Antipsychotic to eliminate headache complaint. 🤐
I am a long distance secondary caregiver. Unable to become primary due to current life circumstances. Just found out Mom's PCP (2021-2026) requested autho for starting Mom on Rexulti. Given that mom has been battling with headaches ever since she started visiting doctors for routine check up after a diagnosis of brain shrinkage! This daily headache symptom along extreme dizziness has always been dismissed as cognitive decline due to brain shrinkage. NOW ....it seems they have escalated brain shrinkage to headaches due to psychosis!! (Invisible since no one has witnessed it...) Mom has zero agitation, she is as has been for all of her life. An assertive mother. Now whenever she has a mood outburst, my siblings check off a mark: AD crescendo. That was stressful enough but now even PCP is promoting NATURAL DETERIORATION as a CLEAR CUT diagnosis and prognosis. Throughout her journey this PCP has been pushing for psych meds. Just because she complains about extreme headaches and dizziness bad enough to have to hold on to walls. My sibling is the primary caregiver and upon witnessing this stated that most likely is AD because they find nothing else wrong. But....it is because the most obvious is being overlooked: her BP meds and constant anxiolitic then antidepressive.... then another one always saying it's for her headaches. Stop one then try other ...and on and on...she has been put on Amitryptilyne, Mirtazapine, Escilopram ....and tried specific meds for migraine as well....to no avail. Her headaches are in response to something she is taking daily. Why is it that no one tries out the obvious? Primary caregiver is ignorant but PCP? Neurologist? Cardiologist? Primary caregiver simply tells me: all doctors say the same thing. She also believes I am under denial.
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That clearly if no one finds anything causing the headaches it means it stems from ALZ.
Did not review nor consider polipharmacy.
Just focused consult on pushing meds.
Suggested NAMZARIC and explained it in no way HALTS THE PROGRESSION.
That it is just so person can pass the day in the present with presence. Which is odd she feels Mom is absent since she IS present. Just that she doesn't speak English.
So neuro explained Namzeric may help people with AD BE more present every day they take it.
She also told her the cost it would be costly and they could try other costly meds as well. Neuro asked my sister if Mom or the family had solvency she would write out some costly RX's.
When she went for exam was one person. Once she came out with diagnosis....her life changed for the worse.
Rexulti is notorious for causing headaches!
Idk what you can accomplish from afar, but maybe you can go for a visit and get thru to your sibling that a PCP is not qualified to treat an AD patient. She needs a neurologist who'll do a med review and perhaps take her off all meds for awhile to see if she improves. Plus, you will get to see what a "mood outburst" looks like up close and personal. An "assertive mom" with AD may have morphed into someone quite different these days.
I wish you good luck and Godspeed with a difficult situation.
If Rexulti is notorious for causing headaches why did PCP reccomend it as a solution for her complaints?
Mom returning for the 12th or more time with same complaint of extreme headache, tremors and dizziness enough to make her hold on to the wall to get back to her bed is prescribed something to make her .....be quiet?? Not express pain??
I am so disappointed at professional medical doctors who are failing the patient and helping the assistant, to keep my mom quiet with Uber psych cocktails risking her life.
She is a poised lady as usual. I believe she is being discriminated because of the AD LABEL. I don't believe she is anywhere close to being a psychiatric case. Discrimination starts from within the family. It is easier to get to her with her cognitive decline which is barely noticeable than to my healthy brained sister. Today I had a disastrous conversation with her. She told me it is most important for her that my mother be tranquil. It is so frightening to me.
Had Medicare Not denied authorization for black box psych meds, my sister would be already dispensing them like daily vitamins regardless of Mom's reaction which I can only assume would have been extremely bad since she has zero agitation: maybe she would have been knocked out immediately and be quiet in bed all day and my sis would call and tell me "See....she is cured, she has slept all day"
Even I, not being a medical doctor reading the prerequisites of Rexulti, I would not have dared submit the request for approval in fear of being held accountable for patients demise.
BUT... you don't seem to have any real power to change anything except if your sister resigned as primary agent and you were willing to do the work to get your Mom's headaches dealt with. One solution is to have your sister resign her PoA and then you relocate your Mom local to you. If you aren't going to do this then I'm not sure circling the drain around her medical care will do you, or anyone, any good. I'm so sorry for this frustrating situation, I wish you peace in your heart.
If you are a "long distance secondary caregiver" are your siblings the ones with "boots on the ground" so to speak? That is, are they the ones giving care of mom in person?
When was the last time you, yourself, witnessed your mother's behavior ***in person***?
Maybe you need to go and spend a few weeks doing hands-on care of mom, and see for yourself, firsthand, exactly what mom's health and behavior have become; that might put a different spin on your opinions of mom's medication.
Because what is going to definitely happen here is your siblings are going to get mighty sick of you questioning every decision long distance, while not offering any real solutions that YOU can do. Ordering them to take mom to all sorts of different doctors is probably not helpful in this case; my mom's cardiologist called that "muddying the waters".
If one of my siblings had done this to me while I was the primary (and by primary, I mean the only) caregiver of my mom, I would have stopped giving them ANY updates about my mother and her health. I would have told them if they were interested, they should come and see for themselves. This is one of those times where if you're not a part of the solution, then you're probably a part of the problem.
Living far away with travel limited by the pandemic, I didn't grasp how much of a decline there had been in one of my family members until I was able to go in person. Hearing descriptions of symptoms and episodes in brief phone calls was different from seeing and hearing the overall impact in person.
There are some very unwanted side effects! And switching meds so frequently sounds careless! It takes a while for the body to respond to one medication, and needs to be titrated when stopping or starting a new medication.
My husband with vascular dementia was put on a couple different anti-psych meds, in an attempt to ease his agitation. He developed a side effect of tardive-dyskenesia, moving his arm up and down, and then his head from side to side.
And, the medication did nothing to ease his agitation. There was no benefit. I told the prescriber we were going to stop using anti-psych meds.
I don't know much about treating headaches or what could be causing your mom's. There is a lot of good advice here about finding an appropriate specialist to review the medications and treat the cause of her headaches.
I've heard there are some new medication treatments for Migraines, if that would help her. And, I'm also wondering if she is dehydrated, or has an imbalance of vitamins, minerals, or electrolytes, which could also cause headaches. Other easily treatable or preventable causes are strained vision, and tension in the neck or jaw.
You will need to speak out and advocate for your mother. Hopefully you and your sister have a good relationship and can get on the same page, so she can take steps to find more appropriate care.
DrLizGeriatrics