New here and scared

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Natasha
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New here and scared

Postby Natasha » Sun Jan 20, 2019 7:32 pm

Hello I found out a while ago that I have one copy of APOE 4. Unfortunately I also have chronic Lyme/Babesia. Additionally I have an anxiety disorder and take 5 mg of Lexapro which I just found out increases Alzheimer's risk. On top of that I take Klonopin but have been trying to wean off of it at what happens to be the most anxious time of my life. I'm down to .375 mg of Klonopin/day and have no quality of life due to a constant state of panic that I might end up drooling in a nursing home by the time I'm 50. My fear started because sometimes when I talk about something I will forget the point I was making and have to pause to think about it. I read on the Mayo clinic site that this may mean I'm destined for Alzheimer's :shock: I'm now afraid to talk to anyone because I will panic if I lose my train of thought. Please tell me I'm crazy. I would rather be crazy than demented.

Sorry I'm being so negative but I am just so scared.

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Re: New here and scared

Postby NF52 » Mon Jan 21, 2019 7:41 am

Natasha wrote:Hello I found out a while ago that I have one copy of APOE 4...I'm now afraid to talk to anyone because I will panic if I lose my train of thought. Please tell me I'm crazy. I would rather be crazy than demented.
Sorry I'm being so negative but I am just so scared.
Welcome, my young friend Natasha!

I can call you a young friend because I'm 66, so definitely older than that 50-year old drooling future self in a nursing home you fear and because, like you, I have had periods of my life when I had panic attacks and took medication for it--which along with anxiety and depression include about 20% of the population. And I also have ApoE 4/4. And yet, here I am still with a healthy brain and even went back to grad school at the age of 57 and did just fine.

So here's a few reasons why you are not crazy or going to be drooling at 50 (unless it's over a great meal!):

Losing your "train of thought" and having to "pause to think about it" means you're smart--not that you have dementia. Here's why: Your brain is always on multiple tracks: what am I saying this second, and what do I plan to say in the next 5 seconds, and what are other people saying or showing me with their body language. It's like driving on a freeway in rush hour! And just like driving, sometimes our immediate attention has a blip. Could be fatigue, could be you thought of something else, could be a cute guy walks in the room--doesn't matter because you're brain still held on to that memory. The fact that you can "pause and remember" means that you're brain is working behind the scenes just fine. Trust me on this; I did tests of memory for decades on kids, and even co-wrote some articles on how to support kids with memory issues. Your memory is fine!

The studies that got lots of attention in the press last year were done on people over age 66 and looked at whether they had taken two classes of drugs (of which Lexapro is one) in the previous 5 years. They found an "association" with the use of those classes of drugs and diagnosis of Alzheimer's.

Here's a few reasons why it's not accurate to assume that the drugs caused Alzheimer's, or would do so in 20, 30, or 40 years for someone much younger:
Drugs given shortly before a diagnosis of dementia may be treating one of the symptoms of dementia, which we know develops over a period of 10-15 years. People who are beginning to have difficulty finding their way home, remembering how to cook dinner, managing their finances often get depressed and anxious. Scientists believe that depression may be both a psychological effect of early cognitive impairment and, for some people, a sign of early changes in the brain's emotional center.
But that's like saying that people over the age of 65 sometimes fall and break their hips due to osteoporosis, and therefore anyone who falls in their 20's and 30's must have osteoporosis.

People who were over 66 when this study was done were born around the end of World War II or earlier! They lived their entire adult lives in environments in which smoking was common (and second-hand smoke was everywhere), heavy drinking wasn't considered unusual, water and air pollution wasn't a big thing. I'm old enough to remember when a river in Ohio caught fire due to pollution and kids regularly had high lead levels from old lead water pipes, leaded gasoline and lead paint. Smoked foods like sausage and bacon had chemicals several times higher than what is allowed now. Heart attacks were common for men in their 40's and 50's due to uncontrolled diabetes and high blood pressure. In other words, Natasha, you have almost nothing in common with the lives these people led and all those factors outside of their control may have set them on the path to dementia, which then caused anxiety and depression.

Finally, with one ApoE 4, you only have a mildly increased risk of some cognitive issues by the time you are 85, which is probably 50 years from now and decades after science will figure out how to avoid those. There is far more research on "protective factors" that prevent dementia: your intelligence, your sensitivity to others, your education, your ability to cope with several challenging conditions.

We are stronger when we remind ourselves of how strong we have already been; often for decades.

I would suggest calling your provider and asking about the reaction to decreasing Klonopin and see what their plans are. You may at some point be able to switch over to some other anti-anxiety drugs that help your symptoms more consistently. But for now, be kind to yourself, and rip up that picture of yourself drooling and replace it with a picture of yourself at 50 on a sunny beach somewhere--or whatever else would be your future happy self!

Hugs from a non-drooling old lady with ApoE 4/4!
4/4 and still an optimist!

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Re: New here and scared

Postby Fiver » Mon Jan 21, 2019 9:21 am

Hi. I've read some paper showing that use of SSRIs was associated with a slightly decreased incidence of AD. I'm not aware of studies showing that they cause or raise the risk of AD. I could have just missed some studies in my reading. But I really had been under the impression that SSRI use was not associated with a higher risk.

It's complicated because depression / anxiety may raise the risk and....who takes SSRIs, right? But I'm fairly certain that SSRI use itself, or addressing depression/anxiety in general, would not raise the risk but rather be helpful.

Others here may know more.
A little tired of reading studies. A little worried about the lack of research progress. Ever notice Forrest Gump's Alabama jersey number?

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Re: New here and scared

Postby Natasha » Mon Jan 21, 2019 2:14 pm

Thank you so much NF52. That is very comforting and kind of you but I feel that I have not been completely honest. I lose my train of thought more often than in the past, and lately it's constant like every time I open my mouth. I just got off the phone with a cousin and I lost my train of thought in the middle of a sentence. I asked her if she thought I was demented and she said no of course but then she knows I worry so maybe she was just trying to ease my mind. I actually really didn't do this that much not long ago.

Do you think the fact that it is getting worse means that I am close to nursing home time? How much longer do I have, worst case scenario? Could I just stay at this level for a long time? Also, is it possible that the fact I have been panicking about this 24/7 for the last 40 days or so make it more likely to happen? I read somewhere (I forgot where LOL) that anxiety can affect the memory and even when the anxiety calms down it may take the memory a while to recover. They didn't specifically mention losing train of thought, though. I wish they had.

I will try to be strong. I would like to be positive like you one day.

Oh, I just wanted to add that I often (not always, sometimes I draw a blank) remember in vivid detail exactly what I forget. Even the next day I go over various conversations in my head and exactly what I forgot to say. My sister said I'm neurotic. Well duh, but neurotic people get dementia too, probably even more so.

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Re: New here and scared

Postby NF52 » Mon Jan 21, 2019 3:38 pm

Natasha wrote:Thank you so much NF52. That is very comforting and kind of you but I feel that I have not been completely honest. I lose my train of thought more often than in the past, and lately it's constant like every time I open my mouth...Do you think the fact that it is getting worse means that I am close to nursing home time? ...Oh, I just wanted to add that I often (not always, sometimes I draw a blank) remember in vivid detail exactly what I forget. Even the next day I go over various conversations in my head and exactly what I forgot to say. My sister said I'm neurotic. Well duh, but neurotic people get dementia too, probably even more so.
Hi Natasha,

I'm not just being kind! What you are describing sounds exactly like what I would expect would happen with someone who is anxious, and sort of constantly ruminating about things other than what she's talking about.

Here's a thought experiment: If I suddenly asked you what your big toe was feeling like 5 minutes ago, you probably wouldn't be able to tell me, because you weren't paying attention to it. But if I suggested that your big toe had been exposed to poison ivy and might start feeling itchy, it's pretty likely that a) it would start feeling itchy and b) even if it didn't, you'd have a hard time concentrating on a conversation.

Your brain is spending almost all of its attention and memory capacity on worrying not about your big toe, but about ApoE 4 and so sometimes loses the thread of conversations. We're programmed to pay attention to our brain warning us "tiger ahead!" and immediately forgetting what we were cooking or saying so that we can fight or flee. That's helpful for tigers; less so for thinking about the risk of future nursing homes.

Since you can remember conversations in detail the next day, and what you meant to say, you have solid memory skills; you just have some intermittent attention blips. And no, you're not neurotic, but you are worrying about something that is not diagnosed in people who are 50!! Nobody ends up in a nursing home at 50 unless they have a rare familial gene for Early Onset Alzheimer's and you would know that because you would have generations of people who got it in their 40's. You have a better chance of winning the Mega Millions three times than going into a nursing home any time soon.

So, how about scheduling a massage, or a walk with a friend, and maybe call your provider and let that person know you're struggling a little. If you haven't done relaxation therapy and cognitive behavioral therapy, those might both be helpful. And celebrate that vivid memory--maybe you are an artist at heart!
Last edited by NF52 on Tue Jan 22, 2019 7:52 am, edited 1 time in total.
4/4 and still an optimist!

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Re: New here and scared

Postby Julie G » Tue Jan 22, 2019 7:07 am

Welcome, Natasha! You’ve already gotten lots of helpful advice and support.

I’m curious about your chronic Lyme/Babesiosis. As you know, both can contribute to cognitive decline. I’ve also had Babesiosis for decades and think (fingers crossed) I’m cured. I’m waiting for the most recent round of testing.

If you haven’t found it already, I highly recommend “The End of Alzheimer’s” by Dr. Dale Bredesen. Applying the strategies he discusses, along with working with a Lyme literate functional medicine practitioner has been really helpful for me.

Deep breath, my friend. You’ve got this. You’re young and perfectly poised to turn things around. There’s truly so much hope.

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Re: New here and scared

Postby Fiver » Tue Jan 22, 2019 8:12 am

Hi Natasha. I forgot to mention. As you probably know, 5mg of Lexapro is a low dose. For example, the general recommendations for doctors is to start at 10mg and move towards 20mg to treat depression, general anxiety and OCD - just a rule of thumb, but you get the idea. It's a low dose. Your dose may be just right for you. I'm not a medical doctor. But knowing that might help to reduce your worry about it potentially contributing to later AD.

I am not a medical doctor. (oops said that twice! probably a good thing) But I did research this pretty thoroughly and didn't find any clear link between SSRI use and dementia, except a few studies showing it slightly lowered long-term risk. Un-managed anxiety, depression, and stress in general, on the other hand, seems to be considered to be a risk factor. Ironic, I know. The thing that is stressful can be made worse by stress :roll:

I don't know about klonopin.

Best wishes.
A little tired of reading studies. A little worried about the lack of research progress. Ever notice Forrest Gump's Alabama jersey number?

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Re: New here and scared

Postby Natasha » Tue Jan 22, 2019 2:42 pm

NF52: Thank you for everything. It's so helpful and reassuring. Yesterday I had a pretty good brain day and a long phone conversation that went well. Maybe I should buy a lottery ticket.

Fiver: Thank you for looking things up : ) I can only tolerate 5 mg of Lexapro which seems common among Lyme patients. I've often thought of the risk of untreated anxiety/depression vs the risk of the drugs. Would be interesting, though not humane, to study people with untreated vs treated anxiety for like 20 years.

Thanks everyone : )
Last edited by Natasha on Sun Feb 10, 2019 7:29 am, edited 2 times in total.

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Re: New here and scared

Postby slacker » Tue Jan 22, 2019 3:21 pm

Welcome Natasha;

You are tough! Hang in there. We are here to support each other.

PS. The ApoE4 allele is a risk factor for Late onset AD. Age 50 would be considered early onset. And you have one allele, not 2! Life is good ;)
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Re: New here and scared

Postby GLS18 » Tue Jan 22, 2019 6:50 pm

Natasha wrote:Hello I found out a while ago that I have one copy of APOE 4. Unfortunately I also have chronic Lyme/Babesia. Additionally I have an anxiety disorder and take 5 mg of Lexapro which I just found out increases Alzheimer's risk. On top of that I take Klonopin but have been trying to wean off of it at what happens to be the most anxious time of my life. I'm down to .375 mg of Klonopin/day and have no quality of life due to a constant state of panic that I might end up drooling in a nursing home by the time I'm 50. My fear started because sometimes when I talk about something I will forget the point I was making and have to pause to think about it. I read on the Mayo clinic site that this may mean I'm destined for Alzheimer's :shock: I'm now afraid to talk to anyone because I will panic if I lose my train of thought. Please tell me I'm crazy. I would rather be crazy than demented.

Sorry I'm being so negative but I am just so scared.



Hi Natasha & A Very Warm Welcome To Our Community!

I'm sending a big hug your way:) You have taken a fantastic and courageous first step by reaching out to our community for support. There are many wonderful suggestions and guidance via this thread. It is okay and normal to feel scared and anxious when trying to process this information. When we are under tremendous emotional and/or physical stress, it can negatively impact our brain health and cause some of the cognitive symptoms that you are describing. I'm curious to know what activities help you to relax? What one step can you take this week to transform your anxiety?

This supportive community offers m​​any opportunities to learn and share insights when you are ready. The Primer is a fantastic ​resource exploring areas such as the ​science behind the ApoE4 gene and the lifestyle factors that impact its expression. It is beautifully compiled by Stavia, a physician, member and E4/E4. How To Get The Most Out Of The ApoE4.Info Website is a brilliant guide for navigating the site effectively and finding information most relevant to you.

You can do this Natasha, and we will be cheering you on every step of the way!

Again, a warm welcome:)
Gina
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Reversing Cognitive Decline For Coaches Certification Candidate, Fall 2018
"Live as if you were to die tomorrow. Learn as if you were to live forever." - Mahatma Gandhi


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