Severe cognitive impairment

[[Me...]]

My sister was a long term user of Valium, mogadon and opiates (prescribed for migraines). Seven months ago she went cold turkey without telling anyone. She immediately started displaying signs of severe confusion, memory loss and cognitive impairment. After several months this would alternate with periods of mania and even violence. At first the doctors thought it was drug induced dementia but the fluctuating course of her symptoms led to that being discounted. We have had numerous hospital admissions and every test known to the medical profession, with no clear diagnosis.

 

She is now being held as an involuntary patient in a psychiatric ward while the doctors try a variety of medications and argue about what it is. She is so cognitively impaired she cannot care for herself. As she had no previous psychiatric history (she is 55) and the only triggering event was the cessation of her drug use, it would appear to be a protracted benzo withdrawal syndrome.

 

As you can imagine, this has been a living nightmare which has torn our family apart.  Has anyone else come across this level of disturbance? If so, has anyone ever seen it improve or even resolve?

 

 

[[Bl...]]

This is a common side effect of benzo withdrawal, especially when cut cold turkey. It can last a long time and I'm sure the other drugs didn't help the situation.

 

Do you know how long she was on valium and what her dose was?

 

Also, in involuntary psych hospitals they typically force benzodiazepines onto patients which will make her 1000x worse. I would HIGHLY recommend speaking to the doctors there and explaining that to them right away.

[Guest [Mi...]]

I'm sorry this happened to your sister, MelbourneGemini.

 

She's lucky to have you as her advocate. Yes, the symptoms you're describing are withdrawal effects, especially from a cold turkey after long term use.

 

I did a rapid taper off of long term Klonopin use and came off last June. It's 10 months later and I'm still having cognitive difficulties.

 

One of our members, Parker, wrote this post and it's an excellent source of information: What is happening in your brain?

 

Do you know if the doctors reinstated her back on Valium? Unfortunately, when doctors start polymedicating people for benzo withdrawal, it can cause even more problems.

 

Please talk to her doctor about benzo withdrawal. Perhaps print out a copy of the Ashton Manual - The Ashton Manual

 

If they did reinstate her on Valium, you may wish to advocate for her to do a very slower titration off.

 

Also, you mentioned she was having mania and violence. Doctors like to diagnose people with these types of mood swings as bipolar. Since she doesn't have a prior history of mental illness and she's 55, she's not likely to be bipolar.

 

Bipolar tends to strike people who are under 30. This really does sound like a classic case of benzo withdrawal.

 

[[Au...]]

When Iwent cold turkey i felt like I had a serious brain injury. I had almost zero cognitive ability. It was horrible. I can't imagine what your sister is going through. She needs to find a doc that is up on benzo withdrawal. Maybe you could call around and find one in your area and get her under their care.

[[au...]]

Hi there MelbourneGemini,

 

If you are in Melbourne Australia, I may be able to direct you to some places of support and information. 

 

Cheers

 

Aussiegal.

[[Ch...]]

It would seem by the timeline and symptoms that Valium withdrawal is the most likely cause of these symptoms if she had no pre-existing issues like this. 

 

I'm just going to throw this out there and many will disagree with this, but if she's this severely affected, have you or her doctors given thought to reinstating just the Valium instead of trying a sequence of different psych drugs?

 

If this is Valium withdrawal, a full (or more) reinstatement may bring her completely out of it and allow her to slowly taper off the Valium.  This being said, no one can accurately predict how a reinstatement might or might not work.  It's a gamble.

 

Just my two cents.  It might be worth a try.  It could also make things worse, one never knows because each person reacts differently.

 

I'm so sorry your family and sister are going through this.

[[Ke...]]

If you are in Melbourne Australia contact reconnexion. They have a program for people in withdrawal and are REALLY well informed. They acknowledge withdrawal can last for several months or even years and provide really good advice and support.

http://www.reconnexion.org.au/about-us/w1/i1023414/

 

[[au...]]

Hi there MelbourneGemini,

 

If you are in Melbourne Australia, I may be able to direct you to some places of support and information. 

 

Cheers

 

Aussiegal.

 

May also be able to direct you to a benzo wise Dr 

[[Br...]]

My sister was a long term user of Valium, mogadon and opiates (prescribed for migraines). Seven months ago she went cold turkey without telling anyone. She immediately started displaying signs of severe confusion, memory loss and cognitive impairment. After several months this would alternate with periods of mania and even violence. At first the doctors thought it was drug induced dementia but the fluctuating course of her symptoms led to that being discounted. We have had numerous hospital admissions and every test known to the medical profession, with no clear diagnosis.

 

She is now being held as an involuntary patient in a psychiatric ward while the doctors try a variety of medications and argue about what it is. She is so cognitively impaired she cannot care for herself. As she had no previous psychiatric history (she is 55) and the only triggering event was the cessation of her drug use, it would appear to be a protracted benzo withdrawal syndrome.

 

As you can imagine, this has been a living nightmare which has torn our family apart. Has anyone else come across this level of disturbance? If so, has anyone ever seen it improve or even resolve?

 

Hello MG. In benzo withdrawal such a severe state is usually transient. Opiate withdrawal can also cause this so don't overlook that factor. There is a lot of non-standard terms used for this and the diagnosis of "drug induced dementia" seems correct although in this case it is likely to be specifically due to withdrawal ("substance withdrawal delirium"). It can be an idea to avoid the term "dementia" because not everybody means exactly the same thing when they use it.

 

You mention "confusion", "cognitive impairment", "alternating periods of mania", "fluctuation" which are all characteristic of substance withdrawal delirium and which you will find in any textbook definition.

 

I'm sure the docs have tried various neuroleptics (haloperidol, etc) to relieve the worst of the symptoms while they work out how to deal with the causes. The neuroleptics are effective but bring their own side effects and long term habituation, so they are only a short term solution.

 

As she is in a psych ward it may be worth making sure there is good co-ordination with other non-psych specialties because there are usually several factors involved in delirium (such as hypoxia, infection, electrolytes, hepatic, etc) to cause such a severe protracted state. I had this and it took several years and a high degree of medical suspicion to eventually track down the true causes.

 

I am really sorry to hear your sister is experiencing this as it is extremely unpleasant.

 

 

 

 

[[Mo...]]

My sister was a long term user of Valium, mogadon and opiates (prescribed for migraines). Seven months ago she went cold turkey without telling anyone. She immediately started displaying signs of severe confusion, memory loss and cognitive impairment. After several months this would alternate with periods of mania and even violence. At first the doctors thought it was drug induced dementia but the fluctuating course of her symptoms led to that being discounted. We have had numerous hospital admissions and every test known to the medical profession, with no clear diagnosis.

 

She is now being held as an involuntary patient in a psychiatric ward while the doctors try a variety of medications and argue about what it is. She is so cognitively impaired she cannot care for herself. As she had no previous psychiatric history (she is 55) and the only triggering event was the cessation of her drug use, it would appear to be a protracted benzo withdrawal syndrome.

 

As you can imagine, this has been a living nightmare which has torn our family apart.  Has anyone else come across this level of disturbance? If so, has anyone ever seen it improve or even resolve?

 

Hi , I am so sorry this happened...so sorry indeed.

Benzos are very serious buisness, majority of Doctors around the world

are clueless. Getting off cold turkey the way your sister did,

can bring King Kong to his knees, believe me .....I know what I'm

talking about.

 

You and your family must be smart now....

 

If I were you I would get in touch with aussiegal immediately,

she has a competent Specialist on board who will advise you.

 

here is some info to give you an idea what its all about.

http://www.benzobuddies.org/forum/index.php?topic=66397.0

 

http://www.benzo-case-japan.com/index-english.php

 

some tapering info.

http://www.benzobuddies.org/forum/index.php?topic=9522.0

 

Good luck , I hope you can get your sister out of  Hospital as soon as

possible , may she get the right treatment needed by a Benzo wise Doctor.

 

[[Me...]]

Thanks everyone. The doctors did put her back on a moderate dose of Valium and then did a taper. She has been benzo free for about 2 months now, which I know isn't that long. The scary thing is that her cognitive impairment and memory loss has now been present for 7 months (she cannot operate a TV, prepare a meal etc). On really bad days, she cannot shower or dress herself, and has had periods of incontinence.

 

She was an inpatient in a psych ward until 5 days ago, but she was getting worse by the day so her partner took her home. The idiot in charge of her treatment diagnosed her with a raft of psychiatric disorders so absurd and improbable that if it hadn't been so dreadful I would have laughed (disassociative amnesia, major depressive episode and avoidant personality anyone?). When I said that I thought it was a withdrawal syndrome as there was no other triggering event, and she was symptom free before the withdrawal,  he dismissed it out of hand, and told me to stop arguing with him. Hard to believe this approach exists at the Royal Melbourne Hospital in 2015. We removed her just before they were going to try ECT.

[Guest [Mi...]]

Thanks everyone. The doctors did put her back on a moderate dose of Valium and then did a taper. She has been benzo free for about 2 months now, which I know isn't that long. The scary thing is that her cognitive impairment and memory loss has now been present for 7 months (she cannot operate a TV, prepare a meal etc). On really bad days, she cannot shower or dress herself, and has had periods of incontinence.

 

She was an inpatient in a psych ward until 5 days ago, but she was getting worse by the day so her partner took her home. The idiot in charge of her treatment diagnosed her with a raft of psychiatric disorders so absurd and improbable that if it hadn't been so dreadful I would have laughed (disassociative amnesia, major depressive episode and avoidant personality anyone?). When I said that I thought it was a withdrawal syndrome as there was no other triggering event, and she was symptom free before the withdrawal,  he dismissed it out of hand, and told me to stop arguing with him. Hard to believe this approach exists at the Royal Melbourne Hospital in 2015. We removed her just before they were going to try ECT.

 

Melbourne, your sister is so lucky to have you. It is unreal to think they were going to subject her to ECT.

 

I'm really sorry you're sister is suffering so much. I hope she feels better soon.

[[on...]]

Also, I'd see her as much as possible and let her know she has your support.  I cut myself from a huge dose of X down to what is reasonable and then checked into the hospital because I felt like I was in medical trouble.  Actually the staff where I was was very good.

 

But, I couldn't handle the isolation.  It seems that if you have a heart attack (not making light of this) all your friends and family come running.

 

But if it involves addiction or mental health issues I think there are times they just don't know how to communicate because they don't know what to say to you.  This was a really difficult thing for me to take.  I don't spend lots of time on the PC, but all my friends stopped copying me on emails (probably because they didn't know what to say), and family members seem to still shy away from me.

 

I say just be sure to give her lots of support and let her know you are behind her.  Even after this trouble is over.

[[Th...]]

Hi MG,

 

You have already got so much goods advice from other Budddies. Just to let you know, my wife has basically had the same thing happen to her up here in Sydney. For the last 4 years I have been helping J with this problem and have gone through the whole gambit of hospitals, psychiatrists, doctors, etc etc.

 

The symptoms you described, I have witnessed first hand. I have no doubt that what J has gone through is all related to her taking these drugs. She is currently 2 weeks post a 2 years taper, where she went really slow. She is one of those unfortunate ones, that tapering slowly didn't make much difference. I guess the only difference was that the whole process was manageable compared to spiralling out of control.

 

I know that this hell will end. I take it one day at a time and continue to help J get out of this mess.

 

The Rock.

 

[[Me...]]

Hey The Rock,

 

Did your partner also develop aggression? If so, did you discover anything that helped?

 

Also, did you find any doctors who understood what was going on? The psychiatrist who treated my sister was so unhelpful. Not sure whether to find a different psych or give up on that part of the profession altogether.

 

MG

[[Th...]]

Hi MG,

 

If you knew my wife, you would clearly understand that she doesn't have an aggressive bone in her body. In all the 26 years that we've been married i rarely remember her swearing. But there was a time during her taper, that she was very aggressive, confrontational & abusive. Because I was here caring for her, the majority of the outbursts were directed to me. She also found fault in people even ringing our home phone. I won't go into further details, but let me say, that if I had not known that it was a symptom of benzo withdrawal, I would have abandoned ship, quick smart.

 

What I did on most occasions was simply ignore what was happening and in a short period of time the tantram would subside. Only on a few occasions did I confront her during the tantram. I quickly learnt that it didn't help to do that. Something that surprised me was that I would question her on what happened after the event, and J would have very little recollection of what happened or she would say something like, "I couldn't help it, it just came out".

 

This is the nature of this problem. If a doctor was to see or hear such behavior, they would have pumped her with a dozen pills. This is why I did my best to keep J away from doctors & psychiatrists once I understood the problem. It is a significant responsibility to have taken control of her health, but a decision which I know now that probably saved my wife a lifetime of misery.

 

The Rock.

[[Br...]]

Did your partner also develop aggression? If so, did you discover anything that helped?

 

Also, did you find any doctors who understood what was going on? The psychiatrist who treated my sister was so unhelpful. Not sure whether to find a different psych or give up on that part of the profession altogether.

 

Aggression is common in withdrawal delirium.  Conversely, other patients become very withdrawn and these are usually harder to diagnose as they may get seen as being depressed.

 

It's possible your wife's psychiatrists are not looking at any causes other than psychological disturbance but liaison psychiatry should take a bigger picture into account and may be a better place to start.  Even geriatric psychiatry may be worth considering (irrespective of your wife's age) as they also deal with her sort of presentation and they would not automatically assume dementia.

 

I'm sorry you're having so much trouble with the professionals.