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LauraJK - Sister has lost will to live, part 4

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Posted 4/23/2017 4:52 PM (GMT 0)
Part 1,Page1 www.healingwell.com/community/default.aspx?f=30&m=3646996

Part 2, Page 1 www.healingwell.com/community/default.aspx?f=30&m=3710093

Part 3, Page 1 www.healingwell.com/community/default.aspx?f=30&m=3833855
Posted 4/23/2017 4:56 PM (GMT 0)
Last two posts in Part 3:

LAURA'S SISTER POSTED:


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


GIRLIE posted:

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 6:24 PM (GMT 0)
thank you so much Girlie. I've been watching lots of YTs this morning--its helped to hear from others going through this. And everyone seems to have the same take--stay away from the doctors, they just don't get it.

Yes, keeping her with us is the only way we have control. We just have to slow down and go according to her own pace- and of course it's going to be harder on her and take longer b/c she is MR and just doesn't have the same coping skills.

So sorry again about your father--makes sense though, the philosophy there is just to drug problems away.
Posted 4/25/2017 6:30 PM (GMT 0)
Ugh, just need to vent.

After months and month of getting a set amount of food and water in, my sister is back to food/water refusal/resistance.

Pretty sure this is all b/c of a bathroom phobia (brought on by diarrhea emergency on Easter night). Ever since then, it's been increasingly difficult. She figures if she doesn't eat/drink, she wont' have to go to the bathroom.

Really difficult time for this new problem to pop up, as we've been working hard to see it this split dose schedule can calm things.

We somehow got a minimum amount in yesterday (with extreme struggle), but today she's out outright refusing, so we can't even get the 2nd 1/2 dose of Ativan in.
Posted 4/25/2017 6:36 PM (GMT 0)
She won't take the ativan if you tell her she will feel better with it?


When she refuses to eat...does she not eventually get really hungry and will give in to the hunger?


Sorry for all you're going through!!!
Posted 4/25/2017 6:37 PM (GMT 0)
Frustrating, frightening situation and I am so sorry for all of you....her fears, your fears.

I think you've said she hates shots too, so getting her B12 shots is probably out too. It gives a feeling of well being, and increases the appetite.
Posted 4/25/2017 9:46 PM (GMT 0)
Ugh, well, we managed to get it in, finally.

Thanks for the support. We're just trying to take this day by day.

Honestly, a number of people on the benzo forum developed agoraphobia, which is easy to avoid (just don't leave the house)--if we had that, we wouldn't have a problem.

But instead, it's like she's developed a phobia of being in our house at night, b/c she's afraid of a diarrhea incident, and she thinks no food/drink we help avoid going to the bathroom. It's so incredibly frustrating. And there's no reasoning with her--her language skills are good, but she's always had major problems with cause and effect (if two things happen at the same time, she thinks one must have caused the other--no concept of coincidence)

We're just hoping that this somehow settles down after a week or so with the split dose and going up a bit.

I just hope everyone reading my posts learns from our mistakes and stays away from benzos.

I still can't believe this stuff is legal and cannabis isn't--talk about a backwards world

Thanks again for all the support.



Also, fwiw, for her Lyme, we seemed to have good results from Jernigan's Borrelogen and CNS/PNS detox drops (we're obviously stopping now until things settle). All we have left is the tinnitus (which is quieter b/c she takes the headphones off and just leaves them around her neck in the evening), and sensory sensitivity. So, anyway, just wanted to let people know that we found that to be a helpful option.


And thanks for the tip about b12--we actually hydrox b12 that she likes to suck on. I'll make sure to give her more of those.

Post Edited (LauraJK) : 4/25/2017 4:19:43 PM (GMT-6)

Posted 4/26/2017 1:14 AM (GMT 0)
I'm hoping things settle down for you all...if you can get some calming with the split dosing of the ativan.


Keep us posted!
Posted 6/12/2017 12:59 PM (GMT 0)
Hi-
Wish I had something positive to say, but unfortunately things are absolutely horrible.

We tried the split dose for a week and it did absolutely nothing to change the extreme emotional upset from 4-10. We're still not completely clear about what comes over her, but something definitely happens, and she's extremely uncomfortable sitting and just wants to die asap.

After lots of searching on the benzobuddies forum, I finally found someone post on symptoms like my sister has--this person seemed to think it was some sort of cortisol or adrenaline surge related to dysregulation of the HPA axis due to the benzo w/d. So this is what we kind of think it is. For months we had this daily upset from 2-6pm, and then it switched from 4-9:30.

We tried the Motherwort and Passion flower and neither made a difference. Same for everything else we have tried. It just seems like this drug is so powerful that nothing seems to help with any of her symptoms (severe depression, anxiety, and pain). We even tried CBD oil, which is supposed to help, but so far no change.

I finally found my way around that benzobuddies forum, and have seen so many horror stories. I have absolutely no faith in any of these so-called doctors. There are so many cases over there of lives ruined and brains damaged b/c these so-called doctors don't have any clue what they are doing when it comes to benzos.

We're terrified right now that we might never get my sister back. The suffering involved in trying to get her off of this poison is honestly more than she can cope with. After reading so many horror stories on the benzobuddies forum, it seems like the people who stayed away from additional drugs are the ones who tend to have more successful outcomes. So, we are clear that we can't give her any additional psychotropic poisons and that we just have to do this on our own.

Right now, it's a daily battle to get her through the day. We are stuck at 1/16 of the .5 pill. And we have been at this level since mid-March. This is the first time we haven't had a settling--there is no way to go further in the taper until things settle. It's already too much for her. And I have found a number of other people who are tapering to the last crumb, just like we intend to do, for the same reasons: so the transition off the poison is not as big of a shock to the CNS, and so it's not so torturous. I've seen many stories over there of people jumping and then not being able to handle the post-jump state and they end up back on more poison and these are the people who seem to have the worst outcomes.

Not sure if I posted this anywhere else, but I'm convinced that my sister just has especially vulnerable genetics when it comes to these psychotropic poisons. With Trazodone, we're convinced that she's a cyp 2D6 poor metabolizer and that's why she had such an adverse reaction (she was on a low dose and within 2-3 months she was suicidally depressed). And she's probably a rapid metabolizer of whatever is involved with Xanax b/c that didn't have much of any impact on her when we tried it prior to blood work. Same for Valium- back in early July 2016 (when my sister was having extreme panic attacks due to Trazodone, though at the time we didn't realize the drug was doing it), we gave her 1/2 a Valium (we had on hand for future bloodwork that we never got done), it made her sleepy for a few hours, but when we tried the same dose the following week, it did absolutely nothing for her--like we gave her water. Unfortunately, we learned to late that you can get testing done on this http://genomemag.com/whats-your-metabolizer-rate/#.WT6N-Ny1vcs

So, that's where we are: struggling to survive each day and not sure we will ever get her out of this. I just hope others can learn from our mistake. That LLMD destroyed our lives--we trusted her and now our lives our ruined and my sister is going through daily emotional and physical torture, with no end in sight.
Posted 6/12/2017 2:18 PM (GMT 0)
I simply can't express enough sorrow for your situation, LauraJK. I'm so very sorry for all of this.

Would it be possible to get a saliva sample from her 4 times in one day? This would be to test her adrenals, as I was thinking of the same possibility with the times that your sister is struggling the most.

If you need to order the test yourself, here is one of several sites (I assume) that will do the testing without a doctor's order: www.truehealthlabs.com/Salivary-Adrenal-Fatigue-Stress-Test-STTM-p/dt_sttm_4cort-dhea_flexm.htm

If her adrenals are too low, or too high, getting them balanced out may be a lot of help.

As always, I wish your whole family a break, and the best possible outcome to come soon. I just wish I knew how to help more.
Posted 6/12/2017 3:21 PM (GMT 0)
Trav-

Thanks for the support. Honestly, at this point, my sister is no longer cooperative with anything (she was completely compliant and cooperative until the psychotropic poisons), so there's no way I can get her to spit to get those samples. We're just going to assume it's adrenaline or cortisol and try to give her some natural remedies and see if anything helps. We have something called Relora that we are trying (so far no difference).

We have also heard about Phosphatidyl Serine being helpful for cortisol, but we haven't tried that yet b/c we are kind of nervous--we actually gave it to her last fall, when we were in the aftermath of the CT from Traz and either on Ativan or starting the taper. At any rate, we gave it to her (Jarrow PS100) for calming, but it had the opposite effect. We are hoping now that her brain is in a different place and might be able to handle it (but a different brand), We'll probably try it at some point this week.

We're honestly not very hopeful anymore. Nothing seems to give her any relief and the symptoms of w/d are just more torturous than she can bear.
Posted 6/12/2017 3:33 PM (GMT 0)
Phosolipid Serine lowers cortisol: www.healingwell.com/community/default.aspx?f=30&m=3860421 So if she is already too low, it will not work, but if it's too high during that time, it may be of help.

Because of her previous health issues, I'm not sure how that may change how she metabolizes these things, so I'm very reluctant to give suggestions - but.....
If the phospholipid serine does the opposite of what you need, then you may wish to try something like ashwagandha, as it has a more balancing action to it, rather than strictly lowering the cortisol. Something else for you to read up on! Sorry!
Posted 6/12/2017 5:41 PM (GMT 0)
LauraJK - I don't remember where your at with your sister's Ativan dosage.

But - did you try raising it back up to the previous dose or part way back up?
I know that you don't want to go in that direction...but I've read that sometimes that is the only way to get some relief...and then after a week or so....shave a smaller amount off?

I have read that it is necessary sometimes...if the tapering isn't working..
Posted 6/12/2017 6:28 PM (GMT 0)
Trav-thanks for the suggestions. we'll look into Ashwagandha too


Girlie- We're at 1/16 of the.5 pill, so we're really close to getting her off. We just can't taper any further until things settle down. This is just too torturous as it is--she's always telling us how she can't do this anymore. We are now literally struggling to get her through the day.

As for raising the dose, we just don't want to do that- first b/c from reading over there on benzobuddies, there is no guarantee that that will work. In fact, I've seen plenty instances over there when people updose and get no relief, but now they have messed themselves up with the taper. The other reason we can't updose is b/c we are going to run out of pills. We don't have anyone helping us, so all we have right now are the pills from the LLMD--she prescribed the poison for my sister to take 4x per day, which is why we have some left. But it we have to hold much longer, we could run out.

Thanks again for the suggestions. I appreciate the support. It's just a horrible situation, and we don't seem to have any way out other than continuing to suffer through each day.
Posted 6/12/2017 6:47 PM (GMT 0)
Oh, you are very close...

Will the LLMD give you some more pills - if you explain that you need them to taper her off?
Posted 6/13/2017 12:50 PM (GMT 0)
Thanks Girlie. Well, if we actually survive long enough to where we are about to run out of pills, we'll have to figure that out. But, honestly, right now, I just don't see us even getting that far. She is so tortured and miserable now. It's all day. She has a horrible sitting problem, so she can't get comfortable. And there's nothing we can do to get her any relief. This w/d is just too horrific for someone MR. And actually, it looks like it's too horrific for some people with normal IQs, as I've seen a number of people over at the forum just give up and reinstate. But that is not an option for us b/c this Ativan poison made her even more suicidally depressed than she already was on Trazodone.
Posted 6/13/2017 1:39 PM (GMT 0)
Just wanted to say I'm so sorry. This sounds like a living nightmare. I am praying for healing, strength, wisdom, and peace for your sister and your family. Thoughts are with you. Big Hug.
Posted 6/13/2017 2:39 PM (GMT 0)
TrialbyLyme- Thanks for the sympathy. Yes, it's a living nightmare. I just don't see any way out of this. She tells us everyday that she can't take it anymore.
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