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Down Syndrome, Ativan, Side Effects, Withdrawal Nightmare


[La...]

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Hi-

 

I'm writing on behalf of my 40-year-old sister who has Down Syndrome and who my elderly parents and I  are desperately trying to get off of Ativan. 

 

Here's the sort of quick background:

 

My sister was diagnosed with Lyme disease, which caused tinnitus and noise and vibrations in her neck and back and made sleeping very difficult.  In late February, she started taking 50 mg of  Trazodone for sleep.  She became severely depressed by the end of May (resisting food and drink) and we initially attributed it to her being sick of suffering from Lyme and severe tinnitus.  But by the end of July, she started having extremely severe diarrhea, which we found from the drug insert could be a side effect of Trazodone.  We then found another insert that came with my father's prescription for Trazodone that warned about it being an antidepressant and to watch for new or worsening depression, anxiety, suicidality, agitation, etc.  We were finally convinced that it was the Trazodone that was causing this change in her. Given the severity of the diarrhea, we were terrified and felt we had no choice but to go off the Trazodone cold turkey.  We knew this was not recommended, but at that point we really thought something potentially dangerous was happening like Serotonin Syndrome (plus, upon later research, we found that some people have difficulty detoxifying Trazodone and that it can build up in their system and cause all sorts of emotional problems and anxiety--we kind of suspect that this is what happened). So, we tried to stop Trazodone on 8/2, then did it one more time on 8/5 and that was it---watery diarrhea the next day, so we were convinced we had to stop it.

 

On 8/4 my parents went to the LLMD (Lyme literate doctor) for my sister's appointment (my sister could not go with them b/c of the severe watery diarrhea). They told the LLMD about what was happening with my sister and that we had to take her off the Trazodone cold turkey.  The LLMD told my parents it was not the Trazodone (sold them a stool sample kit and probiotic) and gave them a prescription for Ativan (for my sister's anxiety)--it was for .5 mg 4 times a day.  She NEVER warned them about any potential side effects and she never told them that if my sister took it as prescribed she would become addicted and have to go through withdrawal to get off of it.  We decided only to give it to my  sister at night for sleeping (so .5 mg per night). 

 

At the time we started the Ativan, my sister was already in a severely depressed and agitated state, with extreme anxiety and panic attacks from the Trazodone and withdrawal from the Trazodone.  So, initially, we attributed all of my sister's extreme emotionality to the Trazadone withdrawal. But by mid-September, we realized that my sister's depression and mood (she begs us and yells at us to kill her and get rid of her all day long) was worsening and we finally figured out that  this was due to the Ativan.  We placed many calls to the LLMD and she basically ignored our cries for help in getting my sister off the drug and told us to take her to the hospital.  My elderly parents and I are now on our own in trying to figure out how to get my sister safely off of this poison.  We are afraid to take her to the hospital b/c we are concerned that they will just give her more drugs and we will never get her back.

 

We started tapering a few weeks ago.  The first taper was down to 3/4 of the .5 pill for three weeks.    Since Sunday 10/9 we went down by 1/8 (so, now we are at 5/8 of the .5 mg pill).  We are absolutely terrified by what is happening and are afraid we aren't going to be able to do this on our own. My sister has been suicidally depressed since prior to starting the Ativan. But since she's been on the Ativan, her depression , anger, agitation, and anxiety have only deepened. Now that we have started withdrawal, it's gotten even worse.  She spends most of the day screaming and yelling at us to get rid of her and to kill her.  She's also become aggressive and  at times violent (throwing things, hitting and kicking)--and this is NOT my sister--she's always been passive, gentle and kind.  These psychotropic drugs have absolutely destroyed her.

 

Right now, we are desperate for guidance as to how to safely get her off of this drug.  And we are desperate for any help suggestions as far as what we can do to lessen the depression.  At the start of September. we started Dr. Slagel's "The Way Up From Down" protocol for treating depression (at that point we still thought that the depression was simply due to the Trazodone and withdrawal from it--we still did not realize that the Ativan was worsening it).  Her program basically calls for Multivitamin, B50, P5P, Tryptophan and Tyrosine.  We haven't seen any benefit from this program yet (we are only up to 500 Tryptophan 2x/day and dropped the Tyrosine b/c we were nervous about it).  We also just started giving her homeopathic  remedies for the depression and anxiety (MoodBrite and Anxietin from hello life).  Those remedies haven't helped yet, but we only just started them.  For the depression, we've also been trying TMG and Methionine (to make her own SAMe) and Lithium Orotate, which haven't helped.  We also just started Rhodiola. For calming her during the day, we just added Passion Flower and Melissa--so far, no change.

 

Also, back to Trazodone for a second, some of the symptoms, which were clearly due to the withdrawal from that drug have subsided. The watery diarrhea is gone (though she does eat about 3 bananas a day). And the traveling tightness sensation is not as bad or as frequent.

 

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Hi  :) Welcome to BenzoBuddies!

 

I am glad you found us today. That is a pretty large dose of Ativan to start off on, and like all benzodiazepines should not be taken for more than several weeks for a variety of reasons. The recommended reduction rate is 5 to 10 percent every two weeks. Stopping too quickly can cause a host of unpleasant symptoms, some of which can be severe. Given your sister's Down Syndrome I think it is important to have her doctor involved in the taper.

 

Other medications

 

 

You might like to check out The Ashton Manual it is an authoritative source on what to expect in withdrawal and recovery.  Dr. Ashton is an expert in the field. 

 

Please feel free to post to any of the dedicated boards, we have a wonderful community of people here, who will give sound advice. Members have been through all aspects of benzodiazepine use and withdrawal and are more than willing to share their experiences.

 

General Taper Plans

Withdrawal Support During Your Taper

 

 

Please take the time to Create a Signature.  This will allow others to see where you are in the process so they can better support you.

 

Again Welcome!  :smitten:

 

benzos-R-cruel

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Benzos-R-Cruel-

 

Thanks for your response. I'll follow those links.

 

But to clarify, I think you may have misread my initial post.  I'm fairly certain my sister was on a low dose of Ativan--only .5 mg per night (we did not follow the prescription for .5 four times a day).

 

Also, the prescribing physician has already indicated no interest in helping us. She directed us to take my sister to the hospital.

 

Right now, we are trying to taper down by 1/4 every 3-4 weeks, maybe we will now go down only 1/8 every 2 or 3 weeks.

 

-Laura4321

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Laura, this is just appalling. I'm so sorry for your sister and the family. Nice of your doctor to dump her in your time of need. Can you find another doctor?
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[df...]
I'm sorry this happened to your sister. I was, before my benzo, a caseworker and know many individuals with intellectual developmental disabilities being placed on these meds. Not having the knowledge I do now, I was thinking it was okay if they needed it. I have since learned better; no one under any circumstances should be on these. I am so sorry because I'm searching for help myself. Prayers for you and your family.
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HardToCope-

 

Thanks so much for the sympathy.  I didn't know much about these drugs until it was obvious that the Ativan was worsening my sister's depression.  Now, after doing just a little research, I'm absolutely shocked that these are not banned.  Sorry to hear you are searching for help. We are in the US and though my parents have insurance for my sister, we haven't been able to find anyone to help us. Also, fyi, I'm actually a clinical psychologist (not working right now b/c I'm sick myself) and I was never taught the horrors of these drugs.

 

 

SolitudeSeeker-

 

Thanks for the sympathy.  Yes, this doctor is truly appalling and completely unethical.  Believe me, this is the last time we will ever trust a doctor.  I can't believe she prescribed this for my sister, when she knew my sister was in the midst of a cold-turkey withdrawal from Trazodone.  Plus, my sister is MR and simply doesn't have the coping skills of normal functioning adults.  That so-called doctor never warned us that my sister would have to go through hell to get off of this drug.  We are absolutely devastated.  My sister has been through so much. After a year of hell from Lyme (having constant tinnitus and noise and vibrations in parts of her body), we finally found an herbal protocol that was helping relieve her symptoms. But now, instead of being able to have some peace from Lyme, she has descended into a deeper hell all b/c  we trusted the doctor who prescribed Ativan.

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[df...]
I'm so sorry Laura...I'm in the US too; it seems there's not much help or at least that I've found..All of the psychiatrists are booked for months near me; hospitals just add back the benzo...Inpatient hospitals probably fill us with more meds that alter everything...It's truly criminal to me. There are people who need meds then there are those who don't. Had I known the addictive nature of the benzos, I definitely would have advocated for my consumers with whom I worked. If I survive this, I plan to champion them.
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HardtoCope- Sorry to hear you are in the US and experiencing the same problems in getting help.  For my sister, my parents actually have a few types of insurance and coverage, but so far none of the places they have called will help us. Either they don't take the type of coverage they have (and they even refuse when my mother offers private pay cash), or they are completely booked, or they simply don't want to take on a case already made a mess by others.  We (my elderly parents and I) are committed to doing this alone and keeping her out of the hospital if at all possible. We realize that if we simply kept working on herbal protocols for the Lyme and doing our own research we would have been fine--our greatest mistake was going to a doctor.  So, we know that if we end up going to a hospital, that will be the end for my sister--they will simply add anti-psychotics and who knows what else and we'll never get her brain back to normal.  I'm sure this is going to be the greatest battle of our lives. And for my sister, she's been through so much hell already, I'm just not sure how much more she can take.

 

Also, fyi, before all of this, she was actually a high-functioning Down Syndrome person who worked part time in a mailroom at an insurance company and played sports.  Her whole path into sickness started with Big Pharma poison known as Tamiflu--it blew out her gut, she ended up with SIBO/IBS, then the psych stress of that (and her bad chemistry) led to fibromyalgia and chronic fatigue.  The Lyme was dormant in her and it popped up when she was at her weakest.  And after a year of Lyme hell, she is now in deeper hell all b/c of another Big Pharma poison.

 

I'm sorry to hear that you are going through this nightmare as well and hope that you are able to survive--we definitely need people to start speaking out about these benzos--they should be banned!

 

 

Braverabbit--No, unfortunately we are on the East coast.

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[df...]

Laura,

    I'm so sorry...I can imagine what's she's experiencing...Much of what you described is how I feel daily; just an adverse or paradoxical reaction to these meds; change of personality. I'm absolutely terrified...To take a sane person and give them something that completely rewired the brain. I will pray for recovery for your sister. You may even call some of the group home/IDD Local Authorities who may be able to direct you. They are the hub of services. Also, maybe Advocacy Inc...

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This situation is absolutely heartbreaking. I know pharmaceuticals are the last thing you want, but i would suggest adding meds to help control her pain and agitation. It may seem extreme, but a sedating opiate like morphine would probably help anxiety, insomnia, and depression, agitation, and will also act like an anti diarrheal. Could also add something like gabapentin to massage the GABA receptors, and it's fairly easy to taper off of compared to most benzos. If you are resourceful you could also make natural opiate tea. check out poppy seed tea, and poppy pod tea. for her I would recommend pods. 1 dose would last consistently all day. if this sounds like something you would want to consider and you have more detailed questions feel free to pm me. If dependency developes with the opiates they can be easily tapered or stopped with ~week of withdrawal compared to possible months on benzos. Like I said it seems extreme, but the fact that she does have a mental disorder could make it difficult for her to practice the necessary coping mechanisms a lot of us learn to get through withdrawal. I don't know what else to say other than I hope you are shown mercy by the powers that be
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HardToCope-

 

Thanks so much for your support.  I'm so sorry to hear that you are also feeling what my sister is going through. Yes, it's absolutely terrifying.  We are still in a state of shock that a doctor did this to us. And we are terrified that we aren't going to get my sister back. The only thing we are holding onto is that at some point during the day, for 10 minutes or sometimes an hour or so, she calms down a bit and we see her normal personality--we know she's in there.  Unfortunately, the rest of the day she is absolutely miserable--yelling and screaming "get rid of me," "kill me," "throw me in a dumpster" (I've never seen a depression like this).

 

It's also extremely difficult given that both of my parents are elderly and not in good health.  The Lyme nightmare took a tremendous toll on my mother--she's lost a great deal of weight and now has problems with her gall bladder and high blood pressure. And my father has cognitive issues and problems with insomnia. 

 

The other problem we are contending with is that b/c my sister is suicidally depressed, we have trouble getting food and water in her.  We were doing better for a while, but now things are getting worse.  Every day we have to struggle to get enough in her and we are constantly worried that we will have to take her to the hospital b/c of dehydration (and as I said earlier, the hospital is the last place we want to take her). 

 

We have some information on support services for adults with developmental disabilities, but we are also nervous about getting others in an official capacity involved--we are worried that they will somehow say we are not doing right by my sister and that she needs to be in a hospital.

 

 

 

Nostalgiapathy-

 

Thanks so much for your sympathy.  Yes, we are absolutely devastated by what has happened.  I greatly appreciate your suggestions, but right now we don't even have a doctor to work with us (also, fyi, the diarrhea from the Trazodone has stopped--she's totally normal now in that regard).  I'm not at all resourceful--I'm on duty 24/7 and barely have time to read on this forum--so the tea is out for now.  And you're completely right--b/c of the Down Syndrome, she doesn't have the same coping skills other adults have for getting through this type of hell. To her credit, she actually coped remarkably well with all that she has been through (SIBO/IBS, Fibromyalgia, CFS, losing her job of 17 years and her sports activities b/c of sickness, and neurolyme), but the hell from these pharmaceuticals has been too much--they completely destroyed her. 

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I'm so sorry for you all. One thing you mentioned that sounds encouraging though - you said there are moments when your sister is more calm and you can see her true personality show through. This is a good sign - she has what we call "windows". This could indicate that her brain has the potential for healing from benzo injury once she is off the poison.

 

I hope at some point you can really give that doctor a piece of your mind. This is unacceptable.

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[df...]
Laura..I can understand being wary of getting anyone else involved of an official capacity. I fear this for myself; a sane person to feeling insane and unlike myself...afraid I'll be sent somewhere I don't want to be. I believe though that you could call the Local Authority; not sure what it's called there in the North but in Texas, that's what it is...you could maybe inquire of a place that might be able to help. When I was a caseworker, a lot of our consumers were on these psychiatric meds and I just can't imagine now...how they survived it...or could even let people know if there were reactions. We did have one consumer who was depressed after the passing of her mother and her personality changed; was taking psychoactive meds...severely depressed and stayed in bed. Someone on this site said that if you had to go to the hospital, could put that one is allergic to the benzo and they won't give it. I hope you all find resolve...I've had a terrible day today too; couldn't imagine another of my loved ones experiencing this pain.
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HardToCope- Thanks so much for yours suggestions. We will definitely have to look into this--we are desperate for help and support.  I'm becoming more and more outraged every day that goes by and I have to watch my sister go through this emotional torture. It's absolutely criminal that they are allowed to prescribed these. And I can say from my background, when I was new to my profession and did a internship at a community mental health facility, there were plenty of people on these drugs--they never talked about how addictive they were or how people had to go through torturous withdrawal.  And now I can't help but wonder how many of those people who were coming for help were already damaged by these drugs.  I know that anyone looking at my sister would call her insane, and probably if we took her to a hospital, they would put her on anti-psychotics--But this is not my sister, she's not crazy--this is just what these horrible drugs have done to her. 

 

So sorry that you had a horrible day too--I was hoping that as a person gets further along in this withdrawal process that it would become easier and less torturous. 

 

 

SolitudeSeeker--Thanks so much for your info on "windows"--that helps to hear.  I pray that we will be able to get her full personality back.  Yes, we definitely plan on dealing with that doctor once things settle down. We are beyond outraged. What she did is obviously unethical.  It seems like the proper protocol is for the prescribing physician to work with you and help you set up a taper schedule to get off.  Every place my mother has called so far has basically told her she needs to go back to the prescribing physician.

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Could try ketamine or MDMA to jump start the process. There is a lot of research coming out about medical uses for both. Mainly for depression, chronic paws, stuff like that
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There are benzo wise psychiatrists that would probably be willing to help. Hell, I was in bad shape trying to come off of opiates, and I found one that was sympathetic and provided Valium, clonodine(blood pressure meds) and soma. There is always someone out there willing to help. As long as she has a decent ppo, I can't see you not being able to find someone. You may want to report that doctor to the board of medicine
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Laura...

I hate to hear all that your sister and family are going through. Ativan is hard, I know, and so can trazadone. Trazadone made me hateful and irritated. I too didn't know the harms of the Ativan, and I was low dosed too. .5 mg daily. I started this past July and just realized about two weeks ago what it was doing to me.

I am in the Midwest US. Have you or your family sought out any help from disability outreaches or county boards or healthcare? Perhaps even a psychiatrist? Your sister seems very fragile, and with all and has been through and going through some help from the mental aspect and medical guidance would be my suggestion. I know the mistrust f doctors, I have it myself. it can leave you scared and alone, unsure. My heart cries out to you and your family.

It does seems positive that she has some windows! But given how your perspective states, she has been through so much...

My heart with you!

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Nostalgiapathy- Thanks for the suggestions.  Honestly, given my sister's bad reactions to a number of pharmaceuticals (Tamiflu, two antibiotics for Lyme, Trazodone, and now Ativan) we are really quite terrified of putting any other drugs in her system.  We're pretty sure part of the problem is the Down syndrome and vulnerable biochemistry that goes with it.  We are still trying to find someone to work with us--my parents have made tons of calls.  Most just direct us back to the prescribing physician (who has already indicated no interest in helping us, and yes we plan to report her or whatever--we have to do something).  One place seemed like a possibility, but then indicated no special needs people.

 

 

Pumpkin2005- Sorry to hear that you have had bad experiences with Trazodone and Ativan.  My mother has been making lots of calls and so far we haven't gotten much help. My sisters primary care doctor (from prior to Lyme) did call us back and suggested the slow tapering, and gave some referrals for psychiatrists that didn't work out.  My mother also called the local ARC (for people with developmental/intellectual disabilities) but they had a waiting list for a psychiatrist.  Also, as I said above, we are quite terrified of putting any other drugs in her system--we're pretty sure that what happened with the Trazodone had something to do with her inability to detox it properly and that levels built up in her system (http://survivingantidepressants.org/index.php?/topic/2883-tips-for-tapering-off-trazodone-desyrel/). We are still interested in having someone help us get her off this drug safely, but so far we haven't found anyone.  And we definitely do not want to put her in a hospital--we are sure they will simply pump her body full of more of these toxic drugs and we'll never get her back.  The other problem is that we still want to try to keep up this herbal protocol for the Lyme--the last thing we want is for those symptoms to get worse again.

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It is terrible that no medical professional is willing to help you. What a mess. It is why so many people turn to this forum.

 

I cannot advise, nor can anyone here. But I will suggest going to the Ativan tapering thread and reading the stories there. Get an idea of tapering rates and what seems to work for people.

 

Some people do a hold - staying at the same dose for some time, until symptoms stabilize. Then proceed with the taper very slowly. Tiny, tiny reductions. Your sister may be able to tolerate this technique.

 

I wish you the best.

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Go to the website Benzo Wise Doctors. They have some east coast doctors listed. I found my west coast Dr Madill through this site. We drove eight hours round trip for The initial consultation was  in his office, and now we have a once a month phone consultation to check up on progress and prescribe new meds etc. My primary Dr. who had over prescribed the benzos in the first place refused to work with me on a taper program, and actually became hostile. After futile attempts to get medical help in my area I gave up, and made the drive to Dr Madill. This is working for me. He is an excellent benzo Dr. and my taper plan is going well. It is truly awful that help is not readily available

 

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  • 5 months later...

Well, it looks like it's over for us.

 

Things have gotten extremely bad within the past week or so, though we have been on the same dose of Ativan (less than 1/16) for over a month.

 

My sister is still suicidally depressed (she begs us every day to take her outside and kill her), and she's extremely anxious/terrified.  (Please bear in mind, she used to be a highly functional and independent person with Down syndrome-she worked for an insurance company in the mailroom for 18 years, took public transportation to her job, and participated in a number of sports with Special Olympics).  Now, she is for some reason terrified of going to the bathroom (#2), probably b/c of the occasional diarrhea she experienced with the withdrawal process.  In the past few days, the violence has escalated and we can't manage her.  She attacked me three times yesterday. 

 

This morning she woke up screaming at us to open the door and take her outside and kill her.  She hasn't stopped screaming. And she attacked us about three times already, and it took all three of us (my elderly father, mother, and me) to stop her.

 

So, this is what getting involved with Ativan has done to us.  We tried to do the withdrawal on our own, but it's no longer manageable.  So now, we feel we have no choice but to go to the hospital (she's too dangerous now--she tried to bite me three times in the past two days).  I'm sure going to the hospital will be the end for my sister--I'm sure they will drug her, probably complicate the withdrawal process, and I doubt we will ever get her sweet, happy, cheerful self back.  We can't leave her alone in the hospital, so it looks like my elderly mother and I will have to take shifts living at the hospital (my mother already has high blood pressure, and I wouldn't be surprised if the next step in this never-ending nightmare gives her a heart attack).

 

In prescribing Ativan, that LLMD ruined our lives--we now know it was contraindicated for someone in my sister's condition and should never have been prescribed.  We trusted our doctor and she destroyed us.

 

 

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Laura, I am so sorry for you and your family. What has happened to you all is very very wrong, and unfair.

 

I would seriously think about finding a medical malpractice lawyer and filing a law suit.  At the very least file a complaint with your state medical board. I plan on doing this in a few months when hopefully I will be further along in my recovery. We need to at least try to stop this nightmare.

 

Please let us know how things go. You have buddies who care and support you.  :smitten:

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There is more to add to this, I left some out (Honestly nervous they are going to look this up b/c I mentioned the forum--I know that sounds crazy, but I'm so scared and DO NOT TRUST these people)

 

OMG- I just got back from the hospital

 

This is turning into a horrific nightmare. The doctors completely dismissed what we (father, mother, me- who is a PhD. Clinical psychologist) said, which was that my sister had NO EMOTIONAL problems until we got involved with these psychotropic drugs.

 

The arrogant psychiatrist and staff told me "we are confident this is NOT withdrawal" b/c you don't get withdrawal for such a low dose.

 

They were misconstruing everything we said to make it seem like it wasn't the drugs, it was just my sister. They would NOT let us leave. They gave us something Visteral? and said it was NOT a psychotropic drug (b/c we said we did not want that), then someone slipped and said it was, so I Have to research this.

 

We were given no indication until it was TOO LATE that they would not let my sister leave---she is now involuntarily committed. We said we had to get her out of there b/c we need to continue her Lyme treatment. They told my mother she could stay over night (I WAS THERE, I HEARD IT), now they are telling us she has to go (I am home w/my father, my mother is franticaly trying to stay. Okay, update, they are letting my mother stay, as long as my sister doesn't get out of control (as if my sister's mother would upset her--these people are INSANE). How dare they threaten to make a MR person's legal guardian leave. My sister cannot advocate for herself!!

 

They insisted it wasn't withdrawal, but then indicated they specialize in this and seemed to suggest they could handle the withdrawal and that the doctor would give the appropriate dose. I then realized we were being scammed, and that it was their intent to make her do a cold turkey withdrawal. (PLEASE HELP, SOMEBODY PRIVATE MESSAGE ME)

 

They arrogantly REFUSED to hear what we all said: that my sister had NO EMOTIONAL problems until we got involved w/these psychotropic drugs. The psychiatrist didn't understand ANYTHING we were saying. They are forcing us to have a Devel Disabled evaluation, which is fine, but then the guy said maybe she needs some behavior modification training, when we said over and over again, my sister was a high functioning, independent person w/Down Syndrome, that she held a part time job for 18 years and took public transportation by herself to her job.

 

And the staff were increasingly RUDE to me, b/c I was NOT believing what they said.

 

So, now tonight, I have to print out lots of information backing up our claims (side effects, info on withdrawal, etc). Oh, GOD what a freaking NIGHTMARE.

 

Then, the crazy psychiatrist asks me " how long has she had auditory hallucinations" and I said they are NOT hallucination, it's TINNITUS. It's from the Lyme.

 

Also, my parents are my sister's legal guardian, but they said that that doesn't apply to psychiatric treatment, so they apparently can override my parents wishes and do whatever they want to my MR sister who cannot advocate for herself. So, my father had to quickly call the lawyer to help us.

 

These people are the crazy ones!! I was taught this in one of my abnormal psych classes--there was a study that proved these psychiatrists were biased to see even NORMAL behavior as mental illness. I saw this today--he was misconstruing everything I said. And he took NO NOTES, so how is he to remembered our detailed sequence of events? And the timing of when she was given the drugs and when her symptoms appeared

 

OMG, I can't believe what's happening, but I expected b/c I've seen the horror stories online--these doctors always say it wasn't the drug. Then they get a customer for life.

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