Newbie: APOE 4 + insomnia

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Majacobs
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Newbie: APOE 4 + insomnia

Post by Majacobs »

Hi everyone! I found this site through the Broken Brain 2 docu series.

I am 32 and I've struggled with insomnia for over five years. Since I knew this would increase my risk of Alzheimers, I decided to test my DNA for the APOE 4 gene. Last year I found out I have one copy. I'm looking to find out more about diet and any preventative measures to take to prevent Alzheimers in the future since my chances of developing it are very high.
DebS
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Re: Newbie: APOE 4 + insomnia

Post by DebS »

Majacobs wrote:Hi everyone! I found this site through the Broken Brain 2 docu series.

I am 32 and I've struggled with insomnia for over five years. Since I knew this would increase my risk of Alzheimers, I decided to test my DNA for the APOE 4 gene. Last year I found out I have one copy. I'm looking to find out more about diet and any preventative measures to take to prevent Alzheimers in the future since my chances of developing it are very high.
Hi Majacobs! Welcome to ApoE4.info. I am so glad you found us and hope that you will enjoy the wealth of information available here. The best place to start for more information on ApoE4 is our primer written by Dr. Stavia. Here you will find background information as well as prevention strategies. The primer prioritizes these strategies to help you get started by taking one step at a time. Just by being here and being willing to take preventative measures, you are less likely to experience cognitive decline. Your genetic predisposition is only a small portion of the equation. Whether or not those genes are turned on depends largely on lifestyle and environment- things over which you have control.

You may want to bookmark this how-to guide which will give you information on subscribing to threads, quoting when responding to another member so they are notified of your response, and other helpful ways to navigate the site. When you are ready, it would be great if you introduce yourself in the Our Stories thread.

Please reach out if you have questions. I look forward to hearing more from you in the future.
Deb
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CarrieS
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Re: Newbie: APOE 4 + insomnia

Post by CarrieS »

Majacobs wrote:Hi everyone! I found this site through the Broken Brain 2 docu series.

I am 32 and I've struggled with insomnia for over five years. Since I knew this would increase my risk of Alzheimers, I decided to test my DNA for the APOE 4 gene. Last year I found out I have one copy. I'm looking to find out more about diet and any preventative measures to take to prevent Alzheimers in the future since my chances of developing it are very high.
Good Morning Majacobs and Welcome to the Community!
I enjoy Dr Hyman's series and the information that he makes accessible to all of us. You never know when a pearl of information will come and how powerful that the Broken Brain 2 series brought you here. Another tip to find existing threads on Sleep would be to use the "spyglass" icon to the left of your name and search for Sleep or Insomnia (I found 3014 matches when I typed in Sleep).
Stavia's Primer (as noted by DebS) and the Wiki are great places to start gathering the information that you seek. I look forward to your participation in the Forums!
Carrie
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NF52
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Re: Newbie: APOE 4 + insomnia

Post by NF52 »

Majacobs wrote:Hi everyone! I found this site through the Broken Brain 2 docu series.

I am 32 and I've struggled with insomnia for over five years. Since I knew this would increase my risk of Alzheimers, I decided to test my DNA for the APOE 4 gene. Last year I found out I have one copy. I'm looking to find out more about diet and any preventative measures to take to prevent Alzheimers in the future since my chances of developing it are very high.
Welcome, Majacobs!

It must be very hard to feel that you've been in a battle with insomnia for a good part of your adult life, especially if you didn't have difficulty with falling asleep or staying asleep as a child. So first, know that many people on this site currently struggle also with insomnia or have in the past, and feel a strong sense of empathy with you. You don't mention what involvement your primary care provider has had with trying to sort out possible causes or offer suggestions. For some people, insomnia is characterized by difficulty falling asleep for hours; for others, it's not a problem with falling asleep but with waking up one or more times a night and being unable to easily get back to sleep. Others seem to have a different circadian rhythm and only function well if they sleep at different times, say from 3:00 AM-11:00 AM, making it difficult to function in a typical work schedule.
Here's a link to a forum thread that, while it seems to be about hypnotherapy for insomnia, actually has several helpful ideas about techniques.
Hypnotherapy for Sleep Disturbance

And here's another example of a Search result, using the magnifying glass icon in upper right tool bar by your name) for "Insomnia Treatment": Trazodone, a Tryptophan alternative for sleep for APOE4/4 on SSRI?

And while typical sleeping pills may be a problem for those of us with ApoE4, this article from the Mayo Clinic at least helps sort out what types of medications are used for what types of insomnia.
Prescription sleeping pills: What's right for you?

Just as importantly may be to have the help of a trusted therapist if you suspect that stress or other external factors in the last 5 years have contributed to your insomnia. Cognitive behavioral therapy, mindfulness and other techniques may help in those cases.

Finally, I want to try to reduce your fear that your risk of Alzheimer's in the future is "very high". Here's some very well-researched data from a meta-analysis of 1000's of people followed for decades, which was used to determine what the risk of either Mild Cognitive Impairment (MCI) or dementia (Alzheimer's or another type) by age 85 was for people with ApoE 4--if they are currently between the ages of 60-75. People who are 32 are roughly 35 years away from the lower-end ages of AD diagnosis. As someone who is 67 and ApoE 4/4, I and lots of other people my age and older on this forum are proof that you can be on Medicare and still be doing just fine on cognitive testing and in daily life.
Here's their data:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2).
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
So this means that even your parents (one of whom may be ApoE 3/4 and in her or his 60's), have a 75-80% chance of living to 85 (their "lifetime" risk due to life expectancies in the U.S.) without any kind of cognitive impairment. At your age, and with decades of good choices to make, your risk should be lower.

I hope you know this doesn't mean live on a diet of snickers bars and drive a motorcycle without a helmet! But if you follow the wise advice of Dr. Stavia in the Primer, you'll have a life with better sleep, fewer fears and more joy.
4/4 and still an optimist!
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