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A MyAmyloidosisTeam Member asked a question 💭
Milton Keynes, UK
July 6, 2025
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Answer Summary

Members confirmed that amyloidosis can indeed cause blackouts, primarily through a complication called postural hypotension, which causes... Read more

Members confirmed that amyloidosis can indeed cause blackouts, primarily through a complication called postural hypotension, which causes sudden drops in blood pressure and has led some members to actually faint multiple times, with one sharing they fainted four times in ten years and now recognize the warning signs of dizziness before it happens. Several members described related cardiovascular challenges, including needing pacemakers to manage the condition, with one recounting a frightening episode that required EMTs to help them out of the shower. A recurring theme was the unpredictable and wide-ranging nature of amyloidosis symptoms, from vision issues to heart complications, met with mutual encouragement to celebrate small wins, take things one day at a time, and support overall health through nutrition and vigilance.

A MyAmyloidosisTeam Member

Ah yeah, visited with endoscopy doc today….no signs of Amy!! Bilateral carpal tunnel, no signs of Amy….now, I’m really worried about ALS! Anyone else weigh in?

July 9, 2025
A MyAmyloidosisTeam Member

Seems like amyloidosis can cause about any kind of symptom🤷🏼‍♂️

July 6, 2025
A MyAmyloidosisTeam Member

One worry at a time Steve! Bask in the wins you just got ❤️

July 11, 2025
A MyAmyloidosisTeam Member

Well I can only speak for myself but totally agree with Milan, because there are things happening to my body and mind that seem the old me has taken leave of the Richard I knew for 77 years and a stranger is pilfering me of what "good" stuff I still might have left.

July 6, 2025
A MyAmyloidosisTeam Member

Does anyone else suffer with eye issues?
I occasionally suffer with eye problems in that my peripheral vision can become 'crowded'. By that I mean I cannot fully see what is ahead of me because my view becomes 'limited' and dark. Strong light makes it feel much worse. To deal with these thankfully infrequent episodes I retreat to a quiet place and close my eyes.
The episodes typically last no more than about fifteen minutes
I have had a couple of eye check ups (orbital imaging tests) and on both occasions no amyloid deposits were found behind my eyes.
I have another one of these check ups tomorrow along with a standard eye test.
To help support my eyes I take a daily vitamin A supplement and eat pistachio nuts which contain antioxidants called lutein and zeaxanthin which are beneficial for one's eye health apparently.

July 6, 2025

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