Elderly mother in law hallucinating: is it dementia, or adverse drug reaction to antihistamines, alendronic acid??

[mostlylurking]

I know there's things that can be *done*, but I doubt there's much that we will be able to *do* in that I doubt they'll believe us if we brought it up, even if we showed them stuff etc if it's not on the BBC it's not true. Worth a shot though, we will try to somehow add it to her daily afternoon coffee concoction, if that's even possible.

Coffee blocks thiamine. Sugar depletes thiamine and can exacerbate a deficiency. Methylene Blue is an MAO inhibitor.

Methylene Blue - StatPearls - NCBI Bookshelf

"Methylene blue is a safe drug at a therapeutic dose of <2 mg/kg; however, when levels are >7 mg/kg, many of the adverse effects it exhibits will occur.[2] Serotonin syndrome has been found to occur when combining serotonergic agents with methylene blue at a dose of 5 mg/kg.[19] Methylene blue use also requires caution in patients with renal failure due to its ability to reduce renal blood flow.[2] Also, as noted in adverse effects, patients taking any drug with serotonergic activity such as SSRIs should avoid the administration of methylene blue due to the risk of serotonin syndrome.
Go to:

Toxicity​

The research concludes that there has been no antidote for treating methylene blue toxicity to be found to exist. If anaphylaxis does occur, the administration of methylene blue should stop immediately and promptly follow by supportive care, although severe anaphylactic shock with methylene blue is quite rare. Methylene blue may become potentially fatal when used in combination with medications that include or increase serotonin; this is because of its monoamine oxidase inhibiting properties. It may precipitate serotonin toxicity at doses of >5 mg/kg."
-end paste-

Please note that the bisphosphonate drug (alendronic acid) your mother-in-law is taking can also stress the kidneys. Poor Kidney function can cause dementia symptoms.

 

[Lydie Baillie]

Very sad situation indeed, to see a loved one suffering and have no means to alleviate that hurt. I see it in older family members, but I don't live with them. Your situation makes it very stressful on a daily basis. Perhaps you all could request to speak with her GP and ask if it is possible, in light of your, your husband and FIL observations over the past couple months, to reduce the dosage or prescribe an alternate treatment, wonder aloud in speaking with the GP if any supplements or foods may be of help for her thyroid condition. Depending on how compassionate the GP is feeling, he may provide some relief this way.

 

[messylttlfoodie]

Coffee blocks thiamine. Sugar depletes thiamine and can exacerbate a deficiency. Methylene Blue is an MAO inhibitor.

Methylene Blue - StatPearls - NCBI Bookshelf

"Methylene blue is a safe drug at a therapeutic dose of <2 mg/kg; however, when levels are >7 mg/kg, many of the adverse effects it exhibits will occur.[2] Serotonin syndrome has been found to occur when combining serotonergic agents with methylene blue at a dose of 5 mg/kg.[19] Methylene blue use also requires caution in patients with renal failure due to its ability to reduce renal blood flow.[2] Also, as noted in adverse effects, patients taking any drug with serotonergic activity such as SSRIs should avoid the administration of methylene blue due to the risk of serotonin syndrome.
Go to:

Toxicity​

The research concludes that there has been no antidote for treating methylene blue toxicity to be found to exist. If anaphylaxis does occur, the administration of methylene blue should stop immediately and promptly follow by supportive care, although severe anaphylactic shock with methylene blue is quite rare. Methylene blue may become potentially fatal when used in combination with medications that include or increase serotonin; this is because of its monoamine oxidase inhibiting properties. It may precipitate serotonin toxicity at doses of >5 mg/kg."
-end paste-

Please note that the bisphosphonate drug (alendronic acid) your mother-in-law is taking can also stress the kidneys. Poor Kidney function can cause dementia symptoms.

Ugh, great I don't think she'll be willing to take it straight. The cappuccino we make her every day has been a great way to smuggle in some collagen, bone broth powder, vitamin E and C as the coffee really masks the taste and the milk foam hides anything that might be floating around lol I was so hoping we could add the B1 somehow but I guess not

She has agreed btw to stop taking the alendronic acid, she believes us that somehow when she takes it things go a bit crazy so she's going to now stop and may even have my husband come with her to her next appointment to advocate for her because she wouldn't be able to communicate the things that may have to be insisted on. Will see how it develops, but for now it's a great relief that she's going to stop taking it.
I'm don't think the MB dose is an issue as it's very low (I think it's around 20 drops right now), just within the realm of what has been tried and found to work well in Alzheimer's patients.

We might also give Passiflora a go at night to help her sleep (heck if I was sleeping as poorly as she does I'd be seeing ***t and talking to myself) she just doesn't get enough deep sleep at night.

 

[mostlylurking]

Ugh, great I don't think she'll be willing to take it straight. The cappuccino we make her every day has been a great way to smuggle in some collagen, bone broth powder, vitamin E and C as the coffee really masks the taste and the milk foam hides anything that might be floating around lol I was so hoping we could add the B1 somehow but I guess not

She has agreed btw to stop taking the alendronic acid, she believes us that somehow when she takes it things go a bit crazy so she's going to now stop and may even have my husband come with her to her next appointment to advocate for her because she wouldn't be able to communicate the things that may have to be insisted on. Will see how it develops, but for now it's a great relief that she's going to stop taking it.
I'm don't think the MB dose is an issue as it's very low (I think it's around 20 drops right now), just within the realm of what has been tried and found to work well in Alzheimer's patients.

We might also give Passiflora a go at night to help her sleep (heck if I was sleeping as poorly as she does I'd be seeing ***t and talking to myself) she just doesn't get enough deep sleep at night.

So glad to learn that her son will go with her to the doctor! Writing down little things (that are concerning) and taking the list along may bolster his courage to speak up.

Your mother-in-law would very likely sleep better if she was taking a thyroid medication that included T3. Females simply cannot convert T4 into T3 because the liver needs to be working well in order to do that task and estrogen lugs the liver down so it is unable to do the conversion.

Thyroid: Therapies, Confusion, and Fraud

Ray Peat

raypeat.com

Thyroid, insomnia, and the insanities: Commonalities in disease

Ray Peat

raypeat.com

The book by Daphne Barnes would be a good way to introduce the idea of taking some thiamine to your mother-in-law. There are many personal recovery stories in the book, told by the patients themselves, complete with which of their symptoms went away. Although specific instructions for how to take the sublingual thiamine need to be followed in order for it to be effective, if the person understands the potential improvement then there is incentive to make the effort. This is an inexpensive supplement; about $7.00 buys a 100 days supply.

 

[messylttlfoodie]

Update: It's now been 3 days since her last dose of alendronic acid and she's still hallucinating and acting strange day and night. Normally by now she'd be back to her 95% normal state, but it's been almost non-stop weird behaviour / hallucinations now since Tuesday. She's lovely and all, no aggression or mean behaviour, she's doing regular day time activities like doing laundry etc but will say odd things like "there's a fly walking in the kitchen!" or talking to a doll, and then at night she'll randomly get up to start packing her clothes because she thinks "we're on holiday and we gotta leave in the morning" and no amount of talking helps really bring her out of it, she first agrees "oh ok" that we're at home but then asks a few seconds later "so what time do we have to leave?" or "do we have breakfast included?". This is different. This now feels like full on dementia (from my research, this seems to fit most with advanced stage Lewy Body Dementia) and my husband can't snap her out of it at night anymore.

Does anyone here have any experience with this type of dementia? Any people in the UK have any advice, from getting the diagnosis if patient is resisting to get tested for it to paying for care or providing care yourself other than whats already been mentioned? I'm totally overwhelmed by what's happening right now...

 

[HeyThere]

Update: It's now been 3 days since her last dose of alendronic acid and she's still hallucinating and acting strange day and night. Normally by now she'd be back to her 95% normal state, but it's been almost non-stop weird behaviour / hallucinations now since Tuesday. She's lovely and all, no aggression or mean behaviour, she's doing regular day time activities like doing laundry etc but will say odd things like "there's a fly walking in the kitchen!" or talking to a doll, and then at night she'll randomly get up to start packing her clothes because she thinks "we're on holiday and we gotta leave in the morning" and no amount of talking helps really bring her out of it, she first agrees "oh ok" that we're at home but then asks a few seconds later "so what time do we have to leave?" or "do we have breakfast included?". This is different. This now feels like full on dementia (from my research, this seems to fit most with advanced stage Lewy Body Dementia) and my husband can't snap her out of it at night anymore.

Does anyone here have any experience with this type of dementia? Any people in the UK have any advice, from getting the diagnosis if patient is resisting to get tested for it to paying for care or providing care yourself other than whats already been mentioned? I'm totally overwhelmed by what's happening right now...

It seems pretty sudden to be in that state of dementia so quickly, no? "Normally by now she'd be back to her 95% normal state", "[..] now Non-stop since Tuesday". Maybe taking the med away triggered something. I don't believe in coincidences right away and need to be proven that it really is one. Action (taking a med away) /reaction (sudden non-stop dementia symptoms) needs to be looked into IMO. As harsh as my other post came off with my frustration, you have absolutely no idea how my heart breaks for you dealing with this.

 

[Bluebell]

Methylene blue Side Effects: Common, Severe, Long Term

Learn about the side effects of methylene blue, from common to rare, for consumers and healthcare professionals.

www.drugs.com

 

[mostlylurking]

Does anyone here have any experience with this type of dementia? Any people in the UK have any advice, from getting the diagnosis if patient is resisting to get tested for it to paying for care or providing care yourself other than whats already been mentioned? I'm totally overwhelmed by what's happening right now...

If the dementia is the result (or partly the result) of a thiamine deficiency or functional blockage, an IV of thiamine would be of great benefit and the recovery time could be very fast. If the physician is not in agreement, then simply taking some thiamine and watching for improvement would be illuminating, so long as you do not take it with anything sweet and space the dose at least 30 minutes from eating anything.

When I was suffering from thiamine deficiency and experiencing major symptoms (at least to me), I tried simply taking around 300-350 mg of thiamine hcl with water. Within 45 minutes, my temperature increased a full degree (to normal), my severe pain disappeared, my energy level normalized, and my head cleared of the feeling of thick cotton padding inside that had been there for weeks. This confirmed to me that my problem was with thiamine, deficiency/functional blockage.

Two videos, a before and after of a patient of Dr. Costantini:

View: https://www.youtube.com/watch?v=dSZPQ8eLvag


(activate the Closed Caption (CC) to understand what this man has to say about his recovery)

View: https://www.youtube.com/watch?v=-kfVr0wtdso

 

[mostlylurking]

She's 74 y/o and takes the following medications :

- Levothyroxine 150mg per day, (increased from I think 125mg per day about 2 months ago which is when we started noticing the cognitive issues and fatigue)
- Alendronic Acid 70mg once a week
- Amlopidine (idk the dose)

Amlodipine is used alone or in combination with other medications to treat high blood pressure in adults and children 6 years and older. It is also used to treat certain types of angina (chest pain) and coronary artery disease (narrowing of the blood vessels that supply blood to the heart). Amlodipine is in a class of medications called calcium channel blockers. It lowers blood pressure by relaxing the blood vessels so the heart does not have to pump as hard. It controls chest pain by increasing the supply of blood to the heart. If taken regularly, amlodipine controls chest pain, but it does not stop chest pain once it starts. Your doctor may prescribe a different medication to take when you have chest pain.
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A question: Have you taken her blood pressure? Do you know if she is maybe taking too much of this stuff and she maybe has low blood pressure?

 

[messylttlfoodie]

Amlodipine is used alone or in combination with other medications to treat high blood pressure in adults and children 6 years and older. It is also used to treat certain types of angina (chest pain) and coronary artery disease (narrowing of the blood vessels that supply blood to the heart). Amlodipine is in a class of medications called calcium channel blockers. It lowers blood pressure by relaxing the blood vessels so the heart does not have to pump as hard. It controls chest pain by increasing the supply of blood to the heart. If taken regularly, amlodipine controls chest pain, but it does not stop chest pain once it starts. Your doctor may prescribe a different medication to take when you have chest pain.
-end paste-

A question: Have you taken her blood pressure? Do you know if she is maybe taking too much of this stuff and she maybe has low blood pressure?

We don't have a blood pressure reader so no, we haven't done that. Did take her temp today to rule out delirium from fever due to infection, her temp was 97.4°F, as expected with her hypothyroidism. I didn't manage to get her heart rate.

She's still hallucinating but today she actually said herself that for the past three days she'd been seeing stuff ie admitting that she's hallucinating. People with dementia don't realise they're hallucinating and how many days it's been.
I mean... This gives me hope! I have a hope that the alendronic acid is slowly wearing off as she was on a once a week dose, I would suspect that it takes a few days to clear out and then some (alendronic acid has a half life of several years apparently, cry)

We temporarily stopped the MB in case there's something going on with her serotonin levels, in fact we didn't give her anything today just to step back and observe, but I also just came across some interesting stuff regarding the alendronic acid potentially causing chronic hypocalcaemia, which in turn can cause confusion, delusions, and hallucinations.

https://databankws.lareb.nl/Downloads/kwb_2010_4_bisfo.pdf

Hypocalcemia-Induced Reversible Psychosis

Hypocalcemia can manifest as a variety of presentations, ranging from neuromuscular irritability to seizures, and psychiatric manifestations such as emotional instability, anxiety, and depression. Here, we present a unique case of hypocalcemia-induced ...

www.ncbi.nlm.nih.gov

 

[webbt]

Niacin deficiency causes dementia.
Niacinamide doesn't cause the skin flushing.
NADH is another option. (get PANMOL trademarked product). This in theory is the best option.

Very high doses can be used.
[if you are interested in research of niacin and schizophrenia, check out pdf of "Niacin the Real Story"]


There is something called wheat madness or grain madness or bread madness. I forget. It is an observed phenomenon. Maybe try gluten free.


vitamin a deficiency causes night blindness. non-defatted mild tasting liver powder and plain vitamin a supplement are options.

Methylene blue, according to Chris Masterjohn PhD, has been shown to increase rate of falling in the elderly when taken long-term. Theory is it is a toxin to part of the mitochondrial respiratory chain or something like that. It induces a shortcut in energy production that is only useful when a problem actually exists.

Get an air filter

Check indoor CO2 level. Is she sleeping with door closed?
Also can improve sleep by having a bed of her own rather than next to another person. (For temperature reasons and co2).


Vitamin infusion would be a quick fix to try out.



Smoothies or yogurt are good for hiding things.


How much protein is she getting? The elderly need a lot and this tends to be neglected.


My personal hunch is that pantethine (fat-soluble b5) would be useful. May irritate GI after a while, though.


It is not normal to have dementia at any age. Do not accept it as fate. Good luck.

 

[HeyThere]

Ok, I'm back to being pissed off at the laziness to do the SIMPLEST Googling!!!!!!!

"Alendronic acid and Hallucinations - a phase IV clinical study of FDA data

Summary:​

Hallucinations is found among people who take Alendronic acid, especially for people who are female, 60+ old, have been taking the drug for 1 - 6 months."

Will you have Hallucinations if you take Alendronic acid? | eHealthMe

There are 16,291 people reported to have side effects when taking Alendronic acid. Among them, 113 (0.69%) have hallucinations. These people tend to be female, 60+ old, have been taking the drug for 1 - 6 months, also take medication Paracetamol, and have Depression

www.ehealthme.com

 

[HeyThere]

If you did the simplest 10 second google search, you'd see ALL THREE MEDICATIONS SHE TAKES can cause hallucinations. What more do you need to hear??????

Will you have Hallucinations if you take Alendronic acid? | eHealthMe

There are 16,291 people reported to have side effects when taking Alendronic acid. Among them, 113 (0.69%) have hallucinations. These people tend to be female, 60+ old, have been taking the drug for 1 - 6 months, also take medication Paracetamol, and have Depression

www.ehealthme.com

Amlodipine and Hallucinations - a phase IV clinical study of FDA data​

Summary:​

Hallucinations is found among people who take Amlodipine, especially for people who are male, 60+ old, have been taking the drug for < 1 month.
The phase IV clinical study analyzes which people take Amlodipine and have Hallucinations. It is created by eHealthMe based on reports of 285,218 people who have side effects when taking Amlodipine from the FDA, and is updated regularly. You can use the study as a second opinion to make health care decisions.
Phase IV trials are used to detect adverse drug outcomes and monitor drug effectiveness in the real world. With medical big data and AI algorithms, eHealthMe is running millions of phase IV trials and makes the results available to the public. Our original studies have been referenced on 600+ medical publications including The Lancet, Mayo Clinic Proceedings, and Nature.

 

[webbt]

You can often mitigate toxic drug effects with nutraceutics. Thiamine, niacin/NAD, beef liver, vegetables.

 

[mostlylurking]

We don't have a blood pressure reader so no, we haven't done that. Did take her temp today to rule out delirium from fever due to infection, her temp was 97.4°F, as expected with her hypothyroidism. I didn't manage to get her heart rate.

It would be a good idea to get one. If she has low blood pressure it could lower the amount of oxygen getting to her brain.

Low body temp can also be caused by thiamine deficiency, although I don't doubt that she has hypothyroid symptoms because she isn't getting any T3.

Getting a pulse monitor would be a good idea. Hypothyroidism causes slow pulse; thiamine deficiency can cause erratic pulse.

We temporarily stopped the MB in case there's something going on with her serotonin levels, in fact we didn't give her anything today just to step back and observe, but I also just came across some interesting stuff regarding the alendronic acid potentially causing chronic hypocalcaemia, which in turn can cause confusion, delusions, and hallucinations.

If you are going to try to work with her physician it would be a good idea not to do things to her that you don't want to share with him. Asking the physician to change her thyroid medication to one that includes T3 is a reasonable request. Documentation from PubMed might be helpful to bring along.

Thyroid function in the elderly - PubMed

Many differences in thyroid function exist between elderly and younger populations. Although serum T4 levels probably do not change with age, serum T3 levels appear to decline. Hyperthyroidism in the geriatric population may be atypical and is characterized by anorexia and constipation. The...

pubmed.ncbi.nlm.nih.gov

Treatment of hypothyroidism - PubMed

Thyroid disease affects up to 0.5 percent of the population of the United States. Its prevalence is higher in women and the elderly. The management of hypothyroidism focuses on ensuring that patients receive appropriate thyroid hormone replacement therapy and monitoring their response. Hormone...

pubmed.ncbi.nlm.nih.gov

"Thyroid disease affects up to 0.5 percent of the population of the United States. Its prevalence is higher in women and the elderly. The management of hypothyroidism focuses on ensuring that patients receive appropriate thyroid hormone replacement therapy and monitoring their response. Hormone replacement should be initiated in a low dosage, especially in the elderly and in patients prone to cardiac problems. The dosage should be increased gradually, and laboratory values should be monitored six to eight weeks after any dosage change. Once a stable dosage is achieved, annual monitoring of the thyroid-stimulating hormone (TSH) level is probably unnecessary, except in older patients. After full replacement of thyroxine (T4) using levothyroxine, the addition of triiodothyronine (T3) in a low dosage may be beneficial in some patients who continue to have mood or memory problems. The management of patients with subclinical hypothyroidism (a high TSH in the presence of normal free T4 and T3 levels) remains controversial. In these patients, physicians should weigh the benefits of replacement (e.g., improved cardiac function) against problems that can accompany the excessive use of levothyroxine (e.g., osteoporosis)."
-end paste-
In other words, excessive use of levothyroxine causes osteoporosis which would be an excellent reason to switch her to a natural desiccated thyroid product such as NP Thyroid by Acella. Because T3 facilitates the conversion of T4 into T3 by the liver, the desiccated thyroid product is safer and works better than just synthetic T4.

 

[messylttlfoodie]

Ok, I'm back to being pissed off at the laziness to do the SIMPLEST Googling!!!!!!!

"Alendronic acid and Hallucinations - a phase IV clinical study of FDA data

Summary:​

Hallucinations is found among people who take Alendronic acid, especially for people who are female, 60+ old, have been taking the drug for 1 - 6 months."

Will you have Hallucinations if you take Alendronic acid? | eHealthMe

There are 16,291 people reported to have side effects when taking Alendronic acid. Among them, 113 (0.69%) have hallucinations. These people tend to be female, 60+ old, have been taking the drug for 1 - 6 months, also take medication Paracetamol, and have Depression

www.ehealthme.com

I already know about this. I shared this in my own posts in this thread. Please stop posting angry replies in here. I'm trying to figure out what to DO about this. Do you actually think I don't spend time googling the ***t out of this situation? But just knowing that yes, google says it can happen, doesn't help me much. I then still need go figure out what to do about it, in lieu of the person themselves being willing to try different things, or going to get a simple blood test done. Again, please stop. You're not helping, you're just venting. Please go vent somewhere else, not in response to me. I've had another sleepless night and now she's stood in the kitchen looking like a zombie thinking our nieces are here. I just can't.

 

[Lilac]

OP, I have been down this road. If you can search my posting history with "hallucinations," you will be able to read about what my mother went through. Ray's email thoughts should be there. The more acute phase was from about age 86 to her recent death at 93. I would not call what she had dementia. It was brain failure of some kind--a degenerative disease, or energy failure, as I would think of it in Peat terms. But her long-term and short-term memory were good, as were her reasoning and functioning, apart from the hallucinations (which ranged from mild to extreme) and the emotions (fear, anger) that sometimes accompanied the hallucinations.

Neurologists and one loathsome neurologist/psychiatrist provided zero relief and zero answers. One relatively nice neurologist said he was amazed by my mother's symptoms and had never heard anything like her case. This was a late middle-age man! Years later, I was once again researching online and found a label for what my mother had (which I can't think of right now, but it was a French-sounding name, somewhat like Guillane Barre syndrome). Not that having a label helped, as there was no defined treatment.

In my mother's last weeks, her history with these problems came into focus. I then understood that symptoms went back more than 20 years, when her personality changed and she exhibited anger at times. That went on for years. Interestingly, her mood markedly improved while she was on the Wheat Belly diet. So I would say eliminating wheat was very helpful. I would also say this syndrome is gut-related. No surprise, as so many diseases are. Her first two acute bouts of hallucinations set in fall to winter. She was relatively fine by spring. So light-related, too.

Good luck!

Edited to add: Charles Bonnet syndrome is what I was trying to remember.

 

[HeyThere]

I already know about this. I shared this in my own posts in this thread. Please stop posting angry replies in here. I'm trying to figure out what to DO about this. Do you actually think I don't spend time googling the ***t out of this situation? But just knowing that yes, google says it can happen, doesn't help me much. I then still need go figure out what to do about it, in lieu of the person themselves being willing to try different things, or going to get a simple blood test done. Again, please stop. You're not helping, you're just venting. Please go vent somewhere else, not in response to me. I've had another sleepless night and now she's stood in the kitchen looking like a zombie thinking our nieces are here. I just can't.

I understand more than you know.

But you are in a forum that loves to go down rare paths like "Try 15 grams of goat manure with 3 grams of ink from your printer and then shake your right foot,, oh and have you tried taking the water out of your toilets at night??" meanwhile, all 3 of the meds she is on have documented possible side effects of hallucinations.

Maybe make it clear that you do not believe these are possible reasons she is hallucinating, then i can disagree and move on, or agree it is probably the meds, and then ask what do we think can help her then.

 

[mostlylurking]

But you are in a forum that loves to go down rare paths like "Try 15 grams of goat manure with 3 grams of ink from your printer and then shake your right foot,, oh and have you tried taking the water out of your toilets at night??"

THEN WHY ARE YOU HERE???? Apparently, you enjoy disrupting for disruption's sake. @charlie is there anything you can do about this?

A suggestion to anyone who wishes this imbecile would just go away, there's a handy little tool you can get to by hovering over @HeyThere which gives you the option to IGNORE him so you do not have to look at his posts.

 

[HeyThere]

THEN WHY ARE YOU HERE???? Apparently, you enjoy disrupting for disruption's sake. @charlie is there anything you can do about this?

A suggestion to anyone who wishes this imbecile would just go away, there's a handy little tool you can get to by hovering over @HeyThere which gives you the option to IGNORE him so you do not have to look at his posts.

Take care. good luck.