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Hello community,


My mother is 75. She has been an insomniac and suffered from anxiety/PTSD her whole life. She was prescribed Pregabalin and was using it as sleep aid for three years.


Several months ago, she complained about a rash that was preventing her from sleeping because she was constantly itchy. As time went on, the rash became more and more torturous for her. Day after day I would hear her say she didn't get any sleep, and spends all day scratching herself. She also complained that the pregabalin was making her dizzy, brain foggy, and blurring her vision. I thought perhaps the pregabalin was also causing the rash. So I advised her to tell her doctor she wanted to taper off the pregabalin. Her doctor complied and advised a taper which I thought was not gradual enough, so I told my mom to double the length of each step in the taper. I told her to try valerian and melatonin as a sleep aid.


It just kept getting worse. The rash continued. The insomnia continued. The itchy torture escalated to the point she was saying she didn't want to live any more. She began having panic attacks, calling the suicide hotline, saying she can't eat or sit and had to constantly be moving.


One day she called me and said she was driving herself to the emergency room because she was afraid she was going to kill herself and did not want to become a ghost. Having been 51/50d myself many times, I was afraid if she showed up to the emergency room in her delirious state talking about suicide she would be trapped there. I told her to turn around and go home, and tell her doctor her symptoms: overwhelmed by dread and had gone along time without sleep. I assumed she would be prescribed benzos.


She was prescribed .5 mg of ativan twice daily, but was only taking one pill a day at night before bed. The ativan did allow her to sleep, but during the day her rash and panic attacks persisted. After a few weeks she was bumped up to 1mg twice a day but again was only taking one pill before bedtime with an occasional dose during the day. Eventually the rash went away, but the panic attacks persisted. The focus shifted from the rash to the management of what I thought was an episode of panic disorder. Was it pregabalin withdrawal? Did the ativan make it worse? In my mind it was a case of choosing the lesser of two evils: effects of not sleeping for long period of time vs. ativan dependence.


She continued to take ativan for three months, then switched klonopin. Then she was unmanageable. She wound up in the hospital, was prescribed anti-psychotics and did an abrupt taper off klonopin. She spent three weeks in the hospital.


I'm sitting next to her now. I can't have a conversation with her. She constantly has a look of confusion and terror on her face. She repeats the same words incessantly. She marches in place and stares at me, paces around in circles constantly. She is hunched over. Sometimes she sticks her tongue out of her mouth and makes strange noises and strange faces. She cannot be reasoned with, has paranoid delusions. I cannot get her to eat or drink water. The person that was my mother is not here any more.


It's so sad.

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It may be dementia, but in my opinion doctors often jump to that conclusion when someone is over a certain age without bothering to look at the whole picture. Has she had an MRI? A sleep study? And if she is recently much worse have you checked for a UTI?
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What does the psychiatrist in charge of her care say?

Is the tongue thrust Tardive Dyskenesia?
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Nandulal Dec 2021
I am waiting for a zoom call with new doctor because current doctor will not return my calls. The medical staff in this area seems incompetent. She has medicare and medicaid. My assumption is tardive dyskenesia.

I would have to carry her into car to take her to doctor, and she would be breaking my heart by pleading with me not to take her back to hospital. We are in West Virginia, it's freezing out, and when she wandered out into the cold with no pants or shoes I picked her up to bring her back into the house and she screamed out in pain.
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Without EXCELLENT neuro-psyc consult and evaluation/testing, there is honestly no way to TELL which you are dealing with, mental illness or psychiatric illness. Sounds as though you are trying to access care, and unable. I am uncertain why you don't wish to have any help from the psyc units at this time, because inpatient evaluation would be, in my opinion as a nurse, the best way to get evaluation, diagnosis, testing, and a drug cocktail that is observed and that helps. With both dementias that require psychotropics and mental illnesses that do, the treatment is hit or miss, anything but an exact science, and needs on site evaluation for best observation and evaluation. Sure do wish you good luck. As to the itching, do be certain that you are not dealing with a REAL allergy, with bedbugs, with something that is being cast off as mental but may be real.
Sorry you are dealing with all this and surely do wish you the best.
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Nandulal Dec 2021
We are in the hospital now, hoping they will find an answer. I do not want to play doctor with google searches and even though the system is flawed I obviously can’t do better.
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Let me start by saying PLEASE insist your mother was put on klonopin. This is why you can't even hold a conversation with her. That drug will knock the stuffing out of anyone.
Why was your mom taken off the ativan (lorazepam)? That's a good drug that works well to manage anxiety and panic without tremendous side-effects of anti-psychotic drugs like klonopin and halidol. I've been a caregiver to many seniors who were prescribed klonopin or halidol. Not a single one had a good experience with it. Not one.
The big worry about seniors taking drugs like ativan is fear of dependency. They would rather an old person become a total vegetable completely out of their mind, then risk dependency. SMH...
My own aunt is 85 years old and has taken ativan for decades. She takes it as needed. Get your mother back on it.
As for her insomnia, how about she goes to sleep when she's tired? She doesn't have to live by a clock. She doesn't have to get up and go to a job every day at a certain time. She doesn't have to be up to get kids off to school. She can sleep whenever she wants and should.
Here's the thing about insomnia and not being able to sleep. A person can only stay up for so long and then they will sleep whether they have insomnia or not.
She may very well not have dementia. The medical community always assumes dementia when a person is old. Your mother has been pumped full of mind-altering drugs so incoherent and lunatic behavior happens all the time with many drugs.
You say your mom was doing all right until she was put on klonopin. Even when weaned off these kinds of drugs they have lasting side effects that can linger on and on.
Was your mother a psychotic? A person's condition does not go from being well managed with a little ativan to a psychosis needing klonopin. They made a mistake. You should be speaking to a medical malpractice lawyer on her behalf and explain this situation to them.
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Nandulal Dec 2021
Thank you for reply, yes both my mother and I have had psychotic episodes in the past. mental illness runs in the family. It was my understanding that ativan was the least dangerous of all the benzos, and although I'd love it if she didn't need to dependent on ativan, it was better than the alternative: continued decline and suffering due to insomnia and anxiety. I thought 1 mg of ativan was a low dose and would not have severe consequences. Even if she was dependent on it the rest of her life, so be it. People get old, they suffer, they die. At some point a healthy, sober lifestyle is no longer possible, and the bar is set lower to focus on managing pain. She was in so much pain, and the ativan gave her relief.

My brother, her older son does not agree, and first insisted she stop taking ativan, then insisted she switch to klonopin. We are both playing doctor and have different opinions and it has caused a major rift between us.
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Klonopin is not an anti-psychotic.

My mother found it a much better med than Xanax.
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BurntCaregiver Dec 2021
BarbBrooklyn,

Some people have a terrible time on xanax. I took xanax one time and totally freaked out on it.
I have never known an elderly person who was put on klonopin and had a good experience with it.
No one whose mental conditions are being managed well with a low dose of ativan needs to be put on klonopin.
It's like this, if a person has a case of poison ivy and their itching is well managed with some calamine lotion or steroid cream, should that treatment be stopped in favor of a skin graft?
No, it shouldn't. Klonopin is used to treat psychosis. This drug alters brain chemistry. Ativan is a gentle benzo that works on a person's nervous system. It's the lesser risk of the two.
My aunt's doctor tried to get her to switch from ativan to klonopin. She went to another doctor.
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