Need help for sister--urgent situation!

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Hi,

 

My sister left her controling husband of 20 years.  At first, she was coping--got a small basement apartment and started to appreciate the healthy relationships she was developing with new friends.  She was having trouble sleeping, and felt guilty about leaving, so she went to a psychiatrist (yep, MD) somewhere around Jan-Feb.  After 3 45 minute visits, she was put on Ambien, Prozac and Xanax (I know this was .5 4x/day).  She was already on Tramadol for a pain problem as needed.  I knew about the Prozac, but not the other meds at the time.  Things spiraled out of control--at first she could still visit but she got very agorphobic and would not allow anyone to visit--refused to answer the door.  She did maintain phone contact in short calls.  I am certain that she was taking the Xanax more as needed than as prescribed and cant guarantee if she wasnt doing that with the Ambien etc.  After a few more weeks, the psychiatrist said she could no longer help her and sent her to a day program---here the Ambien was changed to Lunesta, Cymbalta was added, and the Prozac was increased.  There was no individual treatment and in 2 weeks, she had made no progress.  The program suggested she stay another week and this week they have upped her Cymbalta, increased the Xanax to 1mg 3or 4 times/day, changed the Prozac to Wellbutrin.  She said she is having trouble breathing and despite a desperate phone conversation last night--she refused to let us help her.  I was afraid that showing up might be a real problem because she was so paniced.  She lives 2 hours away and the last 2 times I went, she would only speak to me for ten minutes in the street and only if I promised not to get out of the car.  She called later and apologized and said it was just not her.  Any insight here would be appreciated---I know many of you have been here.  She doesnt eat, gets little sleep and is living on these pills.  She knows she is sick but cant reach for help.  After I saw what was happening to her, I stopped 2mg of Valium I was taking for muscle issues and have suffered my own W/D--cant even believe the difficulty I have had and know that this is a fraction of what she might have to go through.  Our family knows this is so serious, but we dont know what to do and some think the meds are the solution not the cause....How do we even find help?

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I'm so sorry to hear what's happened to your sister. This presents big challenges for you because, ultimately, she has to agree to help.

 

She is on so many drugs, who knows whether they're helping or whether they're hurting. Personally, I found the more drugs on was one, the loonier I felt. On that much xanax I would be sleeping alot.

 

I guess if I were in your shoes, I would scout out psychiatric treatment facilities. Maybe inpatient treatment is an option she would consider. It sounds as if feeling safe is a top priority for her.

[[wh...]]

Try not to totally lose contact with her, even if its only 10 mins.

Have you and her had a good relationship in the past?

what does SHE say about herself and whats going on?

 

I wont have access to a computer til monday

good luck

try and stay calm, it wont help if you are panicky

[[re...]]

I agree with both Yram and What2do.  You need to keep some form of relationship with her to keep some form of trust and try to find a good pdoc that really will listen.  My son is sick and on a lot of meds and I am going to start talking to his pdoc about some reductions or changes.....Psychiatric drugs are the hardest drug to have to deal with, what works for one does not actually have the same benefit for another. 

I hope all works out!

[[Li...]]

I was also put on a continually changing cocktail of psychotropic drugs following an incredibly stressful and tragic life situation. Overnight I went from a normal grieving person to an anxious, depressed mess, and I was so drugged up that it never occurred to me that the meds were the problem instead of the solution. I was hospitalized several times, raged at my family and friends, became restless and risky, went from feeling nothing to feeling everything, was angry and isolated myself from others, made important decisions on a whim...and I had never had any problems like this prior. My family and friends watched in horror, trying to help but unable to do very much because I resisted. It took me years to get out of the spiral, and I am only now starting to remember things clearly from that time period and put together what happened to me.

 

In no way do I mean to minimize the usefulness of these medications...I firmly believe in some cases they save lives. But in some cases they complicate matters immensely, especially when an individual is already dealing with grief and difficult life changes. It becomes impossible to say what is helping, what is hindering, and what is causing what. Is it complicated grief? Is it mental illness? Is it side effects and/or withdrawal from medications? Is it a medication interaction? Is there a hormonal problem (reproductive, thyroid, etc)?

 

My advice would be to stick by her no matter what, as long as you are able to enforce healthy boundaries (ie, don't let it destroy your own life or health), and continually express your worry, concern, and love for her. Let her know that you wonder if the medications are making things worse instead of better, and that you'll always be there for her. Try not to blame her for what's happening...I am willing to bet that when she gets herself out of this, she's going to feel awful about the things that are happening now. Personally, I am so grateful that my family and a few of my good friends stuck around and saw me through these horrible years in spite of the way I acted. I am embarrassed and a little ashamed of some of the more ridiculous outbursts I had and the hurtful things I said and did. However, I also know it wasn't truly me who said and did those things, so I try not to waste too much time and energy wishing things had been different. It happened, and it was awful, but I have to pick up the pieces and move on. I am just grateful I made it through to the other side at all, and am busy rebuilding relationships and working through my feelings about everything that went down.

 

I am fairly certain that the benzos were the source of the most pain and suffering for me, both while I was taking them and now, while I am withdrawing. I certainly can't make any kind of claim like that for your sister, but her story parallels mine in that benzos are being prescribed in ever increasing amounts, and simultaneously all kinds of other psychotropic meds are being added and discontinued. That makes things so complicated, and the fact that all of this is happening at once gives you a very solid foundation to question why benzos are being increased when simultaneously other meds are being added, possibly to deal with effects of benzos in the first place! It might be worth a try to ask your sister for permission to consult with her physicians. It sounds like she won't allow that, but it's worth a try. If she won't agree to that, you can always print off some info on benzos to give to her. I wish I had been given info on the way these are supposed to be prescribed (for 2-4 weeks only), the side effects, and the withdrawal timeline and symptoms. That information might have saved me years of physical and mental pain.

 

Best of luck to you, and please keep us informed of how she's doing!

 

Libby

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Libby

 

Thank you for your note.  You have been through so much and I am so glad you are healing.  Can I ask you how you finally got the strength to accept help, how you determined that the meds were integral in your difficulties, and how you found the reserves to  struggle through the withdrawals. 

All of this is really complicated and hard to understand, especially since I have little faith (and am actually fearful that the doctors will make this worse) in the physicans.  I know this is not my sister...she has never been anything but kind and pleasant until now.  I know this is not her fault, but she doesnt yet. 

Thanks

Shell

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Dear yram, what2do,renee

 

Thank you for your kind words and suggestions.  I made an appointment with a psychologist for Monday night to try to figure out the best way to help her and to determine if this practitioner is someone who will be open to helping us in a way that is sensible and healthy. 

We have always had a good relationship.  She enjoyed visiting and had a close relationship with my kids.  She has had issues with self esteem, but now she is housebound and knows she is not herself.  I dont want to push her too hard, but worry that if I dont push things will keep getting worse.  Despite the meds, no progress is being made--she seems to be getting worse.  Well, I promised not to visit until the outpt group says her time is up, but they just extended her and changed her meds.  Looks like Wed or Fri now.  Then I am going to try to get her.  Want to have some services in place and hoping she comes with me.

 

Again, I appreciate you thoughtful input.

Shell

 

[[Li...]]

Hi Shell-

 

Those are good questions! My story is complicated. Personally, it wasn't until I developed some horrible "episodes" that I was willing to taper off all of my medications to find the solution. I began having tactile hallucinations last fall...and it was terrifying. When several specialists failed to find a physical problem, we all wondered if my medications were to blame. I wasn't on anything new, but I was desperate. Ironincally, I was mostly off benzos at that time and had been for maybe 6 months. However, I was taking "rescue doses" of klonopin when I would have "flares" of symptoms that were undiagnosed...of course, those "flares" were benzo withdrawal, and I was clueless, as were my doctors. (In hindsight, hello, the fact that the klonopin helped should have been the first clue for me!) So while I wasn't taking benzos continuously, I was taking them intermittently...which may even be worse. To this day I'm not positive what was/is causing the hallucinations, but when they first started, I was a wreck and the first thing I did was get back on ativan before tapering off my other medications one at a time. By December, I was free of most of my medications, except short-acting opiates for chronic pain from a spinal cord injury (had gotten off of long-acting opiates) and ativan for anxiety related to the hallucinations and sleep. At that time, my mood was better, my attention span was better, my pain was better controlled...and I was shocked. The medications I had depended on so desperately were either making me more sick or at the very least not helping matters! The "flares" that had plagued me every day were gone (because they were benzo withdrawal from fluctuating doses, and I was now on a consistent benzo dose), and the hallucinations were not happening as often. Life continued on, and in April I cut my ativan dose in half because I didn't feel I needed it any longer. I was of course thrown head-first into withdrawals, and I *FINALLY* started to put it together and do some research. Since my medication regimen was significantly simplified, it was easy to finally put it together.

 

Once I realized that benzos could have been the culprit all along, I made up my mind to get off. I was on a low dose of ativan, crossed over the klonopin for the longer half-life, and tapered off over the course of a month. I am four weeks benzo free today! It hasn't been unbearable, but it's been uncomfortable and difficult, some moments more so than others. My chronic pain has gotten worse, muscle spasms are worse, insomnia is much, much worse, and other symptoms were (and are) intense. But I take such strength in knowing I WILL get better, I WILL heal, and any small amount of improvement is so exciting to me because I know it is a sign of things to come! I am able to not panic when symptoms arise, and I'm not desperately searching for some treatment or medication to make them go away, because I know it's a documented symptom of benzo withdrawal and only time can heal that. This is in stark contrast to this time one year ago, when I was in the thick of benzo withdrawal and did not know it.

 

Currently, the hallucinations are rare and manageable, and I will not be surprised in the least to find them possibly dissapear completely as I get farther along in my healing. In a way, I am thankful they appeared, because without them it's difficult to imagine another situation that could have convinced me to try living without so many medications. Suddenly, much of the past six years makes sense and is less scary. Suddenly, I am not a chronically ill person, but a person who was taking too many medications and became ill as a result of that. I do not expect my chronic pain to go away, but I am certain it will decrease the longer I go without a benzo. Everything else, I expect to decrease and disappear. Once I understood what the benzos were doing to my mind and my body, I couldn't keep taking them! Withdrawal is tough, but it's the only way to a better life. Off antidepressants, I am not depressed. Off sleeping pills, I am still sleeping most nights. Off anxiolytics, I am not anxious. Off long-acting pain killers, my pain is still manageable most of the time.

 

My spinal cord injury is the result of a car accident two and a half years ago. I have finally decided I am strong enough to take on litigation, and have thus been collecting my medical records for my attorney. I was more than a little dismayed to see several doctors refer to benzo withdrawal over the years...not one of them ever mentioned it to me! Reading through those records is tough...I have cried and cried over it. It's like reading somebody else's medical records. It's a glimpse into a life gone horribly awry. However, it is also a positive thing...because there is a concrete, visible, direct correlation between more meds being added and my increasing downward spiral. Conversely, as I tapered off meds, it's there in black and white for me to see that I started to improve. I still have a long way to go, I know, but I also know I'm through the worst of it. Nothing can compare to the depths of despair I was in when my benzo intake was at its peak. If I survived that, I can *certainly* survive this!

 

Of note, I was diagnosed with fibromyalgia a year and a half ago (when I was on a relatively high dose of klonopin). Last week, I made an appointment with the same rheumatologist who had diagnosed me, told her what I have learned about benzos, and asked her to evaluate me again, keeping in mind I am still in the thick of benzo withdrawal. I am thrilled to say that I do not currently meet the criteria for having fibromyalgia!!! This is HUGE, as I'm having a fair amount of withdrawal symptoms that fit very nicely into the category of fibro...so if I don't have it now, I certainly am not going to have it after withdrawal. It just reiterates to me that indeed the medications were causing enormous problems in my physical and mental health. It was also an eye-opener for that doctor!

 

I know this was a long response, and thank you for reading it. I hope it helps answer your questions.

 

Take care-

 

Libby

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Libby

 

Thank you for taking the time to write this detailed response.  I am so glad you are getting better...you have been on such a long road and I know sharing it with me will make a difference in how I approach trying to help my sister. 

 

I have been trying to get her medical records because I think they will document the downward spiral that the drugs have induced, just like you noted. 

 

It takes incredible courage to do what you have done!  I dont say that lightly.  I am so thankful for your willingness to be so open and helpful. 

[[ge...]]

Poor girl goes to a phyciatrist for help and typically the easy answer for these professionals is put patients on these drugs..They hand them out like lollies. And THEN charge you 250 to 300 dollars to see them... Your poor sister is going through hell and now does not want to see any one and i am sure her only comfort zone is her bed or a chair now and does not want to answer her phone and does not want to look forward to future events and just the thought of some one coming around is too much for her..That is exactly how i feel as that is the benzo that brings on depression, anxiety, and so forth... as you have probably read it just puts any problems your sister was having on hold before she went on the meds... The phyciatrist could of done a thousand other things to help her but instead took the easy root, yet i bet he would not prescribe the same drug for himself and definitely has not been on any of them...They are meant to be a doctor of the mind yet they come to conclusions to quick...

 

You are great to be doing this for her and she does need you but, she has to want to get off these as she is taking a cocktail and the ashton manual will help with all that... I GO to a phycotherapist not a phycologist as i found the therapist really wants inside my head.... i also rang a benzo line in Australia which i am sure are in all parts of the world... might be hard to find but the way i found out by ringing a life line first then just keep ringing differant lines like the drug line, and so forth until i got the right number and then i found a  benzo specialist that only deals with benzo patients , no one else  it might take a bit of home work but they are out there and they give you rest assurance and treat you with empathy, non prejudgmental and really work

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Thanks Genuinehost

 

I am trying to find someone who specializes in benzos, or even understands them, but it doesnt seem to be that easy--as you mentioned.  I do have an appointment with a counselor who has a background in addictions so hopefully he will be someone who can help.

 

I know she had issues to deal with, but you are right, these meds just complicated everything.

 

Shell

[[Li...]]

Hi Shell,

 

How are things? Any news? Thank you so much for both of your posts! The neurofeedback was SO informative, I really appreciate it, and your response here as well made me tear up a little. I am so glad if even one person can benefit from my story, so I am more than happy to share it.

 

Wishing you all the best,

 

Libby

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Hi Libby

 

Not good news on this end...the outpatient program my sister is in keeps uping the drugs.  She has committed to another week there.  I trying to find a therapist where I live to try to guide us through this mess who is sensible in their approach and responsive to the idea that the drugs are at the root of her decline.  At the end of the week, I hope she will agree to try another treatment option. 

 

Hope you are doing better with each day.

Shell

[[wh...]]

Hi, whats the details on this outpatient program? what drugs and strengths are they giving her? How are YOU doing (are you keeping your cool)?

i found  a great counselor by searching the internet for "christian counseling"  (there are secular counselors as well)

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Thanks for your suggestion about finding a counselor What2do!

 

The program my sister is in is all about getting her on medicines to "stabilize" her.  At this point they just keep upping her dosage and her symptoms are not anywhere near better!  She is currently on Wellbutrin, Cymbalta, Xanax (I think 3 mg), Lunesta, Tramadol!  She is listening to them.  I am trying to caution her but dont want her to do anything stupid like just quitting them all.  She is no more than 100lbs and average height.

I think at the end of the week when they "release" her, significantly worse than when she started "treatment", she might actually accept help. My family just thinks she should do what the doctors say and take the drugs.  I am out of my league here!

Shell

[[wh...]]

sounds like theyre trying out diffirrent things to see what works for her. I know lunesta will help some people sleep (it just gives me nightmares) . the cymbalta is a special kind of antidepressant.

 

Shell probably want to hang on to the xanax (I did)( its really addictive) It worked for a short time (coupla months) after that it was downhill except I didnt  (or couldnt )know it was the xanax. 

 

Let us know what they settle on, im no expert.  

[[Li...]]

Thanks for the update Shell. Is she a pain patient, by chance? It sounds like maybe so, from the Cymbalta and Tramadol. Keep us posted when you can, and come back for support/ideas if you need them!

 

Best-

 

Libby

[[fi...]]

Hello Shellmac. I am so sorry for you and your situation. It is one of the worst feelings to have someone you care for going through this type of situation and not know how to help them and feel helpless. You asked in one of your posts how one of the other members finally had the strength to accpet help. My family and friends pleaded with me for almost 4 years and it wasnt until I actually knew that I was not alone in my experience through forums such as these. When your going through this and your doctor fails you and your medication fails you and everyone you seem to talk to doesnt understand you feel alone. After 4 years I finally read Ashtons Manual and became a member of the forums and I immediately knew that I wasnt alone and within a month I was tapering. Keep whatever relationship you can with your sister and let her know shes not alone and continously support her into researching her issues by coming to sites like this one. Ulitmately she has to make the decision but through continued support and it may take sometime she will know shes not alone and has all the support she needs. Good Luck to you and your sister. 

[[Li...]]

Hey Shell-

 

How is your sister doing now? Any change?

 

Libby