LauraJK - Sister has lost will to live, part 3

Laura I have no experience with what you are going through so not much to say other than remember you are and have been doing the best you can and the best you know how at the time.

Prayers for all of you and for moments of precious peace in your home.

Thanks to all for your support. She's really amped up right now, so I'll just respond as I have time.

Girlie- yes, I also heard Ativan is one of the worst to get off of from the social worker at the hospital (the only one who listened and acknowledged it's the withdrawal).

Yes, we are seriously considering all options at this point--probably will try split dose tonight or tomorrow (we just want to think everything through carefully and right now we are in panic mode and can't think clearly). We are still trying to find someone to help us--maybe we will try going over other options w/our PCP who gave us the Vistaril--Since she knew my sister for years before this nightmare, she knows darn well that my sister was an emotionally healthy, high functioning person with Down Syndrome, so she's not going to buy what the others are trying to push (that my sister's emotional condition has nothing to do w/the Trazodone followed by Ativan)

We would consider the crossover w/Valium, but my sister has a history of a strange reaction to that one. Prior to getting on Ativan, during our Trazodone days (when we still hadn't realized the Trazodone was causing a problem), when my sister was having panic attacks, we used valium, isolated doses, maybe a week apart. First time it had an effect, second time nothing--which made us scared, b/c that seemed to suggest she was quickly developing tolerance after one dose, and needing more by the second. Sorry, if this doesn't make sense (my mind is racing).

We're trying not to lose all hope (which is really hard). We actually have 8 hours that are totally survivable/bearable. Its just the six that are suddenly very scary. We don't even know what happened. We're on the same dose, but suddenly in the past two weeks, things suddenly escalated, so quickly that there was no time to plan what to do, which is why we've been scrambling.

Grdner--thanks so much for the sympathy

july- Thank you. I've actually been trying to figure whether there are any other safe options if we need pharmaceuticals. I've been wondering about Gabapentin (father was on it). And actually the LLMD prescribed it for my sister (we had no idea why--she never explained, gave it prior to Ativan, was handing out those prescriptions recklessly like candy). Obviously, we would have to work with a doctor to explore these options--we are again thinking our best bet is to work w/out PCP who knows my sister was emotionally healthy until these drugs.

Girlie- Yes, my father took Gabapentin for neuropathy, now just for sleep, takes it hit or miss, never seems to have an effect when he stops, so it doesn't seem to have the addictive quality of some of the others. Have no idea whether it could have a calming effect, but we will explore all options--we are more willing to deal w/a big pharma med that is NOT addictive and will not have withdrawal effects---we are desperately trying to keep her from getting sucked in deeper into this system.

Benzo buddies hasn't been that helpful--I think everyone there is suffering so much, they don't have much energy for others. Plus, I think there aren't as many options. Here w/Lyme, there are lots of things you can do. Seems like with benzos, time is the only guaranteed healer and that's if your are strong enough to tolerate the symptom for months and months.

Also, years ago, my sister was diagnosed w/a seizure disorder (just a couple of small ones), we later figured out that it was possibly due to nutritional deficiency (Down syndrome has weird biochemistry common w/epileptics) or aspartame. we took her off topomax (no withdrawal, no problems all at), got rid of the aspartame and added the necessary nutrients and never had another seizure until last days on Trazodone (something clearly went wrong w/the serotonin levels). So maybe topomax could be a possibility--I think it calms the brain and she had no problem with it, no side effects and no withdrawal from cold turkey stopping

But first priority is still splitting the dose.

Honestly, we're nervous about new drugs, valium or gabapentin, if for no other reason than we have had the worst luck every step of the way and keep digging ourselves in deeper.

Thanks again to all here. I can't tell you how much your support means.

Gabapentin was prescribed for me to get through the night without going through withdrawl from Percocet.

My internist doesn't like me taking Percocet at night because it depresses my breathing and I'm already Hypoxic. I can go all day- even more than 18 hours without any Percocet. But come night time and I'm in bed I'm jumping and twitching everywhere, and all the usual symptoms of withdrawl. Over active neurotransmitters.

I personally wasn't happy with how I felt on the Gabapentin, but in all fairness, I really didn't give it much of a chance. Less than a week.

I realize that Laura's night time situation is ok, but I'm just wondering if using the Gaba early afternoon would help minimize her explosive distress.

Ativan has that 12 hour half life, and she does need something to calm her withdrawls down in between, that isn't addictive in itself.


This is going to make everyone wonder about me, but my inner hippy child is yelling "Somebody make that poor scared 'girl' some marijuana brownies!!

Post Edited (julymorning) : 4/21/2017 5:35:00 PM (GMT-6)

Cannabis works excellent for relaxing your body and handling pain.
Another herb for anxiety and relaxation is kava kava. Kava helped me sleep. Pot helps my pain and appetite.
If you go the edible route you want to start low and slow. Takes a while to kick in and she might only need a small amount for therapeutic benefits. I find 30 mg to be my sweet spot but I started with 5mg. Takes two hours to kick in. So I'd take just 5 the first night. Then 10. And so forth. Took me about a week to figure out my optimal dose.

Laura please try motherwort and pasque flower. You can order them from woodland essence and they are quite cheap! It is what buhner uses for patients who are suicidal and in crises to calm them down. It does actually work on me! My herbalist says that they both don't cause negative reactions or herxing but start with a drop of each in case your sister is sensitive. They didn't start working for me until I got to around 20-30 drops of each u can take up to ten drops of pasque flower hourly and a dropperful of motherwort hourly (it's pretty much impossible to overdose on it my herbalist said lol). If panic attacks continue my herbalist always told me personally my dose isn't high enough. I will keep praying for you guys keep chugging Laura I know in my heart your sister is gonna be okay ❤

Laura - if you're interested - here is a link to hawaiipharm - where you can order non-alcohol tinctures:

www.hawaiipharm.com/alcohol-free-liquid-herbal-extracts/[m][115]/motherwort-nonalc-extract

okay, thanks. we'll get on that asap

Well, if Hawaiian pharm has them in glycerin, that's a whole lot easier for these folks anyway.

You would think more would offer that option, but then I guess it doesn't keep as well.

Thanks girlie!!! Rhodiola and eleuthero are good for depression but esp eleuthero can be stimulating so the motherwort and pasque flower would be a better start I think!

Hi Laura. I was a member of benzo buddies for 3 years. From what I hear the site is not as supporting as when I was on there 5 years ago.

All benzos are really tough to get off for many people. The only way to do it is to slowly titrate down which you are doing. I jumped off Xanax at 1/8th of a pill. Adding in another benzo such as Valium is defeating the purpose of being free from these terrible meds. Withdrawals are horrible as you well know from your sister's experiences. It takes a tough resolve to stay focused and unfortunately you and your parents are her guiding light. Post benzo withdrawals can last a long time for some.

What is your sister's dose right now?

Patty xo