Chronic fainting, sleep fainting, vasovagal syncope?

Cool. It’s only available in print but Amazon has it used. Libraries don’t have it. Gonna try to grab a used copy. Thanks for this!

I was on topamax for migraines until I found root cause was menopause. Have been gluten free for last 8 years. Gluten is good for no one or anything, it doesn’t seem to make any difference with whatever trigger is causing my fainting.

Your symptoms are very similar to mine, although the cause might be completely different.

In my case, it was related to Coxsackie B3 and B4. If you still haven’t found the cause of your fainting episodes, let me know here and I can share more info.

Unexplained fainting—both late at night while sleeping (waking up just before fainting) and during the day—along with sleep problems, diarrhea, skipped heartbeats, and more were among my symptoms.

Again, it may have nothing to do with your case.

Your symptoms sound exactly like mine. Thanks you SO much. I have determined my headaches are caused by dehydration and the fainting. Not migraines as such. So I drink tons of water with added electrolytes plus salt and they go away. I have ordered the testing for the Coxsackie viruses. My Dr. has also referred me to the Autonomic Dysfunction Clinic at Duke and Vanderbilt. Duke can't take any new patients unit 2027!? I am waiting to be contacted by Vanderbilt.

I had the experience of fainting often. Two doctors- finally at Mayo they gave me a pacemaker. I haven’t had fainting since-5 years ago.

For testing, a neutralizing antibody test may be the most appropriate—ideally done during a flare-up of your symptoms.

There’s also an indirect way to explore the viral angle: try supplementing with astragalus extract or even just astragalus root powder. The plain powder is less potent than the extract, so you’d need a higher dose.

Personally, since I started using astragalus, I haven’t had any more fainting episodes. I can’t say the same for my sleep issues—my 'non–24-hour sleep–wake disorder' hasn’t gone away. (N24SWD usually affects blind people, though I’m not blind.) Astragalus may take a few days or even a couple of weeks to start working.

In my case, it was probably a localized area within the brainstem that was—and probably still is—affected, most likely by an immune response to the virus (likely a non-cytolytic persistence/infection).

Again, this may be completely unrelated to your situation, but it might be worth exploring.

I think a complete neurology work up including brain scan would be in order . Fainting of any kind is very dangerous and anxiety provoking issue to deal with I had what was called syncope and collapse at the top of a staircase , broke my neck had spinal fusion from 0 to C4 that means surgeons had to screw into my skull
My problem was a heart issue

My labs came back with positive for Coxsacke B1 and B5! Negative for all others. Maybe this is my cause? Funny how no Dr. could figure it out but connecting with another patient did. Thank you so much. I’m sure the virus hasn’t caused cardiac problems since I’ve had the whole battery of cardiac tests multiple times but has caused neurally mediated syncope. Can you share again details of what helped you ? I realize yours was B3 and B4 but maybe treatment same?

It's likely, even if it's only IgG that's elevated (in case this wasn’t a neutralizing antibody test).
One of my doctors told me that even if the virus is gone, the immune system could still be driving symptoms.

Supplements that may help if the virus is the cause:

Astragalus membranaceus is the most important one. 1 to 2 teaspoons of root powder per day. Astragalus extract capsules might be more convenient, but many brands are underdosed. Look for something like the NOW 500mg Astragalus Extract standardized to 70%. Avoid very cheap brands.

NAC gave me a minor benefit.

Green tea or EGCG extract might also help a bit—just don’t take it on an empty stomach.

Lastly, I avoid sugar as much as possible and try not to overdo it with coffee.

I don’t want to give false hope. This may not work for you—but it’s worth trying for a few weeks.

I dealt with symptoms for a decade—every 2 months I'd relapse hard for a week. It’s been over two years now with zero fainting or syncope. Every time I tried stopping astragalus, my symptoms and blood tests worsened.

I really hope this works for you—but keep expectations realistic— even though it helped me, it might not work for you.

Feel free to ask if you have more questions.

I was reading details of the virus and ChatGPT told me a lot about it. I found a quality astragalus tincture to try. The AI says to be cautious with it since I have an autoimmune disease (Hashimoto's). I will start with small dose and the run thyroid test in 4-6 weeks to be sure the autoimmune hasn't been triggered by the immune boosting astragalus. I will continue on my journey of fighting this thing. If I can get it down to 2 events a year I could live with it I think. I thank you again for your information and offering help to me.