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LauraJK - Sister has lost will to live, part 3

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Posted 4/22/2017 2:52 PM (GMT 0)
Just want to send hugs to you. You sound like the very best sister in the whole world.

Sorry your sister is going through this.

My son is having a rough time and we are both sensitive to meds and have the single detox gene.

LLMD said it's only when it is a double gene that the person has real trouble healing.

In other words it may be uncomfortable and worse than for most people but it is possible.

So try to hang in there (hopefully she has single gene). Sending lots of prayers.
Posted 4/22/2017 2:58 PM (GMT 0)
hi Summer

Thanks so much for your response.

Yeah, I haven't gotten as much support from that site, not sure why, perhaps just b/c there's not much a person can do other than suffer through.

We don't have any way of doing the water titration, so we are having to cut, sort, match pills. And we are having to guess as the size. Right now, maybe we are at 1/16 or a bit less.

Unfortunately, given how hard this process is on my sister, we are probably going to have to go much smaller before we dare jump.

The way things are working now, we kind of have a sense of interdose withdrawal--so we generally get a calm the morning after the dose, then extreme anxiety/terror at night until bed (dose time) And the cycle repeats. Right now, we are thankful we still have plenty of pill crumbs to go (so we can get a calm the next day)--we are terrified as to what it will be like once we make that jump. That's completely unknown territory to us. So, right now, we just want to keep going forward, as she hopefully adjusts, to smaller and smaller crumbs. Before we make the jump (if we survive that long) we want to see if we can get her stable on the lowest dose (smallest crumb) possible.

Honestly, I've never been so terrified in my life. I'm scared we'll never get her back. We haven't had many "windows"--we had "windows" on 10/29, 10/30,(few hours each) with her normal chatty, smiley self, talking about how her body keeps changing every month (symptoms). Then another one 3/12, where it felt like my normal sister, very chatty, smiley.

Yes, I've heard that the withdrawal is not only during the tapering process, but the next phase is when you stop all together--we are very scared of this. I'm nervous simply b/c this has already been so hard on her--it's obvious to me that it's perhaps going to take longer for her than for others (I'm sure the special chemistry of Down Syndrome is probably playing a role here)
Posted 4/22/2017 3:02 PM (GMT 0)
Huddie--thanks so much for the support. I hope you are right that it's still possible for her to recover and heal from this. I just hope we can get her through.



Also, just got a response at benzobuddies, and it doesn't look like Gabapentin is an option for us. Person said it's controversial at the forum, but for her it ended up being a nightmare, softened the withdrawal from the benzo, but then had a withdrawal of it's own, which was even more horrific. Given our bad luck, and my sister's sensitivity to medications, I don't think its a good option.

Back to splitting the dose and hoping we/she survive

Update: just found another comment over at benzobuddies that seems to apply and reinforce my thoughts:

"Be careful with antidepressants. They have lots of side effects and can really screw with an already sensitized nervous system. Most have an unbearable 4 week come up period which you probably won't comply with in benzo wd. They can then have their own withdrawal syndrome just as bad as benzos for certain people, switching one poison for other. You might as well just do a slower taper."


Thanks again to all here.

Post Edited (LauraJK) : 4/22/2017 10:06:53 AM (GMT-6)

Posted 4/22/2017 5:05 PM (GMT 0)
Laura - when was the last taper? How long has she been on the 1/16?

I agree with the statement about antidepressants.

(No wonder my father went through hell for years - pulled off his antidepressant while going through ativan and sleeping pill (zopiclone) hell)


Laura - I hope you are all able to get sleep...is your sister sleeping a good amount of time?
Posted 4/22/2017 7:15 PM (GMT 0)
Girlie--

You father's story is all anyone needs to know, as far as how completely incompetent and dangerous these doctors are. They claim to be experts on withdrawal, but they know nothing (other than Big Pharma lies). And for my sister, these morons told us, "oh that 1/16 of Ativan is nothing--she can just stop"--so they completely don't even get that if she cannot even cope with this level of reduction, how is she going to cope with nothing? At 1/16 she's severely depressed and terrified, but if we dropped to nothing, we'd still have the depression and the terror, but she's also end up completely psychotic and in who knows how much physical pain and discomfort.

As for my sister, we've been at this level for a while now--maybe a month, but within the past two weeks, it just started to uptick. I'm thinking it's actually the anxiety that's driving her to beg us to kill her (she's honestly terrified of going to the bathroom, last weeks diarrhea accident really amped things up--she'd rather die than go to the bathroom).

We are still working on how to split the doses--it's extremely difficult b/c the pieces are so small. We cannot cut sizes we want b/c they just shatter. We have to cluster pieces according to matching size--its a huge operation (my parents and I all work on it, with a magnifying glass)

Sleep is honestly the only peace we get. We have a two day rotation of herbs and amino acids, might be more than she needs, but I only get one shot at 10pm--if she wakes up in the middle of the night, she refuses to take anything. But, even in her sleep, she's still anxious b/c I hear her in a groggy voice "please get me out of here" (I think part of her believes the house is making her sick--she doesn't understand drug withdrawal) Though her language skills and vocabulary are good, she has a lot of trouble with cause and effect.

Update- and the bathroom phobia is translating into a food phobia (she wants to avoid food/drink so she can avoid the bathroom). I have noticed a few people on benzobuddies saying the developed new phobias in the withdrawal process (agoraphobia, not being able to leave their homes) What a freaking nightmare this is and how they have been able to keep it hidden.

Post Edited (LauraJK) : 4/22/2017 1:40:31 PM (GMT-6)

Posted 4/22/2017 8:47 PM (GMT 0)
Laura, your sister has been on 1/16th dose for a month. Jumping off right now wouldn't hurt anymore than she is hurting right now, IMO. You could cut out the morning dose and wait another week and cut the last dose. Unfortunately, she will be quite ill for some time after the cut but at least she can start healing. Phenobarbitol (sp) is given to those who go to rehab to get off benzos. I am not exactly sure how that helps but maybe you can ask someone or do a research. These are my thoughts after being on benzo buddies and seeing many come off these nasty drugs.

I blame the doctors for prescribing all sorts of mind altering drugs. They will never tell you that withdrawals or tolerance is going to occur when doling them out.

My heart goes out to you and your family.

Patty
Posted 4/22/2017 9:02 PM (GMT 0)
Here are some links to info on Phenobarbital - so you can take a look:

/www.recoveryconnection.com/substance-abuse/medication-treatment-addictions-and-dual-diagnosis/medications/phenobarbital/

It says to be used no more than 2 weeks...and then gradually wean off of it.

I don't know if 2 weeks would resolve Laura's sister's ativan issues...


/www.ncbi.nlm.nih.gov/pubmed/22285834
Posted 4/22/2017 10:16 PM (GMT 0)
Thank you all. I honestly don't know what to do anymore.

I guess I'll check on benzobuddies more--we are terrified to take her off--she's already unmanageable now. We were thinking that if we keep slowly getting smaller and smaller it would be easier on her system. We are doing this alone--if we lose control and can no longer manage her, then we are in major danger. If we go to the hospital again, I think that will finish her off--the will just override us and put her on anti-depressants or anti-psychotics and we'll never get her off these poisons.

I'm seriously terrified. She's unmanageable now from 4-10. I think the only thing that brings back some calm is the evening dose. If we just stopped that, I can't even imagine the level of hell she would experience--its' already beyond her ability to cope. Well, I'll just have to research this more.

From a quick look, that phenobarbital scares me--everything scares me now. We want this to be as gentle as possible on her.

Summer-right now we are still on a nightly dose only. We were thinking that her extreme anxiety 4-10 was due to interdose withdrawal, and we were going to try to split the dose, but it's extremely hard to do. We've been working on it for a couple of hours and we can't get it right.

I honestly don't think we are going to make it. I feel like I'm going to have a heart attack or something
Posted 4/22/2017 10:56 PM (GMT 0)
Laura - did you ever look at the Ashton manuals?

I can't remember - but that was what I was looking at for my father.
Or is that what the Benzo Buddies talk about?

Sorry if this is just more of the same - it's been awhile since I was going through this and can't quite remember all of what you've looked into..
Posted 4/22/2017 11:02 PM (GMT 0)
Part of the problem is youre not able to do small enough dose changes because the pills are so tiny.

Is the water titration method not feasible?

Will a tablet dissolve in water easily?

That way you could measure out precisely her dose and changes would be more gradual.
Posted 4/22/2017 11:05 PM (GMT 0)
Girlie- thanks, yes aware of that, but there's no doctor working with us. LLMD abandoned us. everyone else we called said go back to prescribing doctor. Called benzo wise doctor up in north NJ and he's not doing it anymore. Not sure if we could rope our PCP into helping us. She was willing to give my sister Vistaril w/out seeing her, but not sure if she would be willing to get more involved. Working on consult w/Dr Sherry Rogers, but must do/send paperwork first before appointment scheduled.

Nothing calms her. We have to keep trying to split the dose properly. Vistaril plus herbs didn't calm her. Some on the benzobuddies site are saying supplements, vitamins, herbs can make withdrawal worse. My head is spinning--so many conflicting points of view.
Posted 4/22/2017 11:48 PM (GMT 0)
Well, manage to get two sets of split doses, so one for tonight into tomorrow, then one for the next night and day. If this doesn't help, I don't know what else to do,

I honestly don't know what happened. For the longest time, we had a set routine, she would amp up 2-6pm, definitely calm by 6:30, we'd start working on the OJ, finish by 7:30, next water 8-9, then water 9-10.

Now it's just extreme anxiety/terror/depression. Nothing calms her down. She wants us to take her out and kill her. I think she's terrified of evenings here in our house b/c that's when she goes to the bathroom. (she was high functioning Down Syndrome until these drugs).

My mother and I have been sobbing all day. We want to get in-home assistance, but are afraid if my sister is too out of control, they will think we are doing something wrong and call authorities on us and have her taken away. We are so scared, all we tried to do was help her get better, we made one mistake of trusting a doctor and now we are deeper in hell than we ever thought possible.
Posted 4/22/2017 11:59 PM (GMT 0)
How much, if any, is your sister aware that she was getting some kind of pill to calm her down? Does she see anyone prepping it? I'm pretty positive you're going to say she has no idea, I just want to ask.
Posted 4/23/2017 12:15 AM (GMT 0)
She doesn't understand at all. We have tried to tell her about the bad drug the doctor gave her, how it affected her brain, causes the depression, scared feelings, angry feelings. But we don't hint to her that we are still giving it to her now--I think that concept would be too hard for her (that there is this bad pill making you feel horrible, but we still have to give it to you). We were also afraid if we told her about it and brought her attention to it, what would we do if she refused to take it? But she is aware that we try to give her lots of other calming stuff.

Well, split doses is the last hope. I honestly don't know how we suddenly lost control and lost our calm evenings. Otherwise, we'll probably have to increase the dose slightly--this level is just too low and causing too much terror/anxiety.

We're trying not to panic or give up. Seems like going up dose slightly is still better than ending up on anti-depressants or anti-psychotics or who knows what else they'd try to give her.

And I think this desperation at night (wanting to go outside and have us kill her) might be due to being terrified of going to the bathroom (she had sudden diarrhea last Sunday and it terrified her--seems like everything now is about avoiding the bathroom). If the double dose doesn't settle things in the 4-10 slot, then I think it's a phobia. She calmed down at the hospital on vistaril and didn't have this 4-10 extreme emotion (thank God--otherwise they would have seriously drugged her) and maybe it was simply b/c she was out of this feared location (our house where she gets diarrhea--she honestly has trouble w/cause and effect and has said things about "this house makes me sick")

And thank you to everyone here. I can't tell you how much I appreciate all of your support and suggestions.

Post Edited (LauraJK) : 4/22/2017 6:25:31 PM (GMT-6)

Posted 4/23/2017 12:21 AM (GMT 0)

LauraJK said...
She doesn't understand at all. We have tried to tell her about the bad drug the doctor gave her, how it affected her brain, causes the depression, scared feelings, angry feelings. But we don't hint to her that we are still giving it to her now--I think that concept would be too hard for her (that there is this bad pill making you feel horrible, but we still have to give it to you). We were also afraid if we told her about it and brought her attention to it, what would we do if she refused to take it? But she is aware that we try to give her lots of other calming stuff.

Well, split doses is the last hope. I honestly don't know how we suddenly lost control and lost our calm evenings. Otherwise, we'll probably have to increase the dose slightly--this level is just too low and causing too much terror/anxiety.

We're trying not to panic or give up. Seems like going up dose slightly is still better than ending up on anti-depressants or anti-psychotics or who knows what else they'd try to give her.

Laura - I wanted to suggest going up a tad in the dose - but didn't know if you would want to do that.
Honestly - you need a break...and so does she.

What about the water titration when you do start lowering again? (I don't know if you saw my previous post)
wouldn't that be easier than trying to split those tiny pieces? If you dissolved the pill in 1 cup of water...and then when wanting to wean off...you could give her 3/4 cup of the water...instead of jumping down to half a pill?
So she would get 3/4 of the dose.
Or does it have a bitter taste..I wonder.
Posted 4/23/2017 12:29 AM (GMT 0)
yes Girlie, that's what we've concluded as well. this is clearly too much for her

Thanks for mentioning the water titration. I'm nervous about that, but will look into it more. We've been trying to be as accurate as we can.

It's just really hard, my parents are elderly and it all falls on me to figure things out. I tried to put my father in charge of the titration info, but I'm nervous about his cognitive abilities at his age.

I did see someone on the BB forum today talking about watching youtubes on how to do the water titration, maybe that will help me--we're just so scared about messing the dose up.

But, yes, we think we have to updose slightly---this is just too much for her. And it came out of nowhere--honestly, we had our evening routine locked in for months. It started w/discomfort sitting/lying down and then suddenly exploded on us
Posted 4/23/2017 12:42 AM (GMT 0)
I'm thinking that it may be more accurate with the water titration than splitting up those tiny pills that crumble.

Will she drink a glass of water?

Maybe you can put it in juice?
Posted 4/23/2017 12:43 AM (GMT 0)
I found this:

www.benzos.une.edu/documents/1Water_Titration_Instructions_and_Tools.pdf


Also read in the next one that not all drugs are water soluble...do you know if the ativan mixes and dissolves in water?

/beyondmeds.com/2008/05/14/water-titration-for-slow-and-controlled-psychiatric-drug-withdrawal/
Posted 4/23/2017 1:30 AM (GMT 0)
Girlie --thanks so much for the titration info. just found a post on it over at BB forum, will read up tomorrow and see it we can do it that way
well, for months and months we were getting water/juice in, but now we are having trouble again--she's resisting again
Posted 4/23/2017 7:54 AM (GMT 0)
Laura why don't you put your sister in a addiction benzo recovery program. It's an outpatient program and the doctors are very careful to help everyone get off of the benzos slowly with as little symptoms as possible and they teach you skills so that you learn how to cope with the symptoms. They also often give medication to make ur body not crave the benzo that is non addictive, and they make sure to not give the patients addictive medications as the goal is to get the patients no longer dependent on drugs.
Posted 4/23/2017 12:58 PM (GMT 0)
Jenny-thanks for the suggestion, we'll see what's around.


Girlie- Was just on the BB forum, water titration section, and apparently Ativan is not water soluble (I swear, every step of the way, things never work for us)

Read your link on titration and found this helpful:
"One rule of thumb is to allow at least ten weeks to go off the last 10% of your starting dose, 1% per week. Slowing down at the end is a good way to prevent protracted withdrawal symptoms from occurring after you are off the drug. Oftentimes those who taper by making larger cuts find that their worst suffers occurs after they reach zero, when the accumulated half-lives of the drug leaves their system in the following weeks. By slowing your taper to a crawl at the end you have a good chance of avoiding this danger." (this is what we were planning to do--at the end 2 months on smallest crumb, as transition before jump)

Also, did split dose last night, was still able to sleep, woke up w/usual "I can't sit, get me outa here, open the door" but w/in 10 min she sat down.

Sorry if TMI, I'm really thinking that the ramping up has to do w/a phobia of going to the bathroom (she had a diarrhea accident last Sun night-which is her biggest fear). I've seen other people on the BB forum develop new phobias (like leaving the home), and they can avoid their phobia, but my sister can't avoid this one. We had this back when we first started w/d, every am, she'd wake up shouting get me outa here, desperate to get out before 9, b/c that's when her body would go to the bathroom. Eventually, that fear went away and worked itself out. That's kind of what we are hoping for. Hopefully, giving the next 1/2 dose at 2pm will help take the edge off the terror.


Also, Girlie, thanks for the link to beyondmeds site--I'm finding lots of good info there. Feeling better about our slow taper approach. Reading lots saying it's different for each individual, and you have to do what's best for you and your ability to cope,

Just started watching some YTs w/Dr. Peter Bregin--very helpful. I'm feeling more hopeful. I think we can do this. we just have to go at a pace she can handle

Update: watching more YTs on benzos, very validating, one called "The Many Faces of Benzo Withdrawal"--so many people w/similar experiences, including the maddening stance of doctors, not helping, telling you there is no withdrawal, etc

Post Edited (LauraJK) : 4/23/2017 9:17:31 AM (GMT-6)

Posted 4/23/2017 4:39 PM (GMT 0)
Laura - I really hope this works for her this afternoon.... i am hopeful it will.


The good thing is she is with you...we never had the control with my father.
We learned when he was in the hospital that the nurses have ativan behind the counter...and were slipping my father one every now and then....Apparently this is allowed. (RIDICULOUS)
So, just sabotaging any work we were doing to get him off them.

Then it happened in the nursing home as well...

We just couldn't do anything because he wasn't living with us. You do have that in your favor.
Posted 4/23/2017 4:54 PM (GMT 0)
Page 3 is getting lengthy, so have created a Part 4 - Please do not post on this thread anymore. The link to part 4 is below:


Here is the link to it:

www.healingwell.com/community/default.aspx?f=30&m=3835616
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