Newbie, just saying hello

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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rho
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Newbie, just saying hello

Post by rho »

Hi everyone,

One reason I have joined this forum is for a sense of community through the unfortunate commonality we share in APOE E4 status. I am 4/4; tested in 2015 and just recently turned 49. Although I generally have mixed feelings about social media; I am hoping this offers a slightly different angle with a more substantive bent. My goal is to continue to learn, adapt, and to make meaningful connections in the process, as well as to eventually contribute to the discourse and data mining of the additive resources herein.

I was a little bummed when I discovered my status. There were definitely moments of gloom; though the realization also coincided with some other concurrent life challenges. Perhaps my background in molecular biology and my zeal as a life long learner provide some foundation for the notion that genes are not destiny and that there is a solution to every problem...as genes clearly function within the context of environment and behavior. That said, our current cultural habits seem generally not to provide a very conducive environment for long term positive outcomes when carrying E4 alleles. But isn't that the crux of why we are all here? To learn how to offer a responsive 'zag' to counteract the over arching 'zig' we face in our current environment and with our embedded behavior patterns. And to hone in on what that 'zag' should actually look like as a group and as individuals to shift the bleak odds toward optimism.

My father died in June 2020 at 84 from dementia. He had some level of cognitive impairment for at least 12 years. He also did not eat well, was often volatile and unhappy, and had as such, endured a myriad of health issues for the last 16 years of his existence; technically succumbing to COVID. My mother, also a carrier, is still living at 83. And though she has never shown any interest in proper diet or exercise (still routinely eats fast food) is comparatively more sociable and happier generally with no signs of dementia. If I were female then maybe I would take a modicum of consolation from the fact that my grandmother lived to 102 without any mental deterioration...I know my mother does. ...Or does it simply justify her complacency?

I've personally hit the lottery it seems. Aside from the looming specter of E4, I'm also fairly unconventional (I consider the fact an asset usually), introverted, and have battled with depression and anxiety for as long as I remember. Some time after completing graduate school I was on permanent disability for 4 to 5 years. When I had lost everything and even psychiatry had turned its back, I decided to dig myself out of the hole. I started working at an organic garden part time. Within 1.5 years I had a stable job in the wine industry and relinquished my disability status. Over a span of 10 years I successfully self-titrated off the handful of anti-psychotics, and anti-depressants. The impetus was to restore total health and specifically to reduce susceptibility to associated diabetes risk. However, I still remained on a benzodiazepine (Klonopin) for anxiety, which I am now in the process of removing permanently because of my age and for its correlation with dementia. It is definitely a tough go. Having been on the drug for over 20 years I am experiencing severe and insidious protracted withdrawal symptoms. And I am not even completely off the drug. In some sense it is uncharted territory. There is just not a huge number of people who have been on the drug for so long and are now trying to get off. I suppose there are analogies to the APOE E4 community in this regard, and due to its potential impact on quality of life and long term outcomes. This collective strain has prevented me from taking a further step down in dosage over the past year. Having worked in the beverage industry (primarily wine industry), I am beginning to reassess my involvement. Mixing alcohol with benzo withdrawal is like gasoline on a fire. It is simply not tenable to extinguish the fire under such circumstances. Luckily the older I get the less I drink; firmly sided with near or total elimination of alcohol consumption.

I am at another cross roads in life and it is clear a change of perspective is warranted. I am not sure it is appropriate to have written this much... Hopefully if you have endured up until this point it was not too boring, and that you find in the latter part of your day something of greater interest worthy of your attention!

On a lighter note:
I am into hiking and outdoor activities; knowledge, ideas, writing, art, culture, traveling, food and beverages. I have worked out with an emphasis on cardio (3 to 6 hours a week) for the past 15 years. I eat 2 meals a day, do IMF, and focus on a diet of vegetables (not vegetarian restricted though), high fat, moderate protein, and low carbs. I try to exclude wheat and most grains. When I eat grain I usually opt for white rice; just looking for clean, straight forward carbs. I take basic supplements: such as multi-vitamin, Omega 3's, and some anti-oxidants. I drink mainly water and tea and do not have a sweet tooth. I consume food based probiotics such as kimchi for gut health. I take hot baths before bed.

Thank you,
rho
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Re: Newbie, just saying hello

Post by SBee »

rho wrote: Wed Jan 05, 2022 3:14 pm Hi everyone,

One reason I have joined this forum is for a sense of community through the unfortunate commonality we share in APOE E4 status. I am 4/4; tested in 2015 and just recently turned 49. Although I generally have mixed feelings about social media; I am hoping this offers a slightly different angle with a more substantive bent. My goal is to continue to learn, adapt, and to make meaningful connections in the process, as well as to eventually contribute to the discourse and data mining of the additive resources herein.

I was a little bummed when I discovered my status. There were definitely moments of gloom; though the realization also coincided with some other concurrent life challenges. Perhaps my background in molecular biology and my zeal as a life long learner provide some foundation for the notion that genes are not destiny and that there is a solution to every problem...as genes clearly function within the context of environment and behavior. That said, our current cultural habits seem generally not to provide a very conducive environment for long term positive outcomes when carrying E4 alleles. But isn't that the crux of why we are all here? To learn how to offer a responsive 'zag' to counteract the over arching 'zig' we face in our current environment and with our embedded behavior patterns. And to hone in on what that 'zag' should actually look like as a group and as individuals to shift the bleak odds toward optimism.

My father died in June 2020 at 84 from dementia. He had some level of cognitive impairment for at least 12 years. He also did not eat well, was often volatile and unhappy, and had as such, endured a myriad of health issues for the last 16 years of his existence; technically succumbing to COVID. My mother, also a carrier, is still living at 83. And though she has never shown any interest in proper diet or exercise (still routinely eats fast food) is comparatively more sociable and happier generally with no signs of dementia. If I were female then maybe I would take a modicum of consolation from the fact that my grandmother lived to 102 without any mental deterioration...I know my mother does. ...Or does it simply justify her complacency?

I've personally hit the lottery it seems. Aside from the looming specter of E4, I'm also fairly unconventional (I consider the fact an asset usually), introverted, and have battled with depression and anxiety for as long as I remember. Some time after completing graduate school I was on permanent disability for 4 to 5 years. When I had lost everything and even psychiatry had turned its back, I decided to dig myself out of the hole. I started working at an organic garden part time. Within 1.5 years I had a stable job in the wine industry and relinquished my disability status. Over a span of 10 years I successfully self-titrated off the handful of anti-psychotics, and anti-depressants. The impetus was to restore total health and specifically to reduce susceptibility to associated diabetes risk. However, I still remained on a benzodiazepine (Klonopin) for anxiety, which I am now in the process of removing permanently because of my age and for its correlation with dementia. It is definitely a tough go. Having been on the drug for over 20 years I am experiencing severe and insidious protracted withdrawal symptoms. And I am not even completely off the drug. In some sense it is uncharted territory. There is just not a huge number of people who have been on the drug for so long and are now trying to get off. I suppose there are analogies to the APOE E4 community in this regard, and due to its potential impact on quality of life and long term outcomes. This collective strain has prevented me from taking a further step down in dosage over the past year. Having worked in the beverage industry (primarily wine industry), I am beginning to reassess my involvement. Mixing alcohol with benzo withdrawal is like gasoline on a fire. It is simply not tenable to extinguish the fire under such circumstances. Luckily the older I get the less I drink; firmly sided with near or total elimination of alcohol consumption.

I am at another cross roads in life and it is clear a change of perspective is warranted. I am not sure it is appropriate to have written this much... Hopefully if you have endured up until this point it was not too boring, and that you find in the latter part of your day something of greater interest worthy of your attention!

On a lighter note:
I am into hiking and outdoor activities; knowledge, ideas, writing, art, culture, traveling, food and beverages. I have worked out with an emphasis on cardio (3 to 6 hours a week) for the past 15 years. I eat 2 meals a day, do IMF, and focus on a diet of vegetables (not vegetarian restricted though), high fat, moderate protein, and low carbs. I try to exclude wheat and most grains. When I eat grain I usually opt for white rice; just looking for clean, straight forward carbs. I take basic supplements: such as multi-vitamin, Omega 3's, and some anti-oxidants. I drink mainly water and tea and do not have a sweet tooth. I consume food based probiotics such as kimchi for gut health. I take hot baths before bed.

Thank you,
rho
Hello rho,
We welcome you warmly to this community!
Thank you for courageously sharing the details of your story...you have certainly experienced a number of challenges during your life and yet I sense your determination and love of learning has instilled some optimism in finding solutions to overcome the difficult situations you have faced, including the recent loss of your father. We are all here to support one another and I hope you find comfort in this!

Thanks also for sharing your current interests and the strategies you have employed to create better health and well being for yourself. I know other members will find inspiration in all that you accomplished thus far!

As an ApoE4.info support team intern, please allow me to share some of the tools/resources that can help you gain the most from the site:

The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

The How-To Guide offers tips on how to navigate forums and respond to posts including how to quote members (use the quotation icon in the upper right of any post) so they get an email notification of your post. It also demonstrates how to use the Search function for topics, and how to subscribe to topics of interest in the forums.

Finally, Our Stories includes stories of other community members. Through these stories, you may find encouragement knowing that others have faced similar challenges and that you're not alone.

rho, I hope you find these tools useful as you begin to explore the site and continue on your journey. Please feel free to reach out if you have any questions. Thanks again for joining the group...we're so glad you found us!
Take care and be well.

Warmly,
Sue
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rho
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Re: Newbie, just saying hello

Post by rho »

Hi Sue,

Thanks for the good resources to start, as well as the words of encouragement. My intent was just to be matter of fact, not to seek sympathy from a woe is me perspective. Life can be inexplicable at times, but what can't be explained even with great effort need only be shrugged off graciously with humor.
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Re: Newbie, just saying hello

Post by SBee »

rho wrote: Wed Jan 05, 2022 8:23 pm Hi Sue,

Thanks for the good resources to start, as well as the words of encouragement. My intent was just to be matter of fact, not to seek sympathy from a woe is me perspective. Life can be inexplicable at times, but what can't be explained even with great effort need only be shrugged off graciously with humor.
You are most welcome, rho! And thank you for clarifying your intention in sharing your story :)
I agree that sometimes accepting life's circumstances with humor and grace can help ease the movement along our path!
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Re: Newbie, just saying hello

Post by Dee-Nice1967 »

I have also been on Klonopin long term and my new integrative Med doctor is "toying" with the concept of weaning me off. My other doctor didn't have a concern about it. What is the process for weaning off? my dose was .5mg. I know that going off will cause anxiety so I wonder if there is something else to counteract that affect.
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Re: Newbie, just saying hello

Post by floramaria »

rho wrote: Wed Jan 05, 2022 3:14 pm Hi everyone,……..on a benzodiazepine (Klonopin) for anxiety, which I am now in the process of removing permanently because of my age and for its correlation with dementia. It is definitely a tough go. Having been on the drug for over 20 years
rho
. Welcome rho! I read your post with great interest. Especially the part about organic farming because I supported myself for 25 years on my organic farm. It was great to read that farming had such benefits for you. You’ve had an amazing journey!

I added Dee-Nice here because she had asked you a question about Klonopin. Her post is right above mine. If you want to respond to her, it is important to use the quote function in the upper right hand corner of her post. That way she will be notified that someone replied to her post. When you quote someone, you can edit their post, as you see I did with yours , rho.
Both of you should be notified of this post.

Hopefully, my including you both here will connect you so you can share your experience. That’s what this community is all about!!

Best wishes to both of you!
Dee-Nice 1967/ wrote:I have also been on Klonopin long term and my new integrative Med doctor is "toying" with the concept of weaning me off. My other doctor didn't have a concern about it. What is the process for weaning off? my dose was .5mg. I know that going off will cause anxiety so I wonder if there is something else to counteract that affect.
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Re: Newbie, just saying hello

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Dee-Nice1967 wrote: Mon Jun 13, 2022 12:47 pm I have also been on Klonopin long term and my new integrative Med doctor is "toying" with the concept of weaning me off. My other doctor didn't have a concern about it. What is the process for weaning off? my dose was .5mg. I know that going off will cause anxiety so I wonder if there is something else to counteract that affect.
There seems to be a trend for some medical doctors to think that benzo withdrawal is not unique relative to other medications with the potential for dependency or abuse, as far as the difficulty it presents to the patient seeking to be free of its influence. Klonopin has a long half-life and if you have been on it for a decent duration, even with a low dose it can pose some baffling protracted side effects that appear to indicate as deeply entrenched physiologically, and thus, difficult to contend with. The reality is everybody's experience is unique, and this statement is particularly true with klonipin withdrawal. Generally, long duration side-effects are more common than prevailing medical notions would suggest however. And titrating down until one is completely off takes some doing and some luck...and probably a fair amount of hard work; with no short supply of suffering. In my limited estimation drawing on my own progress and from several others in the same situation the lower doses are difficult to surmount or titrate beyond. I would suggest going slow and taking your time titrating with meager drops based on percent reduction rather than set mg amounts.

You should talk to your care provider about a plan for weaning off Klonopin. I do not want to give medical advice on this forum. I will try to circle back in a while to give more specific feedback about my experience and strategies including what helps and what hurts the process. I am really tired right now and have to leave for a small trip here shortly. Goodluck.
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Re: Newbie, just saying hello

Post by floramaria »

rho wrote: Wed Jun 15, 2022 12:45 am You should talk to your care provider about a plan for weaning off Klonopin. I do not want to give medical advice on this forum. I will try to circle back in a while to give more specific feedback about my experience and strategies including what helps and what hurts the process. I am really tired right now and have to leave for a small trip here shortly. Goodluck.
Hi rho, always good advise to talk to one’s health care provider especially when undertaking reducing a drug. As you say, everybody’s experience is unique. I look forward to your “circling back “ with more specifics on what helps or hurts the process for you.
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Re: Newbie, just saying hello

Post by rho »

Dee-Nice1967 wrote: Mon Jun 13, 2022 12:47 pm I have also been on Klonopin long term and my new integrative Med doctor is "toying" with the concept of weaning me off. My other doctor didn't have a concern about it. What is the process for weaning off? my dose was .5mg. I know that going off will cause anxiety so I wonder if there is something else to counteract that affect.
So yeah, when I posted earlier a little over a week ago was the night before a trip to the Olympics in Washington. We drove up and camped at Graves Creek and then did an ambitious ~30 mile day hike (out and back) in Enchanted Valley. total moving time was 9:40 and total time with rest or taking in the ambience was 11:30. ...More challenging because of the slog through mud and totally soaked feet. Didn't bring trekking poles or a rain jacket haha. But the really dumb part was driving back home immediately after the hike.

Anyway, exercise has always been my antidote to stress...I'm an endorphin junkie. I find warm baths before bed are very calming. I soak in water as hot as I can stand. I think developing a personalized sleep routine that works for you is crucial. In order to recover from long time medication use and the current lower doses of klonopin restful sleep, as with various other types of recovery, cannot be underestimated. I've had a lot of anxiety and muscle tension with my withdrawal so getting in the right head space mentally as well as physically calming my neuro-muscular system is important. ...to this end, yoga, stretching and some amount of meditation has helped. Probably preemptively mitigating stress is not a bad idea. So allowing for extra down time for this process or minimizing to some degree other external expectations is all in the service of healing...although not everyone affords this luxury clearly. Situations or behaviors that exacerbate stress and anxiety are inherently counter productive. Maximizing your ability to stay grounded is the key, but also a real challenge because your tolerance to stress suffers with withdrawal. Definitely avoid booze and drugs...seek clean living, but perhaps don't pile on too many changes at once. For instance, if your diet is not the greatest, perhaps wait until you are at a more stable point before making those hard choices... I've taken Relora if I am having a couple nights in a row of bad sleep. This is a proprietary supplement of phellodendron and Magnolia bark...the active compounds are berberine, honokiol and magnolol. These compounds have pleiotropic effects and those derived from magnolia bark at least seem to have affinity for the GABA receptor. I haven't dug too deep into the literature regarding the specifics of the pharmacokinetics so I can't tell you about the preferential subtypes or the half life presently. These compounds do have some interest from an AD preventative perspective as well. But first things first, I am not totally clear on the mid-term viability as an adjunct for klonopin withdraws coping due to the common mechanism here...it feels like maybe going backwards a little. Side note: I have read over 150 articles on AD and APOE4 and everything in between so perhaps I can pull out the choice bits and do a couple posts with the highlights. ...I'm good at synthesizing data into a viable picture. I hope this is enough to chew on for now. Not sure I provided anything truly eye opening, but little steps work too.
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Re: Newbie, just saying hello

Post by rho »

Dee-Nice1967 wrote: Mon Jun 13, 2022 12:47 pm I have also been on Klonopin long term and my new integrative Med doctor is "toying" with the concept of weaning me off. My other doctor didn't have a concern about it. What is the process for weaning off? my dose was .5mg. I know that going off will cause anxiety so I wonder if there is something else to counteract that affect.
With a taper I don't think you want to drop more than 25% at a time...many people would say 20%, and some would suggest conservatively doing 10%. I personally do not give myself a set time to pull back as I see how I feel before I move forward with going to the next rung. But that said it is important to establish the minimum time you maintain a set dose before progressing further regardless of how you feel. 4-6 weeks? Obviously, the smaller the drop and the longer you maintain doses prior to the next drop the less counter indications and hopefully smaller the bumps rattling you. We all seek less turbulence in our ride.
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