Sister has lost will to live, resisting food and drink

I just wanted to give an update on the situation with my sister. Unfortunately, we have descended into a deeper level of hell.

The quick story is that we are now convinced that my sister becoming suicidally depressed and refusing food and drink was due to the Trazodone she was taking for sleep (details below). We forgot it was an antidepressant, and didn't see the warning about watching for emotional and behavioral changes.

Anyway, it became clear to us early Aug that the she was having major problem with the drug. The tip off was severe (as in completely watery) diarrhea. At that point, she was only on Buhner herbs, so we knew it wasn't that. Anyway, my mother took out that insert for Trazodone and saw that diarrhea was a potential side effect. Given the severity of the diarrhea, which was absolutely traumatizing for my sister, plus other scary side effects, we knew we had to get off asap (we were terrified). We knew that it going off cold-turkey was not recommended b/c of longer more severe withdrawal, but we didn't know what else to do. So my sister has been going through hell from getting off of that drug (more nightmare stories about getting off of that horrible drug are here: http://mentalhealthdaily.com/2014/07/21/trazodone-withdrawal-symptoms-duration/)

The next problem in going off Traz was that my sister couldn't sleep and was resisting sleep (which was making her physically sicker). The LLMD gave us a prescription for Ativan (another HUGE mistake--but we didn't know what to do and were desperate...we were afraid we were going to have to put her in the hospital). The Ativan worked perfectly for bedtime (and thank God we only did it then, as opposed to every 6 hours, which is what it was written for), and at first we didn't see any problem with it. But now, we are convinced that it has deepened her depression and we have to get her off of it. We are doing a gradual tapering and started on Sun with a 1/4 reduction in dose, which we have to stay with for 2 weeks. Getting off of this drug is also hellish (http://mentalhealthdaily.com/2014/06/17/ativan-lorazepam-withdrawal-symptoms-duration/).

I can't believe what a horrible mistake it was for us to turn to these psychotropic drugs--my sister is destroyed. Prior to the drugs, she was still there--her personality was intact, she was coping really well despite the horrible nature of her Lyme symptoms. But once we added the drugs, things went downhill--it's so clear now that we look back. Right now, we barely see her. Most of the day she spends crying, moaning, groaning, and sometimes shouting at us "kill me," "get rid of me," "let me die." I've never been so terrified in my life. We only get to see my sister for a couple of hours at night before bed--she's much calmer (though that may change as we continue going through hell to get off of these drugs), and her normal personality is there--she's more talkative and more like her normal self. So we know she's still in there. I just hope and pray that she has the strength to get through this never-ending nightmare.

Right now, Lyme is on the backburner--we just try to get 2 of the 3 juices with drops (so 2/3 of regular dose), and the detox waters. It seems like we kind of have the Lyme symptoms under control with supplements to sop up the ammonia. But we still have to struggle with food and drink b/c she still wants to die. I've never been so scared in my life.

We are trying so hard to keep her with us, but if she gets too dehydrated then we might have to put her into the hospital--which we are trying to avoid at all costs. We're sure that if we put her in the hospital, that will be the end of my sister--they will just say she's crazy and put more drugs into her and we'll never get her back.

I'm so scared we aren't going to get out of this. My parents are in their upper 70s and not in good health. A couple of weeks ago, my mother was having spikes in her BP and got scared and went to the urgent care center, where they almost accidently killed her. Every day is living hell for us and my sister. For the past two days, I have been crying constantly b/c it's so painful to watch my sister suffer like this. And we all feel so guilty for giving her these drugs.

Hi Girlie
Thanks. Yeah, I think we need to go slower--probably down 1/8 every two weeks. Since we already started--almost a full week in, I'm not sure what we should do, as in do we add an 1/8 back in and go backward, or stick w/down by 1/4 for one more week, and then from then on go down 1/8 every two weeks. Believe me, this is all we talk and cry about. The problem is that I think she actually goes into withdrawal every day just from the dose the night before--her depression is so bad, plus there's lots of anxiety, agitation, and aggression.

Thanks for your thoughts. Now she's starting to get stomach aches. I'm terrified there are going to be GI side effects from the withdrawal of Ativan. We already went through that w/Trazodone and finally got her gut healed (no more diarrhea). I think if she starts getting GI problems, that will be the end for us--I really don't know how much more she can take. I'll never forgive myself for this.

Girlie- Thanks for your thoughts. I'll pass along everything you said to my parents. I've never been so terrified in my life.

We are desperate for help and guidance, but we no longer trust doctors--we would have been better off if we never went to a doctor. Nevertheless, my mother called the local chapter of ARC to see if anyone could help us--apparently they have doctors who specialize in working with people with Down Syndrome. On Mon, my parents also have an appointment w/the LLMD who prescribed it (the appointment is actually for my father, who thinks he may have Lyme), so they will ask her what to do and how to get off. The last thing we want are more psychotropic meds.

We're also going to try to do more research to see if there is anyone around here who specializes in this sort of thing (getting off psychotropic drugs). We just don't know what's going on and what to expect.

Honestly, things are so bad that my mother and I have talked about a triple suicide. If we just stayed away from doctors, we would be fine right now, focused on killing Lyme instead of going through emotional hell. I honestly dread the start of everyday and just watch the clock for how many hours we have to get through.

Also, fwiw, she's been on .5 mg at night before bed for about 6 weeks. And during that time we weren't constantly on 1 whole pill. There were a couple of times we went down to 3/4 for a few days and then back up. Honestly, I'll never forgive myself for this nightmare. Watching her in so much emotional pain is unbearable.

Post Edited (LauraJK) : 9/24/2016 3:17:42 PM (GMT-6)

Thanks Girlie. We're just so terrified and we feel helpless. I was hopeful at first b/c we had an extended period of calm on Mon (5pm-10pm) and thought we were going in the right direction, but for the rest of the week, we've only had about 2 or 3 hours at the end of the day, before we start hell all over again in giving her the next dose of Ativan. And I'm actually a clinical psychologist (not working now b/c I'm sick myself) and at this point talking won't help us--the support I get here on this forum is more helpful than anyone outside of Lyme world could ever be. (Plus, I'm on duty 24/7 and my mother only has time to run out and get groceries for us).

We can't even get her out of the house to a doctor--she just refuses to get in the car. Any help from a doctor is going to have to be via consult.

Right now, though, we are struggling to get juice and water in her (it hasn't always been that way--for a while I was able to get 2 big juices and 5 waters in). Today, she has only had one juice and one water. If we aren't able to get enough liquid in, then she's probably collapse at some point and we will have to call an ambulance. I just think that will be the end for her--they will just dope her up and we'll never get her back. We sometimes attempt to take her headphones away (she listens to music all day for her left ear), in order to get liquids/food in her, but I'm so tired of doing that to her--it seems so cruel. I honestly don't know what we're going to do. Right now we just take one day at a time and try to get to the next day.

I'll probably start a new thread with withdrawal from Ativan as the topic, just in case, people haven't seen this thread

When my father was dependent on the Ativan, I read about Dr. Ashton's benzo weaning schedule.
It was six years ago...so I can't remember a lot about it...but it involved gradual weaning and substituting Valium temporarily...and then weaning off that.
The reason being Valium is easier to wean off.
My father was taking Ativan 4x daily and was going through withdrawals between doses.
The problem with it is you need someone to prescribe the Valium and explain your plan.

I don't know how successful this way is...but I know at the time it made sense to me. But I never had the chance to even try it.

It sounds kind of crazy, but maybe search the Internet and see what you find on successful weaning off benzos.

Girlie- Thank you so much--I'll definitely look into that. I've never been so scared in my life. I hope we didn't make a mistake by only giving it to my sister at night instead of all day. The prescription was for .5, 4x per day, but we were so scared of doing that much that we decided to give it to her at night. Now, I'm pretty sure I read in that site I linked to above and elsewhere that other people also just took it at night. But maybe that's why mornings are so horrific--it's worst then, maybe a little better later in the after noon, and usually a couple hours of calm at night prior to the next dose--we were kind of interpreting that as some kind of daily withdrawal that she goes through and then feels better the further away time-wise that she gets from her last dose (but that's just guess work).

I'll definitely look into that link above. We actually have some valium on hand all ready. We used it during the later part June/early July, when we were living in the car and transitioned into the house and she was having panic attacks (now we know due to the Traz). She quickly adapted to it, so it didn't work for her. But we'll definitely look into it b/c we are desperate.

Girlie- Thank you so much for your help--you've honestly given me a bit of hope. We are still terrified, but that site makes me feel like this can be done. I think we have to find someone, like a psychiatrist, to help us. But at the same time, I have to admit, we are now absolutely TERRIFIED of doctors--if we stayed away from them, we would be doing fine right now and working on Lyme, instead of trying to claw our way out of drug-induced emotional disturbance.

Okay, everything you mentioned about a morning dose and an evening dose makes sense--but we have to think everything through before we do it (we've already made too many mistakes). Right now we have been doing 3/4 at night since Sunday (six nights) and we were planning on doing that for the next week. But maybe we can just half that and do it two times a day. We'll definitely think about it.

We're just trying to figure out what's happening. Tonight we haven't gotten the calming that we usually get--she's extremely agitated and anxious. Going off the Trazodone cold-turkey obviously complicates things--it was a mistake, but we were so scared of what was happening to her (she was having seizures and panic attacks, in addition to the watery diarrhea). It looks like I have to do a lot of research the rest of the weekend on how to withdraw from benzos--I'll have to get on other forums.

Thanks again for your help. You've really given me some hope. But we have to get on this asap.

I hope your father was able to eventually get off of the Ativan. I can't believe he was given so much. It seems these doctors just give the stuff out like candy, without any warnings on what a hellish nightmare you will face if you ever try to get off.

Finding a forum is a good idea.

If you get a Dr. to help - make sure he/she understands how to wean someone slowly.

A geriatric psychiatrist did not accept my father was dependent on the Ativan after 6 weeks of use...unfortunately. We knew he was - he was looking for more of the pills in between his 4 x daily doses.
He also got very agitated.
He ended up in a Psych ward and was cold turkeyed - off the Ativan and the antidepressant he had been on for over 20 years (well actually a 3 day weaning off the antidepressant) and was put on antipsychotic medications and diagnosed with manic depressive (he went into Psychosis after the Meds were removed)
Yup, at 75 years old he now had manic depression. (Insert sarcasm)

I'm telling you this so you are careful with who you choose to help your sister. I wish I had never allowed him to go go to the Psych ward and had tried to help him at his home.

Your sister is on a low dose so it shouldn't be as difficult to wean her off I'm thinking.

I think substituting Valium for Ativan is usually for people who are on higher doses...so you may not need to switch.
If you need to go lower than what's practical to split the pill, there is a method using water to dilute...may be complicated though.

Looks like Lymemother and I were posting at the same time.

Thanks, LymeMother for your suggestions.

Honey please try this!!! Its a trick that many people say works its just a minute long and free to do maybe it will help!!!
https://m.reddit.com/r/bestof/comments/3l54rd/reddituser_amazes_with_cure_for_tinnitus/?ref=share&ref_source=link

LauraJK said...
Thanks so much Girlie and LymeMother for your responses--I can't tell you how much I appreciate the sympathy, support and suggestions.

I only have a few minutes now, but will write more tomorrow.

Girlie- On your advice about doing a morning dose in addition to an evening dose, right now, my mother and I are thinking about doing one of three things (I'm going to have to get up early and research this more)

1. We try 1/2 of the .5 pill (.25), and then stick with the 3/4 in the evening that she is used to. (but then, I guess there is the worry about the doses being equal)

2. Or we try 1/2 of her evening dose (which has been 3/4 of the .5 pill, so I guess .375), and then the same in the evening. But my worry here is that she has been used to the 3/4 in the evening for the past week (and the whole pill for 5-6 weeks)--I'm a little nervous about the switch down by 1/2.

3. Or we try 3/4 in the morning and 3/4 in the evening. But here we are worried about adding an increased overall dose of 3/4, which will bring us up to 1 1/2 pills (total of .75 instead of .5 where we started originally). It does make me nervous to up the overall dose.

And my thinking is that after next week, we taper down by just 1/8 and stay there for two or more weeks.

Also, I'm thinking that we are going to have to take a break from fighting Lyme, since the tinctures are based in alcohol. I was already nervous about it, but now even more so. Maybe we can switch to Hansa center's Borrelogen b/c I think they sell a version based in ACV.

And Girlie- thanks for sharing what happened with your father--what a horrible nightmare for all of you to have gone through. We certainly intend to be careful about who we get to help us. We are hoping that maybe if we get the twice a day dose worked out that maybe things will be easier. My parents will run our plan by the LLMD on Mon. I'm assuming that my sister wont get as locked into the morning dose, since it will be new.

I really don't know what way is best.
I don't think #3 is good....as you say - increasing the overall dose to more than what she started with.
I'm thinking #1 might be best. Even though it's not the same dose as the evening - it should still be better than what she's doing now...because she's got nothing in the morning....and probably feeling that. Although, it is still upping her dose to 1 1/4 pills (so 1/4 pill higher than originally)
(If I'm doing the math right)

You should keep her at the 'new' dose for minimum 2 weeks...maybe even 3-4 weeks before dropping it again.

I think going on a forum and asking others who have been through the weaning process is a good idea.

How long was she on the Trazadone? There's the withdrawal from that as well....so going slowly with the reduction of ativan is important....

Hi Laura,

Please hang in there! There is hope for your sister and I really believe if anyone can help your sister it is the Hansa Center. Believe me I wouldn't recommend this as I first recommend following Dr. Jernigan's Healing at Home protocol from his book like I did. But your sister is a very complicated case and needs someone who is specialized in helping her. They do take Care Credit if money is an issue.

Dr. Jernigan doesn't look at lyme alone, he looks at the entire picture. 2 weeks there may be the biggest blessing in the world for your sister and he would instruct you and your Mom how to continue to help her. You really need someone who thinks "outside" the box.

I have been around the lyme world for many, many years and have seen it all: the good, the bad, and the ugly.

Read below:

davidjernigan.blogspot.com/2016/03/are-your-treatments-not-working-we-want.html

You are have nothing to lose by contacting them.

Big hugs to your and your family,
Denise