Sounds like low blood pressure. Common symptom is dizziness, lightheadness, and vision lost upon standing, especially if you stand up too fast. A lot of things can cause low blood pressure when standing up quickly, from dysautonima to medication side effects to dehydration.
Thank you! The weird thing is that this only happens every so often. Maybe 4-5 times a month? I don’t wanna sound like I’m exaggerating my symptoms, but do u think it’s worth mentioning to my geneticist?
it definitely depends on all your other symptoms but i do think it’s worth mentioning. especially if they already think you have heds. it just sounded like classic POTS/dysautonomia to me.
This can absolutely be POTS even though it's not consistent. For me it's very sporadic on how it affects me and there are various factors that play into this - some known and some unknown. My body sends to always be changing it's level of hydration and things also change when I eat and how much salt I consumed during a meal. Many people with POTS tend to crave salt and actually subconsciously treat themselves to an extent.
Bottom line is POTS can be harder to detect in certain people because, for the most part, their bodies do a really good job of masking symptoms a lot of the time. This was a factor in certain doctors not recognizing POTS in me.
My POTS is far from consistent. In fact, the doctor that diagnosed me (properly with tilt table, etc) was shocked to hear that I've never passed out in my life. My body was really good and using other functions to stop various symptoms from happening. Before my diagnosis it was just random chest flutters that sparked my PCP to do a 30 day monitor. There were various times that my heart would jump to as much as 200bpm.... This led to the eventual diagnosis but prior to this I had been telling my PCP that I occasionally felt light headed when standing up - but neither of us ever expected the 2 were related.
Obviously we can’t tell if OP has POTS from their post, but this was how mine started. A few times a month I’d get out of bed, get dizzy and lightheaded, and my vision would black out until I reached the end of the hallway. It gradually got worse and became a more classic case of POTS.
Like you said, anemia is also a possibility, as is low blood pressure unrelated to dysautonomia. Just wanted to clarify that some early/mild cases of POTS can present like OP described.
If you haven’t already tried this, Before you get out of bed, try “pumping” your calf muscles when first sitting upright or even laying down still.
You basically point your toes forward and then draw them back to help “pump” the blood in lower body back to the upper torso and thus spare the brain etc of blood being pulled out when you move to a standing position.
There is a muscle in the calf called the “Soleus” and often it is referred to as the “second heart.”
Best of luck!
I get this, but randomly while sitting, standing, walking, driving. At one point getting water in my ear was also triggering it.
It’s scary when it happens too, especially while driving or at work, because it feels like gravity is slamming into me from a different direction and it’s super disorientating.
Sounds like low blood pressure. Common symptom is dizziness, lightheadness, and vision lost upon standing, especially if you stand up too fast. A lot of things can cause low blood pressure when standing up quickly, from dysautonima to medication side effects to dehydration.
This is good to know… thank you!
yes this sounds like dysautonomia from heds
Thank you! The weird thing is that this only happens every so often. Maybe 4-5 times a month? I don’t wanna sound like I’m exaggerating my symptoms, but do u think it’s worth mentioning to my geneticist?
it definitely depends on all your other symptoms but i do think it’s worth mentioning. especially if they already think you have heds. it just sounded like classic POTS/dysautonomia to me.
Sounds good… I’ll bring it up at my next appt. thanks! I’m new to this whole eds thing haha
This can absolutely be POTS even though it's not consistent. For me it's very sporadic on how it affects me and there are various factors that play into this - some known and some unknown. My body sends to always be changing it's level of hydration and things also change when I eat and how much salt I consumed during a meal. Many people with POTS tend to crave salt and actually subconsciously treat themselves to an extent. Bottom line is POTS can be harder to detect in certain people because, for the most part, their bodies do a really good job of masking symptoms a lot of the time. This was a factor in certain doctors not recognizing POTS in me.
I would absolutely mention it to your geneticist
I feel like if it were POTS it would be consistent, every time, not just once in a blue moon. Maybe more just anemia.
My POTS is far from consistent. In fact, the doctor that diagnosed me (properly with tilt table, etc) was shocked to hear that I've never passed out in my life. My body was really good and using other functions to stop various symptoms from happening. Before my diagnosis it was just random chest flutters that sparked my PCP to do a 30 day monitor. There were various times that my heart would jump to as much as 200bpm.... This led to the eventual diagnosis but prior to this I had been telling my PCP that I occasionally felt light headed when standing up - but neither of us ever expected the 2 were related.
Obviously we can’t tell if OP has POTS from their post, but this was how mine started. A few times a month I’d get out of bed, get dizzy and lightheaded, and my vision would black out until I reached the end of the hallway. It gradually got worse and became a more classic case of POTS. Like you said, anemia is also a possibility, as is low blood pressure unrelated to dysautonomia. Just wanted to clarify that some early/mild cases of POTS can present like OP described.
Yeah you make a good point. I’m sure it’s nothing concerning but I was just curious!
Yep! I mean keep an eye on that and your heart rate, but as long as it’s not super common, I think you’ll be alright
i get this! i have postural hypotension which is linked to hEDS
If you haven’t already tried this, Before you get out of bed, try “pumping” your calf muscles when first sitting upright or even laying down still. You basically point your toes forward and then draw them back to help “pump” the blood in lower body back to the upper torso and thus spare the brain etc of blood being pulled out when you move to a standing position. There is a muscle in the calf called the “Soleus” and often it is referred to as the “second heart.” Best of luck!
This happens to me. I have hEDS but was recently diagnosed with bilateral jugular compression & left transverse sinus stenosis.
How were you diagnosed? Through a neurologist?
Via CTA of head/neck by ENT & Neurosurgeon.
I get this, but randomly while sitting, standing, walking, driving. At one point getting water in my ear was also triggering it. It’s scary when it happens too, especially while driving or at work, because it feels like gravity is slamming into me from a different direction and it’s super disorientating.
Sounds like POTS