New Med Protocol

Just Bill

Well we saw the neurologist today. It has been a long white knuckler of a month dealing with DW's hallucinations, delusions, and psychotic anger episodes. I filled the doctor in on all her symptoms then just let her talk and the doctor listen so between my assessment and his observations of her behavior. We have some new meds and a new protocol: Memantine and Zyprexa. So AM: Lamotrigine, Effexor, Zyprexa and Memantine and PM: Aricept, Ambien, Seroquel, and Memantine. I'm waiting untill 11 and the prescription will be ready I'll give her a Zyprexa and a Memantine and call it her morning dose. In engineering this is called plug it in and see what happens. If it starts on fire unplug it. Lets hope the hallucinations go away instead.

Faith,Hope,Love

I pray it all goes well for you and DW.  Keep us posted.

Joydean

I too hope and pray everything goes smoothly for you and your dear wife. Best of luck!

jfkoc

That is a lot of meds at work. Do check for interactions so that you can be aware of them if they happen...

Do let us know how it goes.

clndaniels

My DH with ALZ has been experiencing some sudden anger outburst episodes and hallucinations. He has been on lexapro for many years. The neurologist has now prescribed divalproex with the addition of adivan at night if needed.  I see some calming but not great. Still experiencing some outbursts with cursing.

M1

That is a hell of a cocktail Bill.  Like jfkoc, I would worry about interactions/duplications/side effects.  With that many psychotropic meds on board, it would be hard to tell what is doing what.  Have you thought about trying to get a psych consult and/or have her admitted for evaluation?

Just Bill

I do have an appointment scheduled with a geriatric psychiatrist that specializes in dementia specifically to cross examine the med protocol. I am just waiting my turn in line.

ImMaggieMae

Wow, that a lot of stuff to combine. I echo M1’s concerns that it would be hard to tell which is doing what if something happened one way or the other.

towhee

I agree, that is a lot. Did the doctor mention tapering a med off at some point? I would be calling that geriatric psychiatrist several times a week to see if there were any cancellations so you could get in sooner.

About Memantine, that med is supposed to be increased gradually starting with 5mg once a day, increasing by 5mg at an interval of one week or more. If you increase it too fast your chances of side effects go up, and one of those possible side effects is strong hallucinations with anger and fear. Been there, that is not fun, and this was with no previous hallucinations.  

Ed1937

Bill, in case you didn't know, you can go to drugs.com to check side effects easily. And you can save your medication list if you want. There are probably other sites, but that's the one I use.

Just Bill

She is tormented by her hallucinations. They have to stop. Her symptoms are worse than all the side effects of her meds combined. She has tremendous energy levels, the meds hardly slow her down. When using anti-psychotics what is better ? : a) Keep increasing the dose of one type until you see results. or b) Use smaller doses of different types until you see results.  I don't know. All I know is her hallucinations absolutely positively have to stop no matter what. It is a quality of life call I have to live with. I monitor her closely for both positive and negative side effects. This drug thing isn't an exact science. Seeing your loved one in pain makes you willing to try anything to give them relief. If the doctor said give her 2 goat turds every morning I would try it. If it improved my golf game I would try it too.

M1

Bill, at this point you don't know if some of the meds are not making things worse instead of better.  But withdrawing some--like the venlafaxine, for instance--has to be done in a controlled fashion, not abruptly, as that could also make things worse.  I really think you ought to pursue getting her admitted sadly.  Our psych hospitalization was a disaster, so I don't say that lightly, but sometimes there is no other choice.

storycrafter

This may already have been addressed, but I put it out there for consideration in case it hasn't:

"Therapeutic dose" is a term the psychiatrist used when consulting about meds adjustment. In my husband's case, the doctor said he needed to be at a level that was considered a therapeutic dose for the particular drug, in order to fully evaluate its benefits. He further said, a lower dose could help somewhat, but it wouldn't provide optimum benefits.

Another time I was told by a psychologist that a dose of anti-depressant that seems to lose effect over time is probably not at a therapeutic level for the person. Once the level was reached it would continue with steady benefits.

Of course it's not an exact science because everyone's body and situation is different.

There's a lot of trial and error when it comes to meds and it takes time to sort it out. I hope your wife soon receives the help she needs and finds relief from troublesome symptoms.

M1

Bill for what it's worth, I have a professional drug interactions program (Lexicomp, on Up To Date) and I plugged in her meds--they rate interactions on five levels, A (none) through X (discontinue).  C is "monitor," D is "consider therapy modification."  I plugged your wife's cocktail in out of curiosity--got three D interactions, all indicating that Ambien should likey not be given with Zyprexa, Seroquel, and lamotrigine.  No X interactions, but too many C-levels to count.  Don't know if that helps.

Just Bill

Hello M1 I appreciate your experience and insight. Out of curiosity what would an alternate med protocol look like based on her symptoms ? She had epilepsy before her dementia diagnosis so lamotrigine was prescribed about 8 years prior. Next at her diagnosis she was prescribed Aricept. Not long after she got very depressed, obsessed with death and dying. This is when the hallucinations and psychotic episodes started. She was prescribed Effexor and it worked for a while but her symptoms kept escalating. She started getting up at 2 in the morning delusional and angry. That is when she was prescribed Ambien. That was great, sleeping through the night was good for both of us. With the added sleep her symptoms seemed to subside a little. Then progressively her symptoms came back with progressive intensity. She was then prescribed seroquel and that worked for a while and then her symptoms came back bigger, stronger, faster, and smarter than before. That is where we are now with the zyprexxa and memantine. She has been on this protocol since Thursday and her anger is gone and her hallucinations are diminishing.  I have observed no negative side effects as of yet. And how would I tell the the difference between a med side effect and a symptom of aggressively progressive dementia ? So in your professional opinion what would be an alternative cocktail ? The symptoms to eliminate are: Hallucinations, delusions and anger, sleeplessness, and depression ? With minimal side effects. Please do not be offended with my questions I am humbly asking what would be an alternative. And if her current cocktail works, what would I replace it with to get the same results ? Again I mean no disrespect or arrogance but I am curious about your thought process from a doctors perspective. How would you match drugs to symptoms ? 

Jo C.

Bill, when reading the list of drugs, I too feel concern.  That is truly a pretty heavy drug treatment approach.  You have listed all of the drugs that are prescribed for her dementia, but is she also on other meds for other conditions?  Did your wife have any existing mental health issues prior to the onset of dementia?  Has anyone mentioned dementia induced psychosis to you?

This terribly overwhelming situation and the number of meds all with possible really significant side effects can give one pause for great concern.  What I have seen happen in some instances is that many drugs can interact, they all have side effects and  even more convoluted side effects can come into play with polypharmacy use, or may even possibly be contributing to or causing some or many of the behavioral symptoms and then there may be more meds prescribed to deal with the side effects which actually causes more side effects and interactions to occur; that type of situation can be a slide into chaos if not extremely cautious.

We think of Aricept as an innocuous drug.  It can sometimes slow the speed of advancement of dementia for some people for a limited period of time. However; keep scrolling down and look at all of the possible side effects of this drug from depression to mood disorder, agitation, etc., and that is only one drug.  Couple that with all the other drugs - it is truly confusing as to which is doing what and all together . . . Ambien also raises a question that is concerning.  I wonder if the Neurologist was aware of and recalled the already existing meds before he/she precribed new ones?

https://www.webmd.com/drugs/2/drug-14335/aricept-oral/details/list-sideeffects

Never, ever stop a drug cold turkey; many of them require tapering to avoid highly negative outcomes.  A physician will be the guide for this and ONLY a physician should do this with oversight.  We may mean well, but if we are not cautious we can cause avoidable problem issues by forging ahead with ceasing drugs ourselves.

QUESTION: What type of dementia does your wife have?  I ask this because your focus is on the florid hallucinations which seem to be driving much of the behaviors. I wonder if she needs a good review of dementia type to ensure that the treatment is what is appropropriate. The type of dementia most addressing hallucinations which are florid and persistant, is Lewy Bodies Dementia. In LBD, many of the usual dementia meds are often contraindicated as LBD is not only resistant to them, but for some patients, can make things even worse.  

What can you do?  Well; I can only address if this were me. What I would want would be a second opinion, and I would more than likely use a Geriatric Psychiatrist as that second person.   I would also, in all probability due to the extreme nature of the behaviors, would figure it is necessary to have 24 hour continuum assessment and an entire treatment management done in a controlled environment setting that can address this best, and that would be an admission to a GeriPsych setting.  If one has a Geriatric Psychiatrist who has admitting privileges at the  GeriPsych Inpatient Unit, you would have a continuity of care during the hospitalization.

If we are being driven to absolute distraction by our LOs behaviors, imagine what it must be like for them not only believing all the delusions and hallucinations that are whirling about inside their head, but also FEELING it and they cannot escape.  I can only imagine how extremely absolutely hellish that must be.  We must be the ones to find them relief as they cannot do it themselves. In this situation, as said, if it were me, I would opt for a Geriatric Psychiatrist and make an appointment on an "emergency" basis so we could be seen faster, and then request admission to GeroPsych Inpatient status so drugs can be effectively and safely tapered as necessary under 24 hour monitoring and a new treatment plan that is effective can be put into place and she can be observed not only for effectiveness of the meds, but also for side effects.  I would also request that her diagnosis for type of dementia be confirmed - that is crucial to all else.

If totally out of control and worsening, there is always the ER at a hospital with a Geriatric Psych Unit and have her admitted through that venue.  If you do not have a Geriatric Psychiatrist, one would be assigned to accept the patient.

I am truly sorry for both of you that this is happening; it must not only be overwhelming, but exhausting.   There is help to be had, but it will mean that once more you will have to be the one to make the calls and arrange what needs be.

Let us know how you are and how your wife is and how things are going; we are here and we truly do care.

J.

French

Wahou ! Lot of meds as my partner had. Strange to have Seroquel & zyprexa, two neuroleptics.

My partner also has terrible delusions. Now he is only on quetiapine and shout the whole day. He is terrified. I can’t know what is so terrible.

Just Bill

Jo C. thank you so much for your experience and compassion. DW has central and cortical atrophy. I guess generic brain shrinkage. I have a geriatric psychiatrist that specializes in dementia we are waiting for an appointment. She went from memory loss and cognitive impairment right to hallucinations, delusions, and psychotic anger episodes at a pretty fast pace. Her diagnosis was 4/21. She went from me being able to leave her alone for 4-6 hours to me having to monitor her 24/7. She is slipping fast with or without meds it seems. The bright side is right now in this moment she is doing great. All negative symptoms are gone. No anger, no hallucinations, her mind isn't as thick she seems more mentally alert, and more importantly she is happy. I have to bear the weight of making a quality of life over potential negative side effect decision and live with the consequences. My goal is to give her the most quality of life with the least risk. It takes weeks and months to see doctors. I had a hell of a time finding a geriatric psychiatrist. The drill is make an appointment and wait. That is what we do a lot of is wait for doctor appointments. Day to day existence is slowly watching my wife lose her faculties and drift into madness. I have to put some faith in her neurologist as he is the one prescribing meds every time I call him telling him about another benchmark in her mental descent. The side effects of all those meds keeps me up at night but so does having a ringside seat to her slow death. If there were a gummy I could give her that would eliminate her symptoms and gave her happiness with zero side effects I would make whatever sacrifice to get it. Again right now in this moment she is the happiest she has been in months. She has mental clarity she hasn't experienced in months. I am very happy about the results but that doesn't mean I'm still not carrying around the anxiety of the side effects. If there is a safer way to do this I will find it. Thank you all for your concern I truly appreciate it.

M1

Bill, thank you for the compliment; I wouldn't begin to presume to suggest alternatives without actually seeing someone and knowing the complete history, and having examined the individual.  It's certainly good that you're seeing some improvement, hard to argue with that bottom line--but you don't know how long it will last, of course.  I hope you can get in to the geriatric psychiatrist quickly, that will give you your second opinion at the very least.  I second everything Jo has written, too, and I do think she would likely be best served by an inpatient stay.  "simplifying" her regimen is likely possible and almost certainly desirable, but that would mean discontinuing some of the things she is taking, and both starting and stopping meds is best done in a controlled environment.

ImMaggieMae

Bill, I just reread your initial post. Your wife had already been taking all of the medications except for the Memantine and Zyprexa? I initially thought most of those meds were new. FWIW, after my dh’s first ER visit and a week in the hospital to adjust meds, he was prescribed Risperidone .5mg along with the Memantine 5mg twice a day that he had already been taking and Zyprexa only if needed. I never needed to add the Zyprexa. It was a hospital psychiatrist that prescribed those. So it apparently isn’t that unusual to have two antipsychotics prescribed. 

Is she taking all of those meds now and doing well with them? I agree that greater mental clarity and fewer symptoms is important. I worry about my DH taking the Risperidone and Memantine too, but getting rid of most of the dementia repetitive behaviors and seeing a good increase in mental clarity has to be weighed against the risk. His quality of life is so much better than it was before. Seeing him up dancing with our friends in our family room this weekend and playing dueling ‘air guitars’ to Queen with his buddy is something that I would have thought impossible a few months ago. Seeing him laugh again seems incredible. It wouldn’t be possible without these medications. 

 Please keep us updated on how she’s doing and what the other doctor has to say.

Jo C.

Hello Bill, it is good news that your wife has had some improvement with the new medication approach. 

As for the appointment, so often over the years of dementia, I too experienced many times we had to wait quite a few weeks to a couple of months for an appointment. Then I tried to work around that and persisted.  (Puff, puff, pant pant.)

When making an appointment; I would honestly provide the symptoms BUT I would be a bit overblown in presentation at the risks and upheaval as well as being somewhat unsafe . . . uncontrollable was a word used as well as the patient suffering, and it was accurate.  That often got us an earlier "urgent" appointment.  I would never have done this if it was not a truely serious situation.   Once, I bypassed the young appointment clerk who did not seem connected and asked to speak to the licensed nurse at the office. I detail related the situation to that person and asked if Doctor did not have a cancellation or did he keep a spot or two open each day for emergency or urgent matters. That got us an appointment within two days due to the severity of need .  What a huge relief.

Other times I asked to speak to the Office Manager and the Appointment Clerk; I let them know the issues and asked to be put on a waiting list for the first cancellation to come up.

Then I became a polite, nice pest.  I called each morning around 10:00 am to check and find out if anyone had called in to cancel an appointment earlier than ours was scheduled for and always expressed my thanks for their support. That worked a couple of times.

We did at one point, due to behaviors have to use Geriatric Psych Inpatient care and it would not have mattered how far away it was; it was really necessary as everything was out of control, over the moon and  approached dangerous and it carried on 24/7.  It was a horrible decision to have to make, but truly necessary.  Controlled environment with structure and routine and professionals for assessment and care.   Initially it was for that 72 hour involuntary hold, but we had extensions due to additional care being medically  necessary.  Length of stay was a bit over two weeks.

This is not an easy trail to travel; it often is one big challenge after another which somehow we keep managing to deal with.   You are doing the best you can under the circumstances with the challenges you are personally facing.   It will come to a successful outcome, but how it gets there may be a bit dodgy getting from one point to another.  You are doing a good job of it all in the worst of circumstances, you really are to be commended for your care and for being such a good advocate for your dear wife; she is blessed to have you by her side.

Best wishes are being sent your way,

J.

J.