APOE 4/4 - Dizziness that won't go away

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cdaniel
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APOE 4/4 - Dizziness that won't go away

Post by cdaniel »

I suddenly started experiencing dizziness about six months ago. My doctors have ruled everything out from a blood clot in my brain (two CTs scans with and without contrast) to eye problems to inner ear issues. The current tentative diagnosis is meniere's disease, but I don't have the symptoms I read about online expect for persistent dizziness and headaches. My blood work is normal, my hearing is normal, my BMI is normal, and I'm not quite 40 yet. I'm worried there is an issue being cause by my APOE 4/4 status and its impact on the vascular system, but when I've tried to discuss with the doctors, they don't seem interested or to understand if there could be a correlation. I could be wrong of course that it has something to do with it, but I really would like to understand what's happening to me and how it could be managed, it's disrupting my day to day life. Have any other APOE's had a similar experience with dizziness or any theories I could research? Thanks!
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Re: APOE 4/4 - Dizziness that won't go away

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cdaniel wrote:Have any other APOE's had a similar experience with dizziness or any theories I could research?
I was diagnosed with Meniere's many years ago after a similar round at the doctors. And I could never really link my vertigo to anything. It just came and went, but when it came, it would be wicked and some days I couldn't even go to work. Most times doing the Epley Maneuver helped.

It wasn't until I had an OAT that showed my urinary oxalates were 3 times the upper range, that I found the source of a lot of issues, including vertigo. I have slowly lowered my dietary oxalate content and have only had 2 fairly minor episodes in the past 3 years.

You might check out the Oxalate wiki that I created to help people navigate this issue. Reducing oxalates ended up being a very important part of improving my health overall. And if you do decide to decrease oxalates, as the wiki says, go real slow (like "eat half of the spinach you normally eat in a week, then cut in 1/2 again the next week" kind of slow and cut only one high oxalate food at a time) to avoiding making your symptoms worse. The wiki explains this in more detail.

Good luck in finding the cause of your dizziness!
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Re: APOE 4/4 - Dizziness that won't go away

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cdaniel wrote: Mon Nov 13, 2023 12:02 pm I suddenly started experiencing dizziness about six months ago. My doctors have ruled everything out from a blood clot in my brain (two CTs scans with and without contrast) to eye problems to inner ear issues. The current tentative diagnosis is meniere's disease,
It never hurts to check in with the integrative docs, especially when mainstream medicine is unsure of the diagnosis. My reference point is Lyme disease, so I will share that story as an example. I had an integrative doc. My son had a pediatrician. In 7th grade, he got bit by a tick. They were camping, and when he called, I told him to keep the tick, but he lost it. I took him into the pediatrician. She told me that there was no Lyme disease around here, and he didn't need to be treated.

About a year later, his eyes looked different to me. Major mother's intuition. I had forgotten about the tick. I couldn't take him to the pediatrician and say, "something seems wrong". She would have thought I was nuts. I took him to my doc, and he started investigating, and he found the Lyme and several other related diseases from that tick.

Recently, in this area, a man about 10 years older than my son killed himself. He had all the diseases my son has had, but he was tested with the CDC approved test, which is notoriously worthless, and by the time he had a diagnosis, years after he began being ill, his body was wrecked.

In the meantime, I've learned of so many diseases that are diagnosed by mainstream medicine when it misses Lyme: chronic fatigue syndrome, fibromyalgia, ALS, AD, depression, insomnia, RA and MS, as examples.

So.....do you have Meniere's? It sounds like the diagnosis doesn't fit. Do you have a toxicity? A pest living inside you? Something else? If mainstream medicine can't figure it out with certainty, perhaps you should explore a different approach by working with an integrative doc.
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Re: APOE 4/4 - Dizziness that won't go away

Post by Sara »

You don't mention if you are on any medications or not. I would guess not since you are young. I am asking this since I just spent part of my afternoon looking up medications that a client has been on and almost every one stated dizziness as a side effect.
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Re: APOE 4/4 - Dizziness that won't go away

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Sara wrote: Tue Nov 14, 2023 5:46 pm You don't mention if you are on any medications or not. I would guess not since you are young. I am asking this since I just spent part of my afternoon looking up medications that a client has been on and almost every one stated dizziness as a side effect.
Hi, Sara. I don't take any medications, but I do take a few supplements. (Fish oil, vitamin D, B12, choline and curcumin) But when this started I stopped taking them for a month and it didn't change. Maybe I didn't stop long enough to see if it was a side effect, but it didn't seem to impact it.
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Re: APOE 4/4 - Dizziness that won't go away

Post by cdaniel »

JD2020 wrote: Tue Nov 14, 2023 9:17 am
cdaniel wrote: Mon Nov 13, 2023 12:02 pm I suddenly started experiencing dizziness about six months ago. My doctors have ruled everything out from a blood clot in my brain (two CTs scans with and without contrast) to eye problems to inner ear issues. The current tentative diagnosis is meniere's disease,
It never hurts to check in with the integrative docs, especially when mainstream medicine is unsure of the diagnosis. My reference point is Lyme disease, so I will share that story as an example. I had an integrative doc. My son had a pediatrician. In 7th grade, he got bit by a tick. They were camping, and when he called, I told him to keep the tick, but he lost it. I took him into the pediatrician. She told me that there was no Lyme disease around here, and he didn't need to be treated.
Thanks for this. I've been considering an integrative doctor or a specialist in APOE4, but I live in Kentucky and it's been hard to find a doctor that's familiar with APOE4.
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Re: APOE 4/4 - Dizziness that won't go away

Post by cdaniel »

SusanJ wrote: Mon Nov 13, 2023 4:37 pm
cdaniel wrote:Have any other APOE's had a similar experience with dizziness or any theories I could research?
You might check out the Oxalate wiki that I created to help people navigate this issue. Reducing oxalates ended up being a very important part of improving my health overall. And if you do decide to decrease oxalates, as the wiki says, go real slow (like "eat half of the spinach you normally eat in a week, then cut in 1/2 again the next week" kind of slow and cut only one high oxalate food at a time) to avoiding making your symptoms worse. The wiki explains this in more detail.

Good luck in finding the cause of your dizziness!
Just read through this and I'm going to try eliminating foods highest in oxalates and see if there is an impact. I'm worried that my vascular system is struggling somehow and not enough blood is getting to my brain, but it would be excellent if it could be solved with diet. I have low blood pressure, so I considered that but it's not episodic to standing and sitting, just kind of a constant feeling of rocking on a boat.
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Re: APOE 4/4 - Dizziness that won't go away

Post by Veero »

I remember along the way hearing that biotin deficiency can make oxalate reaction worse (biotin being involved in oxalate metabolism).....?
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Re: APOE 4/4 - Dizziness that won't go away

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cdaniel wrote: Mon Nov 13, 2023 12:02 pm I suddenly started experiencing dizziness about six months ago. My doctors have ruled everything out from a blood clot in my brain (two CTs scans with and without contrast) to eye problems to inner ear issues. The current tentative diagnosis is meniere's disease, but I don't have the symptoms I read about online expect for persistent dizziness and headaches. My blood work is normal, my hearing is normal, my BMI is normal, and I'm not quite 40 yet. I'm worried there is an issue being cause by my APOE 4/4 status and its impact on the vascular system, but when I've tried to discuss with the doctors, they don't seem interested or to understand if there could be a correlation. I could be wrong of course that it has something to do with it, but I really would like to understand what's happening to me and how it could be managed, it's disrupting my day to day life. Have any other APOE's had a similar experience with dizziness or any theories I could research? Thanks!
Hi,
I had vertigo and tinnitus develop simultaneously when I was about 55. I had an MRI to rule out an acoustic neuroma, and the conclusion wasn't Meniere's but a probable virus which temporarily affected by vestibular system. I took Meclizine which helped a lot with the vertigo (and made walking down a school hallway with checked tiles possible!) and the vertigo gradually lessened over about 4-5 months. The tinnitus, unfortunately, has stayed with me, and is probably caused more by a mild high frequency hearing loss.

Any chance your doctors would refer you for an MRI to rule out causes that might not show up on a CT scan? I'm not a neurologist, so can't really speak to what those would be, but edema that some people experience in anti-amyloid clinical trials has been shown to cause dizziness and appears as an "imaging abnormality" on MRIs, hence the name ARIA-E for Amyloid-Related Imaging Abnormality.

I'm assuming your doctors also asked about your eating habits and when the dizziness happens--for example, when suddenly standing up, or when turning around suddenly. My then-college age daughter had some dizziness and fainting spells and the mystery was solved when her terrific pediatrician asked about breakfast--which was usually coffee and a donut. She also wasn't getting enough protein. Twenty years later she's much more aware of how to be healthy and runs marathons!

Here's hoping you find some relief soon--if not, talk to PTs, who can try maneuvers to re-train your vestibular system.

Nancy
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Re: APOE 4/4 - Dizziness that won't go away

Post by cdaniel »

NF52 wrote: Wed Nov 15, 2023 5:22 pm
Any chance your doctors would refer you for an MRI to rule out causes that might not show up on a CT scan? I'm not a neurologist, so can't really speak to what those would be, but edema that some people experience in anti-amyloid clinical trials has been shown to cause dizziness and appears as an "imaging abnormality" on MRIs, hence the name ARIA-E for Amyloid-Related Imaging Abnormality.
Hi, Nancy! Thank you for your response. An MRI is the only thing that hasn't been done yet. I'm not sure how to elevate the issue to them to where they agree to go down that path after a clear CT. I have another appointment coming up, so I'll see what they think. It does concern me that damage is happening/happened since it has been so long without a resolution.
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