Anxiety Management for ApoE4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Grechel
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Anxiety Management for ApoE4

Post by Grechel »

Hi ApoE4 community,

I have been reading through these boards since I learned about my E4/4 genotype a year ago. I have been really impressed and inspired by the amout of support/knowledge/critical thinking here. I am a female in early 30s so I try to have a healthy life style as much as I can and not very worried about myself right now. I am actually a neuroscientist working on other neurodegenerative disorders. Never worked on AD, though.

Since I learned about my status I have been worried about my parents/grantparents without telling them about indirect genetic info I have about them. They have been ok so far but my 87 years old grantfather is not as sharp as he used to be lately -maybe very early stage AD. Last few weeks he has been anxious about some obsessive ideas and not sleeping. I am wondering whether an SSRI or any other anxiety meds would be helpful or would harm an old potential ApoE4 person. I know research is blurry but wanted to reach out to this wonderful community if any of you know anything about managing this kind of obsessive anxious behaviour.

Thank you! I am happy to finally post instead of lurking. :)
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Julie G
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Re: Anxiety Management for ApoE4

Post by Julie G »

Welcome, Grechel! As you're probably aware, the research has been mixed re. antidepressants and dementia, but tend to lean towards an increased risk as you can read here. There are, however many supplements that have been found to be neuroprotective, that can also address anxiety and improve sleep. The adaptogen, ashwagandha, may be particularly helpful. For sleep, magnesium, melatonin, and GABA are others to consider. Morning light exposure and exercise could also help. Your grandfather is very lucky to have your support and guidance.
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Re: Anxiety Management for ApoE4

Post by NF52 »

Grechel wrote:...
Since I learned about my status I have been worried about my parents/grantparents without telling them about indirect genetic info I have about them. They have been ok so far but my 87 years old grantfather is not as sharp as he used to be lately -maybe very early stage AD. Last few weeks he has been anxious about some obsessive ideas and not sleeping. I am wondering whether an SSRI or any other anxiety meds would be helpful or would harm an old potential ApoE4 person. I know research is blurry but wanted to reach out to this wonderful community if any of you know anything about managing this kind of obsessive anxious behaviour.

Thank you! I am happy to finally post instead of lurking. :)
Welcome, Grechel, from an ApoE 4/4 woman who is old enough to be your mom and still enjoys browsing Google Scholar, Pub Med and serving on groups with smart people like you! Your parents and grandparents must be thrilled to have a woman in the family showing that women continue to advance frontiers of science!

I'm sorry that your grandfather is showing some signs of early dementia in his obsessive behavior and sleep difficulty. As you know, advanced old age is itself a risk factor for dementia, although it may well be that he has some neuropathological features of both vascular and mixed dementia, which tends to be seen more in those who begin to show symptoms in their late 80's. A 2019 article on a study in Finland of the "oldest old" found that ApoE 4 status predicted amyloid and tau pathology and cerebral macroinfarcts, found in about 30% of ApoE 4 carriers, but did NOT predict a diagnosis of dementia, which appeared highly multifactorial in this group of hardy individuals. Prediction models for dementia and neuropathology in the oldest old: the Vantaa 85+ cohort study

It may be helpful to think of your grandfather as both cognitively resilient and resistant to have arrived at age 87 and only now show some early signs of difficulty. As a former special educator, I always encouraged staff and families to look at a strengths-based assessment: what is working well and how can we extend or scaffold that in situations that are more difficult? One way to start is to look at Environment, Immediate Antecedents, Frequency, Intensity and Duration of problem behaviors, and Competing Alternative Behaviors.

His environment may be causing some visual spatial confusion, or not enough cues to help his circadian rhythm. If his obsessions are that people have moved his things, it may be helpful to label furniture, or to reduce some of the clutter that some find comforting until it's overwhelming. If he's agitated in the early evening or not tired, it may be helpful to try to get him into a senior center for some physical and social stimulation during the day, or even to a regular "coffee hour" with friends his age early in the day. Just like most of us, having natural light, exercise and social activity help our mood and tire us out. Here's an excerpt from a RCT about positive, well-tolerated lighting interventions that increased daily activity, helped mood and improved sleep.
The present results demonstrate that exposures tailored to maximally entrain the circadian system, especially when carefully delivered and measured in the field, can significantly improve sleep quality, depressive symptoms, and agitation behavior in patients with ADRD. The light was also well tolerated by the participants, which is crucial for the effective delivery of a lighting intervention in real-world applications.
Effects of a Tailored Lighting Intervention on Sleep Quality, Rest–Activity, Mood, and Behavior in Older Adults With Alzheimer Disease and Related Dementias: A Randomized Clinical Trial

Immediate Antecedents may mean someone spending some time figuring out what happens just before an obsessive period. Are there questions asked of him? Is there a transition from one activity to another? Do the obsessive thoughts bother him or just represent some forgetfulness (like asking why he's going somewhere every 30 seconds)? My husband had a 93 year-old aunt who was obsessively paranoid after a right hemisphere stroke resulted in lack of insight and sudden cognitive changes. She responded much better to my mother-in-law saying "I'll talk with the doctors about that in the morning" and then asking about dinner, or playing bingo, rather than trying to explain why she was wrong in her thinking. Some researchers have found that use of music or visual reminiscences to calm and redirect obsessive thinking helps. Here's an excerpt about that:
Our proposal is based on two foundational concepts—reminiscence therapy and Dr. Oliver Sack’s music research. Reminiscence therapy is used to recall past memorable events using prompts such as photos and music... Irrespective of their stage in AD, all people are able to respond and react to musical stimulation in improving cognition, behavior, and mood in AD [18]. Research has shown individualized music therapy is the most effective [19]...
A Mobile Multimedia Reminiscence Therapy Application to Reduce Behavioral and Psychological Symptoms in Persons with Alzheimer’s

As Julie G also mentioned, small doses of melatonin have been helpful to some, although it can also cause diarrhea. Here's a recent post from a 70 year old user who has found a transdermal patch helps his sleep:
https://www.apoe4.info/forums/viewtopic ... nin#p76697 As for other medications, you may want to talk to your parents about seeking out a knowledgeable geriatrician who has experience in balancing the risks and benefits of medications in someone your grandfather's age and who can look at all the medications he is currently taking to see what effects they may be having on his recent changes. It might also be helpful to rule out causes of general anxiety such as palpitations from heart arrhythmias with an easy ECG--my mother was diagnosed with that at age 80 and successfully treated with a beta blocker.

Good luck to you and your family! The journey you are starting with your grandfather may be uncertain, and yet bring deep closeness and love.
4/4 and still an optimist!
Grechel
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Re: Anxiety Management for ApoE4

Post by Grechel »

Julie G wrote:Welcome, Grechel! As you're probably aware, the research has been mixed re. antidepressants and dementia, but tend to lean towards an increased risk as you can read here. There are, however many supplements that have been found to be neuroprotective, that can also address anxiety and improve sleep. The adaptogen, ashwagandha, may be particularly helpful. For sleep, magnesium, melatonin, and GABA are others to consider. Morning light exposure and exercise could also help. Your grandfather is very lucky to have your support and guidance.
Hi Julie,

Thank you for warm welcome and suggestions! Will def look into these supplements.
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Re: Anxiety Management for ApoE4

Post by Grechel »

Hi NF52,

Thank your for welcoming me and this very detailed response!

Very interesting finding with Finland study. It is almost seem like ApoE4 did not lead to AD in classical definition in these late onset cases.

The behavioral and psychological interventions you mentioned are very insightful. I should read these papers as well. This makes me realize that we as scientific community sometimes focus a lot on the details of genes and molecules, spend years trying to find a magic bullet to hit that mechanism. Reality is that we will all continue to benefit from these behavioural/life-style modifications even if someone makes a good drug one day.

Apart from science-y talk, thank you for being supportive and constructive! Although I am worried now, I am definitely grateful for all the healthy and happy years we get to have with him.
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Re: Anxiety Management for ApoE4

Post by JuttaH »

I made a bee-line for this topic as someone who is ApoE4/E3. I've been on antidepressants for almost 20 years until I stopped about two years ago. The older I get, the more I suspect that being on so many antidepressants for so many years actually made me more cognitively impaired than anything else. What was even more bizarre was that despite being on these different drugs for years, I was able to wean off them (via psych approval) with zero side effects. Wellbutrin, Celexa, Effexor- I could drop practically cold turkey with maybe no more than a slight headache. Eventually, I tried rTMS, which worked for a only short period of time. TMS usually requires a lowering of one's antidepressant dose, so I tapered it off from then.

My symptoms of forgetfulness, forgetting words, etc., seemed so bad these past two years that I went to a neuropsychologist to have cognitive testing. Surprisingly, it came out similarly to IQ tests I had in elementary school, so my perception of cognitive decline must be subjective. I only had one hour of sleep the night before, so I imagine it would have been better if I had slept. At least I can get a follow up appointment in a few years to see if my abilities have decreased. Neuropsychologists can evaluate people for cognitive functions... if you have ADD/ADHD or a history of Alzheimers in your family, insurance might cover it if you live in the US.

I already had a diagnosis of ADHD when an adult, so I've been on Adderall for years. I wouldn't want to stop that at this point, since I have to function at work. After clearly having signs of ADHD as a young kid, I went undiagnosed for years, and somehow compensated for my lack of attention span. Once I entered the "work world", I knew I had a severe problem. Now it's not so much inattention is my problem, but that being forgetful is.

Anyhow, if I had to do this all over again, I would have demanded that I be tested for drug compatibility before taking any Prozac, Celexa, Lexapro, Effexor, Wellbutrin.... Honestly. I would advise anyone to even "make up" stories about their family members being tested as antidepressant-resistant if that's what it takes to make your doctor listen. Maybe unethical, but the doctor needs a legit diagnosis to "justify" those kinds of tests to insurance companies, and family history might just be enough.

A few years ago, I had one or two of those genealogical DNA tests, and one that was through a free study. When I ran all three tests through programs like Promethease, it showed that (not only was I a carrier of ApoE4/E3) but that I'm practically immune to the effects of all SSRIs and similar drugs, that anti-psychotics can make me gain weight, that I carry abnormal genes for both folic acid processing MTHFR and MCAD deficiency. The number of genes I carry that make me resistant to antidepressants is staggering. Oh, yes, I'm also a confirmed carrier of Alpha-1 antitrypsin deficiency AND ATM mutated carrier. Fun times.

To be honest, the results Promethease gave me were very true to my personal experience and family history. My father's brother died of Alzheimers, and many people in his large family clearly had severe issues with it by the time they reached their 70s. Alpha-1 coincides with lung issues, and I had pneumonia 3x before the age of 30, one parent died of lung cancer, one grandparent died of lung cancer in his early 60s. Being an MCAD deficiency carrier didn't shock me, as I have a very difficult time functioning if I fast for large periods of time, and my muscle mass never increases with exercise.

One good benefit I've had from this testing was that it helped me decide what kind of supplements would be best for me, and which I should avoid. For example, it seems that taking regular folate would be a bad idea for me. Instead, I've tried Methylfolate, which seems to lift brain fog very quickly for me. L-Carnitine is supposedly a good supplement to take if you're an MCAD carrier, so I'll try to take that.

In the best case scenario, I would seek out therapy, try biofeedback (which is supposed to be great for PTSD and CPTSD sufferers), or something along those lines to deal with my anxiety and depression. Family history is a huge stumbling block for me-- one that no pill can "fix". However, my income can't really handle all those copays and long drives to insurance-approved therapists. It's also extremely difficult to find therapists who deal with EMDR, which I once tried and really thought was helpful.

One drug I DO find helpful is low-dose Trazodone-- and this is for SLEEP. There was a point in time where I was taking Benadryl every night to go to bed (not realizing it was a BAD IDEA for Alzheimer's carriers). I stopped when I required 2 pills for it to work. Melatonin didn't seem to work for me. A coworker who was a nurse suggested I ask our mutual primary care doctor about low-dose Trazodone. I would go at least one night a week with no sleep at all, so it was getting pretty bad. Trazodone seems to work really well with few side effects that I notice, and I haven't developed a resistance to it... nor do I seem to need it every night. Somehow, it silences the anxiety-thoughts that I sometimes get when I am trying to fall asleep. I think it's primarily prescribed to people with schizophrenia like symptoms in much larger doses.
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Re: Anxiety Management for ApoE4

Post by AKA »

JuttaH wrote:I made a bee-line for this topic as someone who is ApoE4/E3. I've been on antidepressants for almost 20 years until I stopped about two years ago. The older I get, the more I suspect that being on so many antidepressants for so many years actually made me more cognitively impaired than anything else. What was even more bizarre was that despite being on these different drugs for years, I was able to wean off them (via psych approval) with zero side effects. Wellbutrin, Celexa, Effexor- I could drop practically cold turkey with maybe no more than a slight headache. Eventually, I tried rTMS, which worked for a only short period of time. TMS usually requires a lowering of one's antidepressant dose, so I tapered it off from then.

My symptoms of forgetfulness, forgetting words, etc., seemed so bad these past two years that I went to a neuropsychologist to have cognitive testing. ...........
One drug I DO find helpful is low-dose Trazodone-- and this is for SLEEP. There was a point in time where I was taking Benadryl every night to go to bed (not realizing it was a BAD IDEA for Alzheimer's carriers). I stopped when I required 2 pills for it to work. Melatonin didn't seem to work for me. A coworker who was a nurse suggested I ask our mutual primary care doctor about low-dose Trazodone. I would go at least one night a week with no sleep at all, so it was getting pretty bad. Trazodone seems to work really well with few side effects that I notice, and I haven't developed a resistance to it... nor do I seem to need it every night. Somehow, it silences the anxiety-thoughts that I sometimes get when I am trying to fall asleep. I think it's primarily prescribed to people with schizophrenia like symptoms in much larger doses.
Hello JuttaH,

Welcome to the apoe4 forum! You have certainly been on the road to wellness for some time now, thanks for joining the conversation and sharing your experience. We never know what information will help others going through similar experiences so it is great to see your post. Since you are a first-time poster, I'd like to share a few tips that may help with navigating the site.

First I'd like to point out the "How-To" Get the most out of the ApoE4.info websitein the Wiki section. It offers pointers on a number of things including, the how and why of using the quotes button when responding to another member’s post, following topics of interest, and more. Second, if you haven't seen the Primer, I'd recommend taking a look. It was written by a member physician and is a grand resource for all things Apoe4. Finally, there is a page in Wiki about stress and apoe4 that you may want to review as stress and anxiety are pretty close cousins IMHO. Hope this is helpful!

Again, a warm welcome to you JuttaH!
Look forward to reading more of your posts,
AKA
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Re: Anxiety Management for ApoE4

Post by Brainz »

I took Zoloft for more than a decade to address depression and anxiety (that I now suspect was attributable to alcohol and poor diet).

Anyway, after going paleo/keto, I was able to stop taking Zoloft. But the anxiety came back without the Zoloft. I had a feeling of being tense, my mind would race, and I would wake up at 3am worried about something. The severity seemed linked to alcohol and caffeine intake (both of which were modest) as well as overall life stress.

After some research, I began supplementing before bed with Vit B1 (thiamine) . I also took an extra dose if I felt anxious during the day. My anxiety was greatly reduced within a day or so (and would return without the B1).

After some further research, I switched to taking Benfotiamine (synthetic, fat soluble B1) at night as I guessed it would be more consistent/stable than B1 which is water soluble. After an adjustment period, where I would also take B1 as needed if feeling anxious during the day, I was able to get by with only Benfoatimine at night. I now rarely have anxiety, and can skip a day or two without taking Benfoatimine - - I've not tried going longer. If I'm having a really stressful week or if I've been bad and drank too much booze the night before (rare these days) some extra B1 help "spot treat" the anxiety.

Thought I'd share as it worked wonders for me.
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Re: Anxiety Management for ApoE4

Post by daydreams1991 »

I only pop into this website every once in a while so I hope you read this comment!

I found out I had 3/4 with what I thought was zero family history two and a half years ago in my late 20's. Asking around, I then learned to my horror that my great grandmother passed away with some dementia at 73! Scary!

I jonesed about it for about a year, not seeking help and keeping it hidden from my family so I wouldn't scare them. I couldn't hold it in forever so I talked with the parent who I already knew was 3/3 (I did 23andme because I was inspired by her test! Thanks, Mom! Ouch.). It surprisingly went over well and she told my dad who, as I learned, was already suspecting that he had the gene from it and told me about my great grandmother.

After that, it took some therapy to get over it. Everyone's mileage will vary. My friend's brother is a 4/4 and he doesn't really seem to care. Being 3/4 was enough to send me into a depressive spiral since I already have massive phobias about my health. I found that cognitive behavior therapy was my best shot. I worked together with a counselor on BetterHelp. Basically, what I did and what I still do today is that I read a list of things that I know to be true like with statistics, family history, etc. It's great and while I'm not at 100%, I feel more confident with the information I have now. I feel like I have the power to take action and, at the very least, push the disease back by years! It does get easier!
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Re: Anxiety Management for ApoE4

Post by floramaria »

daydreams1991 wrote:I only pop into this website every once in a while so I hope you read this comment!
I found that cognitive behavior therapy was my best shot. I worked together with a counselor on BetterHelp. Basically, what I did and what I still do today is that I read a list of things that I know to be true like with statistics, family history, etc. It's great and while I'm not at 100%, I feel more confident with the information I have now. I feel like I have the power to take action and, at the very least, push the disease back by years! It does get easier!
Hi daydreams1991, Welcome back to the website and thanks for posting about your experience. The strength of the forums comes from individuals contributing their experiences and resources as you have done. What you have shared about the benefits you’ve gotten from cognitive behavior therapy is interesting and may be the solution for some other community member . Thanks also for posting about BetterHelp which I’d never heard of before your post.
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