Very bad sleep issues

[Chrisweides]

Hi everyone,

Hopefully this is the right section to ask general questions and advice.

I am so terribly scared. Since my mother started with AD symptoms, I have had anxiety attack after anxiety attack due to having the E4 gene. Sometimes I wish I had never taken the test, on the other hand, seeing as all the women in my family before me had dementia, I knew something was wrong anyway.

That was three months ago. Since then I have seriously not slept properly a single night. I dont know what to do anymore, I get panic attacks and waves of anxiety and lying there thinking that this is majorly increasing my AD risk makes if worse. But I cant keep this thought out of my head and I cant sleep!

And now that I had so many nights of bad sleep, I indeed start forgetting things, making serious mistakes etc. which makes it worse.

I have tried medication, that made it much worse (an SSRI). I then got two other meds to relieve the symptoms from the ssri, mirtazapine and some neueoleptic. I discontinued both since mirtazapine affects the histamine receptors eve worse than antihistamines and I was so fearful this will increase my risk even further. The neuroleptic I was skeptical of anyway since they all can increase general dementia risk.

I have taken passion flower for many years since everyone including several doctors told me its harmless and I can take it forever, but then I read that passion flower has the same mechanism as benzodiazepines and that scared me badly because I know long term benzo use will majorly increase AD risk. I am already terrified I have inadvertently done irreparable harm there. So I cant do that anymore.

I have tried meditation, progressive muscle relaxation and othrr techniques like that. When I am not too anxious, they work, but when I am in a bad way like now I just cannot relax and the panicky thoughts will increase so badly that I feel that makes it worse,

I feel so doomed. Has anyone else experienced something like this? Do you have any advice what to do? The doctors are throwing a lot of medication at me and they dont take the AD risk seriously. When I tell them I dont want to take for example tricyclic antidepressants because they have been shown to increase AD risk they just wave me off. Its like they dont think about this disease until its there which is, in my mind, ridiculous.

Can anyone suggest anything? I am at my wits end, truly. Only 2-3 hours of sleep for months has really hurt me. And I cant seem to get out of this.

It may also be a perimenooausak or menopausal thing since at 50 and after a hysterectomy it is “the time” for that. That may mean years of this…cant even bear the thought.

Thank you for any ideas. If this is not the right place to post this, please just move or remove the post.

Chris

[mike]

I am so terribly scared. Since my mother started with AD symptoms, I have had anxiety attack after anxiety attack due to having the E4 gene. Sometimes I wish I had never taken the test, on the other hand, seeing as all the women in my family before me had dementia, I knew something was wrong anyway.

To me, the best defense against anxiety is knowledge. My dad just died of AD a few years ago. It's scary as hell. But by learning more about AD and where the research is now, I have little doubt I will face the same outcome. There is a lot you can do in the meantime to increase your odds even if they don't come up with a "Magic Pill" - probably the biggest is to not be in the bottom quartile exercise wise. Keep your brain active.

I went back and read your other post, and I'm changing this a bit. You are a 3/4, and your odds, even without you doing anything, is much better than if you were a 4/4. This is also a long journey, and you don't need to change everything at once. Read here and learn.

[Chrisweides]

Thank you Mike. I really appreciate your encouraging words. I think a perimenopausal issue may be at the base of this new and severe sleep and anxiety issue too. As far as I understand the advice here, I should seek hormone replacement therapy. Since my mother and grandmother also experienced anxiety and sleep disruption at my age, there could be a connection there. Neither got hormone replacement therapy.

[JD2020]

Chris,

I am so sorry you have having such anxiety and sleep issues. I don't have any suggestions for the anxiety, but maybe some thoughts about sleep that would be helpful. Of course, your anxiety impacts your sleep, but a functional medicine doc might be able to help you identify other issues that you would never find on your own.

For example, I was on Ambien long ago...for 7 years. Then the reason for a skin disease was finally uncovered - mercury. After one month of chelating, I realized that I didn't need the Ambien any more. My sleep certainly wasn't great, but it was much improved.

I started with my ReCode doc at the end of 2019. She said that I have to sleep well. I said, well, my body doesn't do that. I did not believe that there was anything to be done, but I was wrong. This is what I do now:

1. Bioidentical hormones. If I'd known I was ultimately going to be on these, I would have taken them during the transition instead of just laughing at 40 hot flashes a day. Progestrone is lovely in the evening.

2. Magnesium threonate at bed

3. Melatonin at bed

4. Then I purchased Ooler last Nov and could not believe how awesome it was to sleep at 64 degrees. But now the room is warmer, and it turns out that thing doesn't work as well when you really need it! I have been very grumpy the last few days and am experimenting with turning a fan on it with ice packs in between so that it has cooler air going into it. Ridiculous. The warmer temperature impacts my sleep, and last night was not great, but still - I got 7 hours.

That's my sleep story. You have yours. A doc can help you find out if you have a toxicity that is interfering with sleep (and maybe contributing to anxiety), check hormone status, and work with you on the right supplements. If not for my skin disease, I would not have known that I was mercury toxic. My ReCode doc would have ultimately figured it out, but I found her 15 years later, and that would have been 15 more years on Ambien.

Good luck.

[Chrisweides]

Thank you JD2020! I will look into the removal of heavy metals, though the chelation scares me a bit. I am going for the natural way via selenium and zinc, seeing I have hashimotos and need that anyway. Is there any advantage of magnesium theonate over magnesium glycinate which I was recommendet by someone else and which is easier to get here?

I really need to look into the hormones. Where I live, the gynacologists have been scared into hardly ever prescribing any because of the cancer danger. Reading through the materials here and others, that seems to have a lot to do with the dosage and which hormones you use, though, so some estrogen should not be harmful.

Thanks again! I really appreciate the advice.

[JD2020]

I don't know if there is a difference in the type of magnesium. My doc said to use threonate, so I did.

Here is the thing about the docs: the traditional docs and the integrative docs are not the same. We don't have time for mainstream medicine to catch up. Your anxiety about this issue might subside once you meet with someone who is educated to these specific issues, helps you identify your vulnerabilities, and sets you on a path to optimize. I was reluctant to get on hormones. My doc had me read a book about the WHI study, discussing all the bias in the study and misinterpretations. The book is "Estrogen Matters". I said ok to hormones, and then decided that I am going to trust her. So I am on bio-identical hormones, and she does annual tests that regular docs don't even do, and she adjusts accordingly.

Contrast that with a friend of mine who goes mainstream only. She had a hysterectomy and is in her early 50s. She feels horrible. She asked her doc to run some hormone tests to see if she is way out of balance. Doc said no, it's just menopause. (Really? And she feels horrible, and we are just going to let her suffer?) She is now on Premarin. There was no discussion of options, at all.

The point about heavy metals wasn't that that might be what is keeping you up. The point is that that was what was keeping me awake. But I meant that anecdote as an example of what any toxicity could do, and sometimes you have to hunt to find your toxicities.

Please consider investing in yourself. Get a ReCode doc. Depending upon their licensing requirements, you might have to meet in person the first time. After that, you can go virtual. Mine is right up the street, but she still isn't seeing people, and my appointment next month will be on Zoom. Then you will have a traditional doc and an integrative doc on your team. The former is for urgent or mainstream matters (broken ribs, sinus infection). The latter is for wellness.

[Chrisweides]

Thank you again! I dont live in the US, so I dont know what a ReCode Doc may be . But the rest is familiar. I am suffering a lot since weeks of not sleeping really take a toll. I‘m looking into alternatative medicine, too.

I know that such bad sleep increases my AD risk and it makes me even more anxious. My mum who is now starting to develop dementia had the same issues at my age. She says sleep gets better but its not calming me since I see it obviously did harm. She had it less bad than me, too…

Are there any safe anti anxiety meds or sleep meds for people at risk for AD? Oh and I cant take SSRI nor SNRI since those have the opposite effect on me.

[NF52]

...
I really need to look into the hormones. Where I live, the gynacologists have been scared into hardly ever prescribing any because of the cancer danger. Reading through the materials here and others, that seems to have a lot to do with the dosage and which hormones you use, though, so some estrogen should not be harmful...

Hi Chris,

Your awareness of what works and what doesn't is a great strength! You described yourself in an earlier post as "beyond terrified", so let me try to give you an off-ramp for those feelings from my own history as someone who also had panic attacks, sleep-deprived nights and a mother with beginning AD symptoms when I was 50. I wish someone would have told me when I turned 50 and worried about my mother's cognitive issues that at 70 now, I would weigh less, exercise more, sleep better, have multiple interesting volunteer projects involved with Alzheimer's prevention, enjoy wonderful adult kids and grandkids and a husband who continues after 42 years to have the patience of a saint! And I have 2 copies of ApoE4, not the one you have.

What you are experiencing with sleep, reduce concentration, etc. is normal and WILL GET BETTER! It's your hyper-alert amygdala that is the problem--not your brain or your genes.

Here's some very encouraging news from Dr. Lisa Mosconi, Director of the Women's Brain Initiative at Weill Cornell Medicine in New York City, and author of The XX Brain, reporting on MRIs of women in perimenopause and post-menopause:

Even though many women experience troublesome symptoms, from hot flashes to forgetfulness, menopause is a normal physiological event. Our study suggests that the brain has the ability to find a new “normal” after menopause, at least in most women,” said Dr. Mosconi. “We hope our findings will help overcome the stigma around menopause and encourage all women to take care of their brains during this transition.

Imaging Study Reveals Brain Changes During the Transition to Menopause.

Your personal risk of a diagnosis of EITHER Mild Cognitive Impairment or Alzheimer's dementia is impossible for anyone to determine, but here's the take-away from a population-based analysis of large groups in the US and Rotterdam who were followed for years. It was given to prospective ApoE 3/4 and ApoE 4/4 participants in the Generation Study in 2016-2019. I was one of those participants, and went from seeing myself as doomed to get Alzheimer's by age 68 (still cited in some articles as a fact) to realizing that I could look forward to years of brain health.

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). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty.

[Note: "Lifetime" was defined as up to age 85, since that is the average lifespan for people who are now about 60-75.]
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

More importantly, we know that menopause--and maybe especially surgical menopause which you have had--has a huge effect on the brain. Your doctors may be relying on research from years ago, especially a 2002 report of the Women's Health Initiative that included women ages 50-80-- was later shown to be show significant risk ONLY in women over the age of 70.

Here's some scientific articles you may want to share with them, with excerpts from each and the source linked right below the quote:

The study found that when women under 60 received hormone replacement therapy (HRT) after surgery, their risk of dying during the 18-year follow-up period decreased by almost one-third compared to women taking a placebo.

HRT Could Benefit Younger Women After Hysterectomy

Estrogen replacement therapy suffices for women with a prior hysterectomy. There is a clear distinction in risk and side effect profile between cHRT [combined estrogen and a progestogen] and estrogen replacement therapy. Apart from being the most effective treatment for menopausal symptoms, estrogen prevents osteoporosis, and may also have a potential role in prevention of Alzheimer’s Dementia, now the biggest killer of women in the United Kingdom.

Progestogens are the problem in hormone replacement therapy: Time to reappraise their use

Bioenergetic crisis and chronic low-grade inflammation are hallmarks of brain aging and menopause and have been implicated as a unifying factor causally connecting genetic risk factors for Alzheimer’s disease and other neurodegenerative diseases... alterations in fuel utilization [i.e glucose vs ketones] and neuroinflammatory mechanisms during these neuro-endocrine transition states can inform therapeutic strategies to mitigate the risk of Alzheimer’s disease in women. We further discuss a precision hormone replacement therapy approach to target symptom profiles during endocrine and chronological aging to reduce risk for age-related neurodegenerative diseases.

Transitions in metabolic and immune systems from pre-menopause to post-menopause: implications for age-associated neurodegenerative diseases [version 1; peer review: 2 approved]

Studies suggest lower levels of estrogen resulting from oophorectomy and hysterectomy affect brain volume negatively, and the addition of HT modifies the relation between BMI and brain volume positively. Effects of HT may depend on the age range assessed, motivating studies with a wider age range as well as a randomized design.

Estrogen, brain structure, and cognition in postmenopausal women

Significant changes in levels of estrogens across the lifespan can affect hippocampal neuroplasticity (reviewed in Sheppard, Choleris, & Galea, 2019), cognition (reviewed in Albert & Newhouse, 2019), and brain volume (reviewed in Russell, Jones, & Newhouse, 2019), depending on the amount of lifetime estrogen exposure, aging, and the type and duration of hormone therapy (HT). ...There is evidence that females receiving HT in middle age have larger hippocampal volume than females who did not report HT use (Eberling et al., 2003; Pintzka & Håberg, 2015). Studies in postmenopausal females given 17β-estradiol-based HT in both the short and longer term showed larger hippocampal volume compared to those who did not take HT (Hu et al., 2006). These effects are seen in a dose-dependent manner, as chronic (3 months) 17β-estradiol treatment with a 2 mg dose, but not 1 mg dose, showed increased gray matter volume in the posterior hippocampus (Albert et al., 2017). Conversely, the Women’s Health Initiative Memory Study found that the use of estrone-based HT in females between the ages of 71 and 89 leads to a decrease in hippocampal volume (Resnick et al., 2009).

Chapter 2 - Sex and sex hormone differences in hippocampal neurogenesis and their relevance to Alzheimer’s disease

You haven't found relief with the "typical" anxiety medications and have reasonable concerns about them. I wonder if your doctor would be willing to try bupropion, which is sometimes used in the US for anxiety, smoking cessation, and generalized anxiety disorders. Although a small percentage of people actually developed anxiety from bupropion, it may calm your overall anxiety level down and let you sleep.

Be well, Chris.

[Chrisweides]

Thank you so so much Chris! This really helps. It is such a relief to hear you are still going strong and likely to remain so. It seems I am indeed the same as you 20 years ago situationwise. And that what I am experiencing is common and normal. Maybe I should have gotten esteogen even earlier but better late than never and probably it will be in time now the symptoms are so bad. I‘ll continue to bother my gynaecologist until she sees reason.

20-25% is plenty scary but I will choose to focus on 75% AGAINST. My foremothers and my mum didnt have the knowledge I have now due to this excellent site and others. And my grandmother only developed it after 85. Hopefully I will escape this disease entirely with exercise, nutrition and an active brain life and social life. Shame my mum is very stubborn and refuses to listen to me to start medication now that she is repeating stuff, unsure in new situations etc which I know well to be the start of decline.

As to medication, I think I will return to passion flower for a while to get over the worst of this, I am thinking the bad effects of this severe anxiety and insomnia probably outhweigh and possible issues due to passifloras GABA regulation. And I have found studies that the flavonoids in passion flower are neuroprotective, so that may offset its benzo-like mechanism to some degree. I have taken it during the last 12 years and cant take that back anyway (I wish I had taken breaks in between, my docs always convinced me its harmless). Its really a shame docotrs (at least mine) dont take my AD risk concerns seriously. But they may have been right that this supplement is better than stronger medication.

Melatonin is something else I am taking now to help me get a few hours of sleep at least (doesnt work too long) since I read here that it is likely harmless and possibly even beneficial.

And now I will hopefully get some estrogen soon, too. I dont want to suffer like this for years until my body has adjusted.

I wish you all the best! Thank you again

[floramaria]

1. Bioidentical hormones. If I'd known I was ultimately going to be on these, I would have taken them during the transition instead of just laughing at 40 hot flashes a day. Progestrone is lovely in the evening.

yeah! Me too!