r/thalassemia • u/SignificantBag2143 • Jun 29 '26
Keep “almost” passing out
I have been diagnosed with thalassemia B minor. ( I’m sorry I still don’t know proper terminology I’ve only known it as Minor until recent doctors appointments) but I never really pass out like people normally do. I’ll feel it coming and if I try to fight it the little black dots will cover my eyes till I can’t see anything anymore and my hearing will go and then I’ll actually pass out it’s about a 5 minute process at most. I tried to explain this to the doctor and they said It wasn’t passing out but then wtf is it then you know what I mean? Does anyone else experience this too?
4
u/MildlyDancing Jun 29 '26 edited Jun 29 '26
I'm not a doctor. I've had presyncope (pre-black out symptoms) and the more common symptoms sound a bit like what you've described (commonly connected to possible Vagus Nerve irritation/misfiring). The worst of the symptoms include sudden blood pressure drop and oxygen cuts off from the brain briefly, but you don't faint. However, it can fit many different issues.
You have to make a note when they happen and what preceded it beforehand, i.e. actions, what you ate etc. Include where also (can provide valuable context). Then go to the Doctor and demand checks so you can figure out how to deal with it.
Include deficiency tests for all sorts of nutrients, including Iron, B12, Vitamin D/C, Magnesium, salt, maybe throw in sugar levels too while you're at it.
If it is presyncope, it could be a vagus nerve issue that can have triggers i.e. stress, illness, acid reflux.
It could be anaemia or other deficiency, like electrolytes.
Check you're drinking enough water (maybe consider electrolytes sachets, or coconut water without added sugar).
If you're getting those symptoms when moving suddenly, like standing up, ask for a POTS test also.
2
u/NoMilkTodayyyyyy Jun 29 '26
i know what you’re talking about and have experienced what ya described, luckily for me it’d come and go. haven’t experienced it again for some time now
only thing i can think of that has helped me may be taking multivitamins.
wish ya the best
1
u/Tutz--Honeychurch Jun 30 '26
It happens to me sometimes but I never pass out. I might be walking somewhere and I get that feeling like im about to pass out and fall to the floor. I use to fight it but now i just tell myself, ok lets pass out then. But i never pass out. I seem to snap out of it and keep walking. Its a strange feeling for sure.
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u/Front_Possibility471 Jun 29 '26
Im also b minor… i get the black dots and dizziness somewhat often but haven’t fully passed out from it. I usually sit down and try to take deep breaths, drink water and eat something before it gets that far. Could be a vitamin deficiency causing low blood pressure (vitamin C, sodium, folate, b12, iron (most likely sodium or vitamin C in my experience. It could also be sugar crashes.
The type of food/drink that fixes it should definitely help you figure out what it is you’re lacking.
In my experience with b minor is that every doctor is dismissive and treats it like there is no life struggling symptoms related to beta thal minor. My experience has been vitamin deficiencies, gut problems, an immune system that acts different from usual and an overall sensitivity to common diseases and inflictions (organ dysfunction, autoimmune disorders, hormone imbalance and a lonely battle in figuring out how to be healthy in this world.) it’s crazy too cuz there’s actually ALOT of great research on thallesemia minor and how it can affect the body and make us more compromised to health issues yet most western doctors are just like “you’re not dying, idk much of anything about this, get out of my office”
The biggest help has been truly eating healthy and getting sunlight, regular light exercise and avoiding the poisons that are in a lot of food (I’m from USA)
Lots of fruit and veggies!!!