her life back, you MUST believe that, because you need to, and because it's the truth as I've heard from others here, and I believe these wise buddies wholeheartedly, even though every day is extremely hard. 

 

I understand about struggling to get through each day, each and every single day.  I'm sure your sister's phobia is about anxiety, high anxiety.  I wish I could tell you how to resolve it, but I don't have a way, which frustrates me to no end, as my mom's developed phobias, too, regarding spit and dirt/dust, which makes every day extremely difficult, yes. 

 

These pockets of calm, when do they appear, after taking a dose?  Keeping notes on her daily events (dosage times, eating times, pee times, everything) could help you figure some things out, if you're not doing this already.   

 

Past couple days of being amped up, has anything changed in her routine?  Has she taken any vitamins, supplements, herbs, other drugs?  Did she eat anything out of the ordinary?  I'm asking because we found out that certain things can exacerbate w/d symptoms; for example, in our case, Chinese herbs spiked my mother's Xanax intake (to 8-9mg per day from around 1-2mg), as did Prozac (again to 8-9mg Xanax daily), which her then-doctor reinstated to stave off the symptoms but obviously didn't work at all. 

 

Also, I understand that Ativan doesn't have that long of a half-life, which could take your sister on highs and lows of blood levels, making her symptoms worse.  It's been that way with Xanax for my mother, causing terrible interdose withdrawals, so we're in the process of crossing over to Valium (partially or fully, not sure yet); she also tried Ativan, at a psychiatrist's suggestion that it was "cleaner" than Xanax blah blah blah, but it actually made her even more dizzy and didn't help with anxiety much!  These so-called doctors! 

 

I'm worried about your mother and the stress, too.  I know what that's about.  It sounds like you might be doing a lot there for your family, but you've got to remind everyone that this will be a process, that it's really rough right now, but you will find your way out of this nightmare. 

 

Sorry for the long post, but I wanted you to know that you can find support here, so keep asking questions about everything if you need to.  Okay?  Otay then!

 

Thanks so much for your response.  Having a day from hell here.  I do have journals of everything, so I'm going back through and trying to figure out what could have triggered things. 

 

The extreme fear of going to the bathroom (#2) is killing us.  We give her 6 bananas a day to keep diarrhea away, but she keeps going #2 everyday multiple times (she hasn't had a break from it since November) and it absolutely terrifies her.

 

When we were too nervous to try Vistaril, we tried adding a couple of other things to bring down the anxiety. We added bacopa (over a week ago) and recently started trying benedryl and chlortrimaton at 5pm (alternating days) to try to take the edge off.  On Mon and Tue, we thought it was working, as our nights were not as anxiety ridden and we had an easier time getting her to bed (she's afraid of sleeping b/c she wakes up to morning #2).  Then, all of the sudden, our mornings Thurs, Fri, and today, and basically the whole day have been amped up (worse than usual).

 

I'm wondering about the bacopa--have seen some people say it helps at first then the anxiety goes up. So we are stopping that.  We are nervous about the benedryl and chlortrimaton (though we did those last summer without a problem).  Today, we have no choice but to try Vistaril.

 

Thanks so much for your support.  We've been holding for a while and have seen other symptoms go away, but this anxiety keeps getting worse. 

 

also, found this post on bacopa can help at first and then make anxiety worse http://www.benzobuddies.org/forum/index.php?topic=193745.msg2555242#msg2555242  So, maybe that's part of our problem.  Didn't give it to her today. Did give her the vistaril at 5pm, but so far it has not helped (she's extremely amped up b/c of big #2 at 5:15).  Not sure what we are going to do. Hoping and praying that stopping the bacopa will help things settle down and get to a more tolerable level

[[de...]]

The diarrhea most definitely is from the Trazodone withdrawal.  Again, regardless of what the "doctors" say, because she was C/T'd from the Traz on 8/1, she could still be going through the antidepressant w/d, which has been complicated by the Ativan having been added, so that the diarrhea could now be from the benzo w/d that she's going through. 

 

But to get her some relief, have you thought about upping the Ativan just ever so slightly, if that could help with the anxiety?  Or consider adding/switching to Valium to relieve the interdose w/d (because anxiety really amps up during interdose w/d)?  This is what we've done, and it's helped with the anxiety.  I can give you details about this if you need. 

 

You mentioned other symptoms going away while holding.  What symptoms were these? 

 

So the bacopa and other meds, the thing about having been C/T'd off an AD is that it sensitizes the body to everything, even medicinal herbs, that might have neuroactive/psychoactive activity.  So it's probably good that you guys are stopping the bacopa at this point.  And do be careful with Vistaril/hydroxyzine.  We considered it but stayed away because of its potential to prolong the QT interval. 

 

You know what helped me figure out about Prozac C/T having sensitized my mother's body?  And the later reinstated Prozac, as well as herbs, increasing her Xanax intake?  I graphed our data.  This happened only months after my mom suffered through the increased anxiety, when I finally got around to having time to do the graphing, and was possible because we weren't tapering yet, so had no regimen but took Xanax as needed.  I was able to see what Prozac, herbs, or whatever else she took was doing to her Xanax intake, whether nothing or increasing it.  This probably wouldn't work if your sister's Ativan intake is on a schedule, but if you think plotting your data could be of any use, might be worth a try. 

[[La...]]

The diarrhea most definitely is from the Trazodone withdrawal.  Again, regardless of what the "doctors" say, because she was C/T'd from the Traz on 8/1, she could still be going through the antidepressant w/d, which has been complicated by the Ativan having been added, so that the diarrhea could now be from the benzo w/d that she's going through. 

 

But to get her some relief, have you thought about upping the Ativan just ever so slightly, if that could help with the anxiety?  Or consider adding/switching to Valium to relieve the interdose w/d (because anxiety really amps up during interdose w/d)?  This is what we've done, and it's helped with the anxiety.  I can give you details about this if you need. 

 

You mentioned other symptoms going away while holding.  What symptoms were these? 

 

So the bacopa and other meds, the thing about having been C/T'd off an AD is that it sensitizes the body to everything, even medicinal herbs, that might have neuroactive/psychoactive activity.  So it's probably good that you guys are stopping the bacopa at this point.  And do be careful with Vistaril/hydroxyzine.  We considered it but stayed away because of its potential to prolong the QT interval. 

 

You know what helped me figure out about Prozac C/T having sensitized my mother's body?  And the later reinstated Prozac, as well as herbs, increasing her Xanax intake?  I graphed our data.  This happened only months after my mom suffered through the increased anxiety, when I finally got around to having time to do the graphing, and was possible because we weren't tapering yet, so had no regimen but took Xanax as needed.  I was able to see what Prozac, herbs, or whatever else she took was doing to her Xanax intake, whether nothing or increasing it.  This probably wouldn't work if your sister's Ativan intake is on a schedule, but if you think plotting your data could be of any use, might be worth a try.

 

Oh, Gosh, thanks so much for your response, but I just realized I have to fix my signature. The Trazodone w/d was in 2016--we are sure that is gone.  We saw those symptoms, knew what they were and they went away (and she had watery diarrhea from the Trazodone--that's was finally made us realize the Trazodone was causing all the emotional problems we were seeing back then, and that it was not from the Lyme). Sorry, I'll clarify everything later.

 

We're sure everything we are dealing with now is from the ativan w/d (plus, any possible herbs like bacopa that could be amping her up). 

 

We've been holding for a while and have seen one ear get better, morning akathisia go away, evening akathisia improve (almost gone now, very mild now).,  But the anxiety has really increased.  I think it's possible the sudden uptick the past couple of days could be from the bacopa).  And we are assuming the ativan w/d is also affecting her GI tract, which is why there is so much constant going to the bathroom for #2. Though we haven't had diarrhea, we are assuming we would be having it if not for all the bananas.  Throughout the w/d from the ativan, we have had changes in #2,  but this is the first time it's been like this and we have needed to give her so many bananas.

 

We are really in bad shape right now. Worried we are going to end up in the hospital if we can't calm things down for her.  Can't believe that just last Mon and Tues we thought we were going to survive this and make it out of this, we were really thinking we were on our way to getting a settling and now the past 3 days have been worse than ever

 

No way for us to switch to valium.  Tested that interdose w/d idea last year, didn't  make a difference. 

 

Thanks for all of your thoughts on this.  Thanks so much for your support.  Not sure we are going to make it.

 

the constant going to the bathroom for #2 is really breaking us.  We can't seem to get her constipated or just slow down the constant doing #2.  We used to have evenings relatively free of #2, but not the past few nights, which has really amped her up. Vistaril isn't calming her at all. Worried we are out of options.  Really need a miracle

[[de...]]

I am so sorry you are going through this, that your sister is suffering so much.  I know right now it feels like you won't make it, and it's been a hell day for you, but unfortunately I think it is like that, this w/d hell, up and down, getting worse again after experiencing a few "good" days, making things feel crazy all over again, only to repeat it all yet again! 

 

What I'm trying to say is, hang in there, you and your sister and family will get through this very bad spot.  I am sending you my best wishes and thoughts. 

 

I hope eliminating the bacopa will bring some calm very soon, and no doubt her GI issues are from the Ativan w/d.  In some folks, benzo w/d seems to wreak havoc on their GI system -- nausea, vomiting, constipation, diarrhea, bloating, pain, etc.  Could be the GI issues are linked with anxiety, so that the increased anxiety is making her GI issues worse as well.  I don't know how you guys tried out Valium, but really wish you had options in terms of benzos, because it seems Ativan is really making your sister suffer. 

 

When my mother was in really bad shape because of anxiety, and already taking a lot of Xanax, we tried OTC sleep aids (Unisom, melatonin) sometimes, because at least then she wouldn't be suffering through the anxiety, just seemed better to get her to sleep through the torture if possible.

 

I'm sure you've been to the hospital many times already so you probably know, but I can tell you that when we've ended up in the ER, many times over when things were really bad, all they'd do is poke her with needles and x-ray the hell out of her and do all kinds of tests, only to find that there's nothing physically wrong and only to resort to more drugs to calm her, which we could've managed at home by just giving her more Xanax.  If you do end up going to the hospital, I really hope they can help some.  But more than that, I hope your sister calms down soon. 

 

 

[[de...]]

And you're welcome!  Anytime!

[[La...]]

I am so sorry you are going through this, that your sister is suffering so much.  I know right now it feels like you won't make it, and it's been a hell day for you, but unfortunately I think it is like that, this w/d hell, up and down, getting worse again after experiencing a few "good" days, making things feel crazy all over again, only to repeat it all yet again! 

 

What I'm trying to say is, hang in there, you and your sister and family will get through this very bad spot.  I am sending you my best wishes and thoughts. 

 

I hope eliminating the bacopa will bring some calm very soon, and no doubt her GI issues are from the Ativan w/d.  In some folks, benzo w/d seems to wreak havoc on their GI system -- nausea, vomiting, constipation, diarrhea, bloating, pain, etc.  Could be the GI issues are linked with anxiety, so that the increased anxiety is making her GI issues worse as well.  I don't know how you guys tried out Valium, but really wish you had options in terms of benzos, because it seems Ativan is really making your sister suffer. 

 

When my mother was in really bad shape because of anxiety, and already taking a lot of Xanax, we tried OTC sleep aids (Unisom, melatonin) sometimes, because at least then she wouldn't be suffering through the anxiety, just seemed better to get her to sleep through the torture if possible.

 

I'm sure you've been to the hospital many times already so you probably know, but I can tell you that when we've ended up in the ER, many times over when things were really bad, all they'd do is poke her with needles and x-ray the hell out of her and do all kinds of tests, only to find that there's nothing physically wrong and only to resort to more drugs to calm her, which we could've managed at home by just giving her more Xanax.  If you do end up going to the hospital, I really hope they can help some.  But more than that, I hope your sister calms down soon.

 

OMG, thank you so much for your kindness and support.  I can't tell you how much chatting with you has helped me/us.

 

I can't believe it, but she actually calmed down by 9pm (after all the bathroom trips stopped) and she wasn't afraid of going to sleep (!!!!) I'm still in shock--usually getting her to sleep is a nightmare.  She's usually terrified of falling asleep b/c she's afraid of waking up and going to the bathroom.  But tonight, she willingly got in bed, and wasn't screaming/yelling and resisting sleep.  I hope and pray that it was the bacopa and that things will settle down.  And, now that we actually survived the day, I guess we are back to feeling that we can get through this (If we survived today, we kind of feel like we can survive anything)

 

Yes, we definitely seem to be in the phase of having the w/d affect her GI tract-it's been going on for a while, so we kind of think that it has to settle at some point. 

 

As for valium, we don't have anyway of getting that. Also, before we got involved w/Ativan, she tried Valium once before (we had it on hand for phobia of blood work).  The first time it worked and calmed her down, and a week later we tried it and it was like water for her (absolutely no effect).  And that phobia was basically from the medical system--she was never afraid of blood work until she got IBS/CFS/Fibromyalgia and was passed from doctor to doctor (could have been 10) and each ordered more blood work, so that she ended up being terrified and needing 5 people to hold her down. And NONE of those doctors helped her at all--we had to get online, do our own research on how to cure those conditions (thankfully, there are good doctors out there with expertise in those disorders and the put their protocols online)--sorry for going off on a tangent, but it makes me so angry to think about all my sister has been through and how we got into this mess.

 

We kind of think that Valium was like water b/c she seems to metabolizes things differently (I know this was the case for the Trazodone--apparently, something like 10% of people have trouble breaking down an evil metabolite of trazodone and it builds up in their system and causes serious anxiety, agitation, which is what we saw)

 

Oh, yes, we know all about the hospital--we honestly feel like that would be the end for her, so we are trying as hard as we can to go slow and makes this as gentle as possible for her. At the hospital, they would deny it was the benzo, say she's just crazy, involuntarily commit her and pump her full of drugs. Since she's MR, they have already indicated that they can override my parents legal guardianship.  We were actually at the hospital in April 2017 after she kept attacking us one morning (totally from the Ativan--she's never been violent or aggressive a day in her life, never even said a mean word, until we got on the poison).  At the hospital, though we told them we were in the middle of the taper off ativan and that she's never been like this until the drugs (and I'm actually a clinical psychologist telling them this as her sister and someone from my profession), they told us "Oh, no, it's not the withdrawal" !!!!!!!!!!!!!!!!!!!!!!! So, we know what we would get from them--they would just deny it's the drug and tell us it's her.

 

thanks again for your help.  I'll have to figure out how to adjust the signature so I can explain things better.

 

And I hope things are going better for your mother and her anxiety (anxiety has definitely been our worst w/d symptom to deal with)

 

[[de...]]

Oh, I am so relieved and happy for you that your sister calmed down! 

 

I came back to check once more before going to sleep, in case you'd written again.  I entirely understand how desperately awful this can be, so if my chatting with you helped at all, I'm just glad I could do that for you.  People here have been so kind to me as well, and it's like we're all in this horrible, terrible mess together, pulling for each other, so don't hesitate to call on support when you need it, and ask questions on any board. 

 

I hope it was the bacopa, too, so that eliminating it gives her lots of relief.  Right, if you can survive today, you can survive anything 

 

These doctors and hospitals, it just makes me so angry what they did to your sister, how inept they are.  And exactly, they'd deny that she's going through Ativan w/d, label her mentally ill instead, and all that.  Complete nonsense!  We know all about it, and having to figure everything out ourselves, I mean, every last damn thing!  Don't ever let them tell you that your sister is this or that.  You know her better than they will ever do. 

 

The thing about Valium, yeah, we can talk about it more, but it was funny for us, too, at first, like it had no effect the few isolated times she was given Valium.  But that was before, and now, we know about the benzo equivalencies better, and with the Xanax she's taking (because we're only partially crossed over), it seems to help.  Again, we can chat about this more if you want.  For now, just very glad to hear your sister's a little better, whew  and hope you get some rest as well. 

[[La...]]

Delta-

 

Thanks again for your support.  Overall, this morning seems to be better (not as horrible as the past few days), so hopefully things will start to settle down now that we stopped the bacopa. I found another thread on bacopa, where a couple of people also had trouble and found that it helped at first and then increased the anxiety.  One person, who was on it longer than we were, said that it was taking them a while to get back to baseline, so time will tell.  But we are having more pockets of calm and quiet today and she seems more interested in the DVDs we have for her.  The anxiety over going to the bathroom is really the worst problem we've had in this w/d nightmare. We just keep hoping it will settle down soon.

[[de...]]

Laura4321, you're welcome and very good news!  I'm so glad your sister's a little better today.  These poor bodies, they've been through the wringer, become so hypersensitized that anything could potentially set them off.  Do keep us updated on how she's doing 

[[La...]]

Hi Delta-

 

Overall, today was definitely better--much more tolerable level, though there were times she was really amped up, it was not as constant as it was yesterday.  We also had less bathroom trips, which really helps.  Thanks again. Hope things settle soon for your mom.

[[de...]]

Hi Laura4321!

 

How is your sister's day today off the bacopa?  Has she eaten much today? 

 

Just wanted to check in. 

[[de...]]

We're still here!  Maybe not as active as other threads, but still here if anyone feels lost and could use this thread 

[[de...]]

Bump here too because I am still here 

 

Come talk to me if you need family member/partners support, or er whatever ...

[[de...]]

Nobody ever comes to this thread anyway, so I think I'll just use it right now like my personal blog, so I can unload, so I can hopefully move on from this very difficult spot. 

 

Typing that just now, just that, made my eyes well up.  That I have to come to this anonymous place full of strangers, for whatever sliver of solace I can grab.  Or that we're in this never-ending hell, no end in sight.  Or that I can't do a damn thing to help my suffering mum.  To call it hell seems laughable, because then what was that thing we were in all of last year? 

 

I miss my sense of humor, I miss my mom, I miss the normalcy of ordinary days, and I miss not feeling punished everyday.  What did I do in my past lives to deserve this?  What did my mother do?  We were, are, good people, never hurt anybody, worked hard all our lives, don't even like to litter a chewing-gum wrapper.  So why this?

 

Is it because I questioned life so much in the past, asked of life what its meaning was, what its purpose might be?  Don't you know, life, that I just wanted to get it right?  I wasn't trying to hassle you.  Don't you know this, stupid life? 

 

We've held for months, hoping for some symptomatic relief as holding seems to have helped some BBs.  I've reassured her daily that she's not dying, that I won't let her, that she's healing as we speak, that her body is doing amazing work even if she can't feel its results just yet.  Yet nothing, no relief.  She endures daily torture still, and I feel like a damn liar. 

 

I've poured coffee into my body even as it suffers from that very thing, because it taxes my already-fatigued adrenals.  But never mind my own health issues, because I need to be able to think, to work out how we're going about Mum's tapering.  Without the black liquid, I stare into the words or numbers and can't understand what they're trying to tell me, just sit there numb.  And I know the crash is coming, after a few days straight of coffee coffee coffee, where I will descend into an even darker level, until my body's somewhat done ailing and can find its way back to the surface for a breath, even if I gasp for that one breath and go under again.  Still I drink, because there's something more important. 

 

This godsend forum, when I first found it?  I've had to stay away from it too.  I'm learning so much, about what I didn't know before, about what I need to know now.  I'll remain ever grateful for BB, but the throng of pain grew to be overwhelming as my own stress intensified.  I flitted about answering a post that I could here and there, because it made me feel useful for those few minutes at least, like I was being helpful, like I wasn't able to for my mom.  But, you know, the stress doesn't lift, so then it started to irritate, especially when some people would post repeatedly, constantly, about what seemed to be asinine things that wasn't about to help other BBs with any information or such but appeared just to be about sheer self-indulgence.  And then when I do try to help someone understand what they've somehow confused (didn't they read the Ashton Manual?!), and that person doesn't even seem to make the effort to try reading and working it out for themselves, well that hits on a longstanding dislike I have of laziness, looking for shortcuts, waiting for others to do all the work for them, which just boils me.  Oh, I say to myself, it's a support forum, takes all kinds, right?  Yeah, whatever! 

 

I'm running out of steam; this is good, maybe stress level going down a little.  Or I'm just tired, even with the large cup of McDonald's coffee right next to my laptop.  And I said 10 sugars, but it's not even attempting to feign sweet, stupid McDonald's employee!  I don't get it, just don't get it, all this suffering, why the universe is so unjust, why humanity is so messed up, so that we have a world where certain people can sell toxic drugs, to amass money to feed their greed, at the cost of other people going through hell.  And on top of that, have to drink bitter undoctored coffee!

 

Where are my misery cohorts?  What, no family members?  Why not?! 

[[Er...]]

maybe not too many family members sign into this forum.  I just started.  sorry about your mother and whatever happened.  Haven't read much here yet.