Having hallucinations

Janutt

Hello,

I was wondering if anyone is or has hallucinations? I have been getting them more and more lately. They feel so real and it takes me a bit to realize that they are not real. I’m not sure what to do. I don’t want to hurt myself nor do these hallucinations suggest anything like that. I’m on aricept 10mg. Is this a side effect?

Iris L.

Vivid hallucinations are seen in Lewy Body Dementia. You might want to discuss with your neurologist.

Iris

Janutt

All I know is that when they did the pet scan and csf it showed positive for Alzheimer’s disease. I am not sure what they do to look for Lewy body dementia. I am wondering if it’s caused by something I heard about an incident across the street from our house and it caused me to have hallucinations. I don’t know. I have been feeling better now. Just scary sometimes

Iris L.

Janutt, if you are having hallucinations, then you must be sure of the safety of your surroundings. You must demrntia-proof your home.

There are medications against hallucinations that can be prescribed by a dementia specialist if the hallucinations are very disturbing. A dementia specialist would be a geriatric psychiatrist or a geriatrician, for these very specific drugs.

If you can figure out triggers to hallucinations, then you can try to reduce them. But they may still appear. Be aware that hallucinations are due to brain pathology.

Iris

Janutt

Hi iris,

thank you for your reply

what is dementia prooofing mean? I’m still trying to figure this out. But the ones I recently had were about a terrible death across the street a neighbor of ours. So I think this had to be the trigger. I saw things that were related to it if this makes sense. I thought I was “seeing” someone staring at us but I was a branch growing up out through our front bushes. Another was a large blue figure with no head and walking around. We called the doctor and he said that he may decrease the donepezil from 10mg to 5 mg I have had them in the past but I have been afraid to mention them because of my recent experience with them and I then had a couple of strokes. I have been checked out for strokes again and it was negative it does take me awhile to recover from them.

DrMichaelSG

Hi Janutt,

I'm new here, but thought I should note that on rare occasions, donepezil (Aricept) can cause hallucinations. I was prescribed donepezil in 2019 for what they thought at the time was frontotemporal dementia, or FTD (I also have a more slowly progressive variant of ALS -- Lou Gehrig's disease -- and FTD is frequently comorbid with ALS). When I was prescribed donepezil, I almost immediately began to have vivid hallucinations). The studies on his issue are limited, and the hallucinatory effects of donepezil are not widely known (I am well aware of them, having had hypersensitivity to many drugs (tizanidine, gabapentin, lyrica, compazine, and donepezil -- among others! -- caused me severe hallucinations; even morphine ER sent me into a delirium state that I've never recovered from). Here is the most recent one that I'm aware of: https://karger.com/crn/article/14/3/359/822686/Donepezil-Induced-Complex-Multimodal

This is clearly an individual matter; everyone is different. But see your doctor!

Michael

DrMichaelSG

Hello Iris,

Will you kindly elaborate as to what is needed when "dementia-proofing" one's home? I ask because I have had extremely vivid complex hallucinations, one was a spinning bronze ball, another was a tall painter standing in the hallway (he was tall, but disappeared before I had the chance to pay him. ;) ....) and two others were my granddaughters. One of the hallucinations re. my granddaughters occurred when my wife was present; of course, she saw nothing -- both appeared and disappeared quickly, and neither spoke a word (strangely, they were either younger or older than their present age -- that was the most unsettling part of both experiences). But I see pastel patterns all of the time -- some of these patterns, like the spinning bronze ball, being far more beautiful than the colors I've experienced in the "real world" (whatever THAT is). :)

Sorry for the digression (my tendency is to opine these days). But will learn brevity....(cannot promise, but promise to try :)

Michael

P.S. I'm not yet diagnosed, but know evidence-based medicine well, as I've worked in the healthcare field for 40+ years, i.e., direct HC (ER, Critical Care, Psych, and other), government and private sector HC administration, and taught HC at the graduate level. My PCP concurs with my self-diagnosis of LBD (neuros and TBI docs agree with dementia). I'm in-process of neuropsychological testing (had negative -- and likely classic -- experience already: "You don't PRESENT like somebody who has dementia!" -- would have left room had I not already waited 2 and 1/2 months for appointment). Currently, I have severe short-term memory loss, periods of gross confusion, balance problems (I walk into doorways and walls often, but I also have ALS), hallucinations (not as often recently), frontal headaches, insomnia (I'm wide wake now!), weird dream states (and I hadn't dreamed in years!), sometimes overly drowsy, lability (lots of that), hyperfocus, rumination, don't want to leave home (because of confusion, paranoia), and other. Unlike the past, I now live mostly in the moment -- and this is, I think, a blessing from God, as my tendency to this new state of "presentness" (I call it that) more or less anesthetizes my awareness as to what is actually happening (I DO acknowledge how awful this is for my wife -- and THAT is truly the most horrible consequence/ biggest anxiety/ worry for me).

P.P.S...I already violated my commitment to brevity.

Iris L.

Welcome to our online support group, Michael. We are a small group but we support each other, along with the other members. I was a pediatrician in my career. I was very disappointed that my medical colleagues didn't take me seriously, instead, some implied that I was malingering. I had severe memory loss and auditory hallucinations. For a long time my diagnosis was atypical depression until I was diagnosed as having systemic lupus. Then in 2008 I was diagnosed as cognitive impairment not otherwise specified. This dx has been eliminated in the DSM5. My neurologist offered me a trial of Exelon patch and I noticed improvement in speech and memory within a few days. So I continue with Exelon patch, and also memantine extended release. I have basically the same with these meds and with Best Practices.

I have several medical contributors to my memory problems. My blood pressure was elevated 160/100, now controlled with antihypertensive medications. I also have antiphospholipid syndrome, and I was hypothyroid. Sleep apnea is also a diagnosis. I had an amviid PET scan which showed that I do not have excess amyloid in my brain, so my neurologist says I do not have Alzheimer's Disease.

The other symptoms that you mention, I think I have had them, too. I aim to live in the moment--I call this living in a bubble--not being bothered too much by the outside world.

If I were you, I would hold off on self-disgnosis. Are you a medical doctor? The diagnosis is best made after all medical dementia mimics have been ruled out. Also, it will be interesting to see your neurocognitive testing results. Is this your first evaluation? You will need to see a decline over time.

Were you recently diagnosed with ALS? You are still walking. Good for you! I just finished reading a memoir called "It's Not Yet Dark" by Simon Fitzmaurice, about his journey with ALS in Ireland. He is fascinating! He is a noted filmmaker and fathered twins after being ventilated.

Dementia-proofing the home basically refers to making the home safe for a PWD (person with dementia). The majority of PWDs have anosognosia, s characteristithat t keeps them from bring aware of having dementia. They become unaware of dangers in their environment and eventually lose the ability to respond to dangers. The usual danger areas involve the stove and cooking, cleaning and other chemicals, guns, knives, power tools, and the like. There are other measures to take. The alz.org site has more information.

If you have instances of leaving the home unaware, you need to have adequate locks and alarms placed on the doors so you won't be able to leave unnoticed. There is medication that can help with hallucinations if they are very disturbing to you. They are usually prescribed by a geriatric psychiatrist.

A huge concern is driving ability. If there is any loss in driving ability, driving needs to stop.

Considering the seriousness of these neurological conditions, there are steps that can be taken to ease the journey for us patients and for the family members. This is what we discuss on the boards. This is all for now. Write back when you can. Your wife is welcome to join the spouses on their board. Members can post on any board.

Iris

DrMichaelSG

Hello Iris and all,

Thank you for your response - it is very much appreciated. I assumed the above is what you meant, but there are nuances that come with every disease, and so I wasn't sure. Medicine is extremely complicated stuff! :)

While I have a more lucid moment, I thought I should respond:

To begin, I am aware that I have lost my ST memory. I remember little of what I did only a few minutes ago -- sometimes, for example, I take medication but forget which pills I just took -- now have a pill container, such that we are sure that I haven't doubled up on any of my meds (BTW, that's an excellent example of the prevention concerns I asked you about - and that you have mentioned above). But that something is very clearly wrong has been crystal clear to me (my memory has not been). LT memory is still intact.

I also have hypertension - which I've had for many years (I'm the only one of 5 siblings that have high BP). Related, I've had an extensive history of orthostatic issues, in which I had periods of rapidly shifting hyper- and hypo-tensive episodes, as well as episodes of SVT (I'm on metoprolol, have an implanted loop recorder -- which is no longer operative - the beta blocker controls my HR sufficiently). And so I'm also on amlodipine and irbesartan. My BP has thus been challenging to manage. My SVT, BP, and orthostatic episodes have been challenging - diagnostically and treatment-wise (CTs, MRIs, tilt-table, labs, etc.) -- I've stood up and fallen many times due to orthostatic BP (once fell through a plate glass door window; that incident happened at11 am....at that time of the day, I had not been imbibing). :)

I do have "moderately severe" sleep apnea (O2 down to 79% on occasion), and have been ordered a CPAP machine (I had one years ago, and quit using it -- not a wise decision!). I have frequent episodes of Restless Legs Syndrome -- (RLS occurs in both arms -- that is a challenge, I can assure you) in addition to Upper Motor Neuron Dominant ALS, and so yes, I am blessed to still be walking (I used to run extensively -- marathons -- and I lifted weights, healthy eating, etc., so the ALS dx. was a surprise - I was diagnosed at Cleveland Clinic in 2012 or so). My BMI is 25. Cannot have an MRI, as I have a SCS (placed in 2016, and I refuse to have the leads removed from my spinal column -- too risky as I see it). :)

I have a Ph.D., and am published in the MH field mostly, but also in the business field - my doctorate is in Business Administration. I've worked in disease management and health and wellness programs for many years. Medicine sure has changed.

As to neuropsych testing, this is my initial exam. I have taken "informal" cognitive tests - and have not done very well. However, I sense that I had taken most tests during periods of confusion -- and I tend to cycle in and out of confused states throughout the day (and night). The degree of confusion varies considerably, but suffice it to say that my head is always foggy -- that feeling has never gone away since the July 2023 debacle mentioned above. I do understand the need to wait and persist (thank you for your confidence and advisement). This is difficult to do, however, when one encounters a neuropsychologist who questions my "presentation"...as if ALL who have a form of dementia cannot possibly tell you where they are and also drool on themselves (I posted about this elsewhere, I believe -- don't remember -- but the comment was maddening).

By the way, there is an excellent video that demonstrates what it feels like to have dementia. Its essence is spot on. I hesitate to share it -- watching it can be painful for caregivers, I know -- but I imagine that most have seen this video before. I must say that I was pleased to see it, as it somewhat validated this newfound -- and extremely strange/ foreign -- experience: https://www.google.com/search?q=what+does+dementia+feel+like+video&oq=dementia+video+youtube+&aqs=chrome.5.69i57j0i22i30l2j0i390i650l3.14055j0j7&sourceid=chrome&ie=UTF-8#fpstate=ive&vld=cid:1b05ac7a,vid:Erjzl1WL8yQ

Thank you all! I have a long way to go. I am trying not to focus on this (hard to do, as it tends to cause self-care of ALS to be even more difficult than it already is -- the two together - along with everything else - are complex...also had a lumbar fusion L3 to S1 over ten years ago - all of this is complicated by lumbar issues as well as neck and now thoracic concerns). As a Type A person, I still have a (strong) tendency to overdo everything - and then I get into trouble (spasms, cramps, muscle injuries, broken bones from falls, etc.). The cognitive decline has caused me to let me guard down far more than I should. As a consequence, I move too fast, and then get hurt (walk into a wall, spill liquids). My wife has addressed some of these things (plastic glasses and cups).

Too much info, likely (my tendency)...and so l'll stop there - except to say that hallucinations were unsettling at first, but they really don't bother me. They have also become less frequent -- although I did have auditory halluc. last night - heard my English bulldog crying -- yet, she was sleeping beside me.

Thanks again!

Mike

LuciaMedekRN

Hi! I don't think anybody ever answered the question regarding dementia proofing a home. It's important to think in advance about things that maybe dangerous in a moment when the mind is, what's the right word here, forgetful, or 'tricking' you. There are ways to make the envoroment you live in safer, and to make sure there are important 'reminders' that are easily accessible. Things like emergency numbers, an extra set of keys (or other often used objects that are easily misplaced), appliances that have automatic shut offs, setting water temps in the home to safe maximums, easily read clocks, calendars, possibly even a note to yourself or other reorienting comforts that help if there are specific triggers, delusions or hallucinations. One suggestion I liked is to make sure rooms are well lit as shadows can trigger hallucinations. Here are a few links. The first two are my favorites.

https://www.thecareside.com.au/post/how-to-dementia-proof-your-home/

Or

https://stowellassociates.com/dementia-proof-your-home/

Or

https://www.alz.org/help-support/caregiving/safety/home-safety#:~:text=Remove%20locks%20on%20interior%20doors,of%20light%20can%20be%20disorienting

Or

This one is ok, but I dunno, it just doesn't sound as 'friendly.'

https://www.nia.nih.gov/health/home-safety-checklist-alzheimers-disease

DrMichaelSG

Iris, apologies for not addressing your question concerning driving. I turned in my driver's license voluntarily two years ago, as I have bilateral dropfoot. Also, I do recognize that sleep apnea, RLS, and near-chronic insomnia are symptomatic of LBD. As is the orthostasis (POTS) that I've had for several years. This was likely brewing for several years (?). A cardinal difference, it seems, between LBD and AD is one of confusion that fluctuates throughout the day ("show time"). I have that, and believe it to be a key differentiator (i.e., why I believe that I have LBD, and not AD).

I pray that I'm not presenting here as a "know-it-all"....as nothing could be further from the truth. If so, I apologize. My experience in HC causes me to expound on most everything, so I realize I may come across that way. It's a problem, too, because I know HC (enough to be dangerous), and I have research interests -- clinical and statistical. Taken together, ALS and LBD--are such strange diseases....both cross over so much that even the neuros I've seen have written in notes that my situation is immensely complex. And it is. It's also REALLY, REALLY weird. :) And I hadn't yet mentioned that I have had partial focal seizures, complicating the cause of the past year's decline in cognition (recent EEGs, incl. 3-day IP video-EEG) were all WNL, as they usually are. Wow!

Iris L.

Welcome, Lucia. It's very nice of you to help your friend in her caregiving. Caregivers need a LOT of help and the outside world and professional are often clueless, I am sorry to say. Thanks for posting some links for Mike. I used to have a lot of links but now I don't. I post often about anosognosia because most new members complain that their LOs are in denial, which is not the case.

Also, sometimes new members inquire about psychotherapy for newly diagnosed patients. We have to tell the new members that their PWD (person with dementia) would be unlikely to benefit from psychotherapy because they will not develop insight into anything. What are your thoughts on this? Perhaps you can visit the Spouse/Partner board and give your input on this topic.

Since you have some background, I hope you will continue to visit and give and receive support from our members. We have a few medical and nurse members in supportive, not professional roles.

Iris

Iris L.

Mike, feel free to post as much as you want. There are few areas for people like us to express ourselves. I have a lot to respond to you, but I may have to binhalation.

Regarding losing your short term memory: I had, and sometimes still have, the same problem with remembering taking my medications. What saves me is being diligent about using my pill minder. I can't just take a pill from the bottle, because 60 seconds later I don't recall if I have taken it or not. I have to see the empty pill container for that day to be sure. For my inhalers, I chart when I use them, so I don't duplicate inhalations.

What has helped me immensely with my short term memory is using Exelon patch 9.5 mg. It is not only for Alzheimer's Disease. I also use memantine 28 mg extended release capsules for memory and speech. Before, I could not complete my sentences because, in just a few seconds, I would forget what I was talking about. I could not read a book or magazine because I could not remember from the beginning to the end of a sentence. I was that compromised! I see that you already had a bad response to Aricept. It is known to make patients with FTD worse.

My long term memory is fading. Not to a great degree, but I notice more gaps in my memory, even from a few years ago. Fortunately I have been taking a lot of notes to remind myself. But then I ask myself, why do I have all of these notes?

Two years ago I had a bad dizzy spell with tachycardia. I thought I had POTS. But I did not have POTS. Instead, I was evaluated for ATTR, a terminal cardiac condition. But I didn't have ATTR either. In retrospect, I believe my dizzy spell was from not eating, because I had been on a vegan OMAD diet and I had list a lot of weight. The dizzy spells have stopped. But I regained the weight. My BP was low then, but it is normal now.

Regarding your falls, are you wearing a helmet and padding? Do you wear braces for foot drop? Is your SCS for ALS?

I was using CPAP for sleep apnea, but I stopped when I lost a huge amount of weight. But since I regained the weight, I suppose I need the CPAP again.

Regarding my admonition against self-diagnosis: I had my doctor hat on in which we are supposed to warn against self diagnosis. But I have to admit, I have self-disgnosed. I read that patients with RLS are iron-deficient. I never got a diagnosis of RLS, but my legs bothered me a lot before sleep. So I treated myself with iron supplementation, after checking my TIBC. After several months my legs began to feel better. I supplemented with iron for several years. Having RLS in both arms is terrible! Have you tried iron supplementation? I'm not sure if medicine has changed so much as it has overlooked many demographics of patients. Most clinical studies were done on young to middle-aged Caucasian males. Only relatively recently have significant clinical studies been done on women, older adults, African-Americans and other ethnic groups. Even clinical care has been overlooked or mis-evaluated in other demographics. One psychiatrist told me that my female nature had been suppressed by becoming a doctor, and that is why I had memory loss. At the very beginning, I had had a febrile illness; I don't know how much that had to do with my memory loss. But I do know that my memory loss had NOTHING to do with my female nature being suppressed over becoming a doctor!

You mentioned a debacle in July 2023--was that the hallucination about your granddaughter?

You posted a link--I could not get it to load.

One of our emeritus members was Alan in Colorado. He had FTD and was himself a psychologist. He warned us that stress and anxiety reduce our cognition by HALF! That made me become diligent about removing stress from my life. I don't have the stress-reacting reserve that I used to have. I get overwhelmed too easily. So I deliberately avoid stress!

Well, that's all for now. When will be your testing? It will be good to have something objective to deal with.

Iris

Iris L.

I wrote out the above yesterday but failed to post it! smh!

Iris

DrMichaelSG

Lucia, thank you very much for the links. I wanted to thank you before.........but I forgot! (honestly!)

Iris, thank you as well for the information. It's all extremely helpful. I'll answer your questions first, and then perhaps expound a bit on others and in general, keeping brevity in mind. Sorry for brevity, but need to type shorter comments today (i think faster than I type...[this causes its own challenges!]....going forward, if this happens, you’ll know its because of muscle cramping (no big deal, it happens). Sometimes, it might be related to brain fog. I'm just glad that everyone here understands these things! :)

Let me first say that I am so sorry that YOU are going through this. It's a true blessing that you're here, as your medical knowledge, experience, and expertise can help so many folks. Thank you for your expertise....I've learned so much already. Just need to pace myself. :)

1) Re. taking pills, great suggestion, thanks ! The last I need is to over- (or under-) medicate. I really do get what you've said re. forgetting what was taken after 60 seconds. EXACTLY what happens to me (sometimes, I've been < 20 seconds.... and that's the truth). :)

2) Thank you for the info re. Exelon patch and memantine. I'll definitely discuss with my neuro (they want me to go to a Memory Center). Also, interesting comment on Aricept. I did not know that. I was initially dx. with possible FTD in 2018 (comorbid with ALS), and that is when I was prescribed Aricept. At that time, I was having difficulty coming up with words that began with the letter "F". Couldn't remember the last 3-4 words (out of 12 words needed in total).

3) I'm not wearing protective wear. But I probably should be. Your suggestion is a good one (not happy to think about it, honestly, but I do understand it...and will consider it ...honestly!). :)

4) The hallucinations re. my granddaughters happened after the July "debacle." And the July disaster relates to my being prescribed Morphine Sulfate ER tabs....after taking 5 pills (not at once!!! -- but over 2 and 1/2 days), I was in the throes of a severe delirium state. Never want to go there again (there truly are no words....)

5) Here's the link again: https://www.youtube.com/watch?v=Erjzl1WL8yQ

If it doesn't work, type "Dementia from the inside" into YouTube.

6) neuroysch testing, the second part -- will be in September 2023 (next month).

I'll stop there, and go back later....to be sure i didnt miss anything. Thanks so much! And. Again, so sorry for length.

Mike

Iris L.

Hello Mike, I couldn't watch your video. I am acutely aware of my own experiences. In fact, in responding to you, I have recalled memories about my poor functioning that I was glad to have forgotten.

Also, I am actually glad to be here on these messsge boards! Here is where I have learned so very much about what I need to do for myself! The outside world has very little constructive information or guidance for people like me. I was told there was nothing to be done. Well, there's a lot to be done! And I'm doing those things! I was in a very poor condition before I found this community.

I have met wonderful people, who have been willing to share their challenges and hardships so that I an learn from them. There's no cure, but there is life! I'm going to live my life! I am not going down without a fight!

Iris

DrMichaelSG

Hello Iris, so sorry that you cannot view it. But I also know you understand the sensation/ experience to which I'm referring. I did see another YouTube video in which it was explained that persons with dementia view the world as if they were wearing a pair of swimming goggles. This observation is exactly right....I now see the world with such tunnel vision....but with the added head fog. Peripheral vision exists....it is just that I no longer pay attention to what is peripheral.....I see stuff that's on the periphery, but I'm hyper-focused more so on what is directly in front of me. Here's the other video:

https://www.youtube.com/watch?v=iaUsRa5kNyw

From my perspective (pun intended), this demonstration is brilliant.

Should I be starting new discussions, and not posting to existing ones? Sorry if I've violated norms! Thanks!

Mike

DrMichaelSG

Hi Iris and all,

Here's the other video I referenced above. I now see that there is a way to post full video, not simply the link.

https://youtu.be/Erjzl1WL8yQ?si=UEEV4krsoJPWG_zk

https://youtu.be/Erjzl1WL8yQ?si=UEEV4krsoJPWG_zk

Iris L.

Mike, it will be good for you to start your own threads regarding your topics and questions. Then you will get responses directed towards your concerns. Janutt started this thread on hallucinations, and we've gone off the topic.

You can post links and videos if you like. Personally, I already know what my mind feels like. I think these videos are good for family members and caregivers to view. I attended an Open House at an Adult Day Care Center once. Part of the program included wearing devices to make the participant know what dementia feel like. We wore goggles smeared with Vaseline, ear muffs, and oven mitts to impair our senses and our functioning. It didn’t quite address how I felt, but I believe the caregivers got a lot out of it.

I have learned to become deliberate about my actions. For example, I don't rely on my peripheral vision. I turn my head to look left and right, then proceed when the way is clear. I also have gotten annual ophthalmologist exams, including visual fields testing. Visual changes in older adults can sneak up on one.

Mike, you seem to be accepting already that you have dementia. Yet you have not had a thorough neurocognitive evaluation. If I were you, I would not want to jump the gun on that diagnosis. When I had my diagnosis of cognitive impairment nos, I got a second and a third opinion. I wanted to be absolutely sure that everything else and everything possibly treatable had been ruled out! But that's me!

You have a complex medical history. My suggestion is to gather all your data for your neurologist consultant. Then go from there. IMO, the best approach is to work with a knowledgeable dementia specialist who will personalize your diagnosis and treatment according to your own body. That's what I have done.

Iris

DrMichaelSG

Thanks so much, Iris. I do agree with your comments regarding the need to wait more patiently on a diagnosis. And, of course, I would be elated to learn I don't have dementia. Thank you for all, Iris! They want me to be evaluated by a local university Memory Center. However, my PCP (he's awesome -- one of the BEST doc I've ever known) thinks that'd be of little value now....I tend to agree with him, yet I'll be sure to keep an open mind. I have enough self-awareness left that I understand that I just don't know what I just don't know! And believe me....that's a lot of stuff. :)

Janutt

Hello, Iris and DrMichaelSG,

I am truly sorry about replying. I completely forgot I am on these discussions. Thank you, for all the replies. I plan on reading over all the replies.

Janutt

Hello everyone,

I really appreciate the great links, and suggestions that you all have explained. I do have a medical background but not as extensive has you all have. I had planned on going back to go on as a physician assistant , but then life took over and I became a grandmother and then had a rare heart attack (SCAD), brain aneurysm , AD, 2 strokes, and another splenic aneurysm. Funny, (but not really) that vision becomes an issue as well. I had cataract surgery when I was 52 and then I had istents put in during the surgery because of glaucoma. All, this time I've had vision issues still. So, after reading all this bit of information it explains quite a bit.

Thank you.

Now hallucinations, I have had them before I was on the medicine Aricept. I would see my aunt staring at me and not say anything ( she passed away on my birthday when I was in the hospital for the heart attack), a lady came up to me gave me the biggest hug as I was eating dinner with my DH and son; I said thank you to her and she walked away. My family did not see her. I realized it was the previous owner that had built this house.I have smells, some are pleasant and some not. I have learned that if I wait a bit they will go away, this is when I know they are not real.

I was just in the Hospital for severe chest pains, thank goodness no heart attack. But while I was in the hospital over night I had wandered around the floor, I believe it was because I was not home and this frightened me. I kept asking the nurses they smelled black licorice and smoke. They did not. I have had my medicine switched to the days now and I also have Imdur added which I need to go the cardiologist for this another story. I am taking metoprolol for life and aspirin but, interesting Iris that you have mentioned iron I am a pescatarian and I know my hematocrit levels have been real low and lately my glucose has been high.

Thank for all you help. Sorry I have not been on since I really forgot about this. The ST memory is annoying. :)

Iris L.

Welcome back, Jannutt. I'm so glad you did not have another heart attack!

Are you on any type of cardiac rehabilitation? As you probably already know, cardiovascular disease impacts the physiology of the brain. Whatever you can do to improve cardiovascular health can improve brain health.

I am concerned about your low hematocrit. I think doctors are used to menstruating women being anemic. But menopausal women should not be anemic. If they are, search for the cause, whether from gastrointestinal blood loss or inadequate nutrition.

A few years ago, Alzheimer's Disease was being characterized as "diabetes type 3". I don't know what that means exactly, but anything done to prevent diabetes is a good healthful step.

All of these items are anecdotal reports, but in my opinion, I will take whatever achievable measures that I can take to maintain or improve my brain health, at least not make it worse. This means I won't become anemic, I will eat nutritiously, and I will avoid diabetes.

Regarding short term memory loss: make good use of notes, on paper snd on your smartphone, and a calendar. At the same time, don't overload yourself trying to remember too much minutiae. This is what I do. It's not perfect, but it's helping! Also, the Exelon helps.

Iris

Janutt

hi Iris,

yes, I did join the local ymca here about 2 months ago. I do swimming & “silver sneakers” with my DH. I have done the cardiac rehab almost 2 years ago. Wow! Can’t believe it will be 2years. This type of heart attack can’t be prevented. But I do make sure I exercise. I have always been active. I had ran the day of my heart attack. The low bld levels has been as long as that if I can remember. It has never been brought up at well. I have mentioned this too. I also had a hysterectomy when I was in my late 30’s so idk I was never a person who took vitamins. Yes, I’m glad I am back! I have post it notes and I write things on many calendars that I will see

DrMichaelSG

Hi Janutt, so sorry for not weighing in sooner, but I had a major surgery last Tuesday (all things considered, recovery is going well).

So glad as well that you didn’t have another heart attack.

Iris, you're the voice of reason. Spot on in every way. Thank you for being here -- and for your advisement.

I'll likely post a new thread about some things soon, but for sake of brevity (as I said before, I ramble like I've never done before - e.g., I use 500 words when only 10 will do!), I need to think through some of them. For now, I should say that I've only very recently come to appreciate just how closely related body fuctions actually are....and this even though i have had an infinite number of science courses (cell bio and medical physics were the worst!)....yet, until now, I had only an intuitive sense of before as to how things like sleep apnea, RLS, parasomnias, RBD, ST memory loss, epilepsy, migraine, hypertension, etc.are interconnected.

Seems strange for me to say this NOW, but it's very true. The body is infinitely complex. It's an immensely complex system whose individual parts (organs) somehow send signals to each other over nervous system pathways that we never even think about (autonomic system). Neurology governs everything -- I have a much greater appreciation of these relationships since the onset of my symptoms a year ago. Perhaps because now, I’m LIVING it (now need CPAP for sleep apnea, have UMND-ALS, now having parasomnias (weak knees/ cataplexy), RLS, REM Behavioral Disorder, POTS, and now rapidly declining ST memory (my DW sees this worsening).

One year ago, I was fine -- and yet this morning, as I reached the top of the steps on the second floor of my home, I couldn't remember why I had so badly needed to climb them. After arriving to the second floor nearly breathless (because of muscle fatigue), I turned around and went downstairs again (ALS can make things a bit more difficult!). I'm having rapidly cycling periods of confusion that are alternating with periods of (~75%) lucidity, ongoing hallucinations (which are mostly auditory in nature now), an increase in head tremors (strangely enough, having slight head tremors of ~2-3 secs. in duration, these mostly when I am walking down steps...will have to think on that, but there must be a reason....as not having such tremors elsewhere). The list goes on and on....honestly not complaining, just relating this, as it all seems so weirdly foreign to my experience.

It's all so very complex, so very odd.....completely surreal. I suppose it's brain fog in action. And I must admit that I'm more fascinated by these things today than I've ever been....and I've been in the HC field for several decades. :)

Mike

Iris L.

Mike, this is something that I have learned. I have learned to deliberately FOCUS on taking steps to maintain my independence. I cut out extraneous steps and activities that only use up my precious energy because my stamina is low. I live on the second floor in a one story condo. Sometimes I am too fatigued to leave my home and go downstairs, because I know I have to come upstairs again. But on other days, I can take the stairs. In your case, I would suggest that you think about an accommodation for the stairs. Perhaps a StairLift? You don't want to risk falling.

When I am fatigued, I don't think well. Have you noticed if your symptomstology is related to fatigue?

Iris

DrMichaelSG

Hi Iris, thank you! Because I have ALS, I try to conserve my energy. But now, I usually FORGET to conserve my energy (if that even makes any sense 🙄!).....my wife makes me lists of important things so that I remember them (she bought a board for that), but now I forget to check the checklists.

By symptomatology, I belieive you're referring to cognition, and not to physical sx.? (maybe both) ...Either way, my muscles are always fatigued, because I have ALS. But memory issues complicate these things even more...i.e., I have to do many things twice (many things more than twice) and I end up getting more physically fatigued as a result. Or I do things I don't have to, like climb the stairs. Or I just plain forget why I needed to go up the stairs at all.

On balance, I do think physical and mental fatigue cause me more confusion - if that's what you're asking. One feeds off of the other. Things happen too fast. Maybe I'm confused again (?) right now, and I'm not answering fully (probably so as I just had to reread your question)!....sometimes I feel confusion coming on (and I sometimes also get a frontal HA)...and I know I'm confused. But at others, I do not know at all. Said differently, I think I'm confused about whether --and when-- I'm confused! 🤔

My wife can't always decide this either. Not sure if I'm making sense...will read later, and clarify (IF I do not forget). 😮..........(🙂)!!!

DrMichaelSG

Recovering from a major surgery...(did I mention this before?) And still having a lot of pain (even more than the day of the surgery and day after). The surgery has complicated everything even more. But once I get through recovery, I should be good to go (sort of)....! 😉

Iris L.

Mike, by symptomatology, I meant everything thst bothers you. You cannot relieve all of your symptoms but you may lessen your discomfort by strategizing. Are you familiar with the Spoons concept? Don't waste your spoons!

Do you remember records? I say that we are living at 33 1/3 rpms in a 78 rpms world--meaning we are functioning at a much slower rate than everyone else. This is just how it is. I try not to overload my memory. It's not worth being upset.

Iris

DrMichaelSG

Oh yes....I remember 78s...spinning FAST. That's an awesome analogy. And yes, the spoons metaphor is an exceptional one as well.

I did know what you meant by the term symptomatology...but I was asking whether you we're referring to physical or cognitive symptoms. I just wasn't clear as to whether I was responding accurately to your question, that's all.

BTW, I'm still thinking re. posting on the other stuff....but have a lot of distractions right now (like needing to find my "lost" phone, only to find it where I always keep it....it was charging)! Oh man... 🙄

Thank you, Iris!

Mike

Janutt

Hi DrMichaelSG,

I hope you're feeling better after your major surgery. I am always losing things to only find them where I left them. It's a daily occurrence for me as I would imagine for everyone else. My cardiologist believes I may have had another SCAD (spontaneous coronary artery dissection). I am going to have an ECHO done soon. The cardiologist has put me on a new medication for angina. It's new and should help, but the pharmacist informed me that this medicine will increase the effects of my other medications so, I decided not to take this and I emailed my doctor about this. Waiting now for a response. I am not sure if anxiety made me more worrisome about this. I would have not worried before.