Syncope after eating

[DizzyGirls]

My daughter has been passing out after she eats breakfast.  This is a new thing, but, by no means the only thing she's got going on (does anyone ever have just one thing at a time???!).  That being said, I'm sure this happens to many of you!  So, what do you do when this happens to you?  My guess is most likely post prandial (sp?) hypotension, but would be interested if anyone else has a different diagnosis for theirs!  Thanks all!

[CallieAndToby]

I've been having the same problem! To get through college, I used to fast..... I didn't realize there was some dysautonomia involved. If I eat now I get very very ill, and feel like passing out. I've tried eating just light things like cucumber or melon and it still happens. I've asked my mother for just soup for lunch but still get sick after that. 

[DizzyGirls]

@CallieAndToby22I'm sorry that you are going through this, too!  In between when I posted this and now, my daughter had an appt with her hematologist.  It was just a 6 month check-in, but I'm so glad she went!  It turns out that her ferritin level is low and most likely explains why she's been passing out so much!  It's really hard with POTS to determine what is a POTS thing and what might actually be something else.  I always remind myself, this is why we keep a hematologist in our back pocket!  She's a super doctor and it's been great to keep her on with our "doctor crew"!  Have you had any labs to check your blood levels recently?  Our situation was a reminder that it's good to keep up on labs.  You never know what's going to tank!

[Nicky]

Hopefully the Ferritin levels are the answer. but for me my bloods were all ok so - I agree with your postprandial hypotension theory - when I first had severe POTS symptoms, passing out when eating was a common thing for me. I also had problems getting up from lying down and using hot showers/baths etc. So fro mornings, I found the key to managing everyday stuff like this was to spread everything out. I formed a routine of only showering in the evening when I could lie down and rest afterwards. I planned the nights when I would wash my hair and dry it (which I got in the habit of doing less frequently) as holding my arms up was for some reason especially exhausting. In the morning, I took time to adjusting to being upright before eating. Took on fluids first. Waited a bit (maybe 30mins) and then ate - small meals that are easily digestible. Over the years, I've found pacing is a key thing. It's tempting to overdo it when feeling well to make up for lost time! (I did loads of sports at a really high level before POTS so whenever I had a glimpse of recovery, I overdid it - until I learned better.) I'd say, from my experience, the key thing is to not ask your blood to go to too many new places at the same time! I'm infinitely better these days. Thankful to say, it's been years since I did a face plant in my dinner. A key thing for me in managing the dizzys has been to practice breathing into my belly, nice and slowly and controlled. When pots kicks in and sends your head spinning, your heart racing and you feel like you are going to pass out, its really unnerving and being afraid of those weird feelings can make things worse. I found I had to practice breathing when I was not having an episode so that when I did have a POTS flare, I found it easy to use breathing techniques that help get my body back under control quicker. Hope this helps some. Good luck with it.

[Pistol]

@Nicky - GREAT advice, thank you for sharing! I too have found all of your tips successful to avoid syncope and flares. 

1 hour ago, Nicky said:

. It's tempting to overdo it when feeling well to make up for lost time!

This is soo true - and it took me years to learn this the hard way. Developing a routine is key, and hydrating before meals, keeping meals small and also eating frequent snacks between meals has been extremely helpful to me in avoiding post prandial POTS symptoms. 

[CallieAndToby]

14 hours ago, DizzyGirls said:

@CallieAndToby22I'm sorry that you are going through this, too!  In between when I posted this and now, my daughter had an appt with her hematologist.  It was just a 6 month check-in, but I'm so glad she went!  It turns out that her ferritin level is low and most likely explains why she's been passing out so much!  It's really hard with POTS to determine what is a POTS thing and what might actually be something else.  I always remind myself, this is why we keep a hematologist in our back pocket!  She's a super doctor and it's been great to keep her on with our "doctor crew"!  Have you had any labs to check your blood levels recently?  Our situation was a reminder that it's good to keep up on labs.  You never know what's going to tank!

Sadly, when I had my bone marrow biopsy, they messed up and did not test properly for iron and ferritin so that's still a mystery. My latest labs are abnormal but not really relevant to this thread. 

 

 

[yogini]

On 2/6/2021 at 6:47 PM, DizzyGirls said:

My daughter has been passing out after she eats breakfast.  This is a new thing, but, by no means the only thing she's got going on (does anyone ever have just one thing at a time???!).  That being said, I'm sure this happens to many of you!  So, what do you do when this happens to you?  My guess is most likely post prandial (sp?) hypotension, but would be interested if anyone else has a different diagnosis for theirs!  Thanks all!

What is she eating?  Dysautonomia patients often do better with small amounts of food more often.  I find that true earlier in the day - I can eat less and I can have a big meal for dinner.  I don't faint but if I eat a large breakfast I can't function or think.   

It might be helpful to measure her blood pressure at in the morning before she eats.  Drinking water or gatorade first thing in the morning might help with the BP and then she can eat a little after her body absorbs the drink(s).  Coffee also works for some people but that can be a mixed bag

[WinnieBlue]

My symptoms are worse after I eat. I do all my errand running in the morning and dont eat food until 11am. This is one reason i cant work anymore. I am absolutely miserable after I eat and i cant go longer than 12-1pm without eating or that makes me faint. I know that when you eat more blood is directed toward your gut to aid digestion and with PoTS we already have trouble with keeping blood in our head and extremities. 

I have not found the answer or any remedies. I do sit with a heating pad on my belly after i eat to help the blood flow and digestion but doesnt help with fainting. I need to get my blood checked but getting my blood drawn is one of my worst triggers. I faint and/or vomit during the blood draw and afterwards im sick as a dog all day. So naturally i have a phobia of blood draws 

[Pistol]

@WinnieBlue - have you tried to eat small snacks rather that meals? I don;t tolerate meals, especially high carbohydrates like pasta dishes etc. For years now I have been avoiding meals ( I only eat tiny amounts at meal times ) but eat healthy snacks like protein bars ( even half of one ), yoghurt, bananas or other fruit, nuts etc. This has been helping me a lot, both with POTS/NCS as well as the stomach issues caused by dysautonomia. 

[yogini]

15 hours ago, WinnieBlue said:

My symptoms are worse after I eat. I do all my errand running in the morning and dont eat food until 11am. This is one reason i cant work anymore. I am absolutely miserable after I eat and i cant go longer than 12-1pm without eating or that makes me faint. I know that when you eat more blood is directed toward your gut to aid digestion and with PoTS we already have trouble with keeping blood in our head and extremities. 

I have not found the answer or any remedies. I do sit with a heating pad on my belly after i eat to help the blood flow and digestion but doesnt help with fainting. I need to get my blood checked but getting my blood drawn is one of my worst triggers. I faint and/or vomit during the blood draw and afterwards im sick as a dog all day. So naturally i have a phobia of blood draws 

A heating pad dilates blood vessels and would probably make pooling around your stomach and likelihood of fainting worse.  Have you tried eating very small amounts of protein?  What helps me the most with eating is drinking two large cups of peppermint tea in the morning.  I can't eat before that has absorbed into my system.  I assume this is because I am waking up dehydrated and it boosts my blood pressure.   When things were really bad, I drank broth followed by water. 

[DizzyGirls]

I'm sorry I'm a little slow at responding to everyone's helpful suggestions!! My daughter had her first iron infusion this past Friday, so she's even worse than when I wrote this post!  Definitely think she needs a couple of bags of saline at her next infusion.  That's a must!  Anyway, she drinks about 12-16 oz of smartwater before she even attempts to get out of bed and I have switched to giving her Florinef early with her dose of meds that she takes before she gets out of bed.  This has been helping some.  I remember now, that when she tried taking iron before that it really gave her an extreme POTS reaction.  She does eat very small meals and actually had to go Paleo because her body is missing the enzymes that it takes to digest anything that is a carb or has sucrose in it (she does have enzyme supplements to enable to eat limited amounts).  Oddly enough, she does well with high fructose corn syrup because it's a single chain sugar, sucrose being a polysaccharide.  That's another story, tho!  She's also got gastroparesis that we are always working around, as it seems to kind of come and go.  Basically, she is a mess, but hoping once she gets her ferritin leveled out maybe she'll do better.  EDS and Dysautonomia.....the gift that keeps on giving!  Thanks all for your help!!!

[CallieAndToby]

A few things I want to add. I've been wondering if I have EDS. I have no veins! I can't even get saline iv's any more and that's the only thing that remotely helps although most of the fluid retains in my stomach/gut area; florinef makes me extremely ill, it does something to my autonomic nervous system that I can't really explain..... I am just wired and tired from that medication. I am scared to eat or drink as well. The water is going straight through me and I'm tired of water with the salt tablets! I only eat in the morning, slices of cheese, some blueberries, and cucumber sliced with salt and I feel like I need to sleep immediately after eating; this has been a problem since my teen years. 

2 hours ago, DizzyGirls said:

I'm sorry I'm a little slow at responding to everyone's helpful suggestions!! My daughter had her first iron infusion this past Friday, so she's even worse than when I wrote this post!  Definitely think she needs a couple of bags of saline at her next infusion.  That's a must!  Anyway, she drinks about 12-16 oz of smartwater before she even attempts to get out of bed and I have switched to giving her Florinef early with her dose of meds that she takes before she gets out of bed.  This has been helping some.  I remember now, that when she tried taking iron before that it really gave her an extreme POTS reaction.  She does eat very small meals and actually had to go Paleo because her body is missing the enzymes that it takes to digest anything that is a carb or has sucrose in it (she does have enzyme supplements to enable to eat limited amounts).  Oddly enough, she does well with high fructose corn syrup because it's a single chain sugar, sucrose being a polysaccharide.  That's another story, tho!  She's also got gastroparesis that we are always working around, as it seems to kind of come and go.  Basically, she is a mess, but hoping once she gets her ferritin leveled out maybe she'll do better.  EDS and Dysautonomia.....the gift that keeps on giving!  Thanks all for your help!!!

Back to the EDS, how do you get properly diagnosed? They've been using the same vein on me for many many years, even in the ER they can't find any veins, I noticed this was an EDS type problem.. I have used a heating pad on my bladder for years and it's the only thing I have for severe IC pain, nobody treats pain any more. I tried iron (all types) about 8 months ago b/c my platelets are super super high but it made me sleep all the time and the prescribing doctor could not explain it. I wish somehow all these issues could be looked at collaboratively and solved somehow. 

 

21 hours ago, WinnieBlue said:

My symptoms are worse after I eat. I do all my errand running in the morning and dont eat food until 11am. This is one reason i cant work anymore. I am absolutely miserable after I eat and i cant go longer than 12-1pm without eating or that makes me faint. I know that when you eat more blood is directed toward your gut to aid digestion and with PoTS we already have trouble with keeping blood in our head and extremities. 

I have not found the answer or any remedies. I do sit with a heating pad on my belly after i eat to help the blood flow and digestion but doesnt help with fainting. I need to get my blood checked but getting my blood drawn is one of my worst triggers. I faint and/or vomit during the blood draw and afterwards im sick as a dog all day. So naturally i have a phobia of blood draws 

You are exactly correct about the blood vessels in the stomach, my mother has been a GI nurse for 30 years and she says that is exactly what's happening, blood being drawn to our stomach to digest. I too get very very ill after blood draws, I am sorry to hear you have this issue. 

 

[Pistol]

4 hours ago, CallieAndToby22 said:

Back to the EDS, how do you get properly diagnosed?

Physical exam and geneticist.

[DizzyGirls]

@CallieAndToby22- It's all so complicated, isn't it!?  Both of my daughters were diagnosed with EDS and POTS by a neurologist at Stanford's Autonomic Clinic.  He's sort of the EDS guru of the West.  They did the whole tilt table thing and we got their diagnosis and testing done in one day.  Upkeep is done by their local doctors.  We were fortunate to have a POTS cardiologist among our local crew!  He's a godsend! You don't have to go to a big University clinic, though, if you are lucky enough to have a doctor that is knowledgeable within your local area. (Neurologist, geneticist, or PCP (if you've got a good one!)).

Have you tried midodrine?  My daughter can't actually take that one, but some people can, and if you can't take the florinef, maybe this would help.  My daughter has no veins either!  She warns anyone who tries to take blood.  She knows which vein actually does produce blood and how to get it, the fact that they pop and roll, and that it's always best to warm her veins before!  She also tries to go well-hydrated, a huge help!  We've had a couple of cocky ones try to get it their way, but never works. 

My daughter can't take salt tablets anymore.  She just sticks to smartwater and variety of other things throughout the day.  Usually she drinks around 3-1/2 to 4 liters a day. 

[cmep37]

 

On 2/16/2021 at 10:06 PM, CallieAndToby22 said:

Back to the EDS, how do you get properly diagnosed?

There are 13 different types of EDS - most of us with POTS have hypermobile EDS and hEDS is far and away the most common form.  The different types of EDS and what criteria you need to meet for a diagnosis can be found at EDS Types | The Ehlers Danlos Society : The Ehlers Danlos Society (ehlers-danlos.com) I saw 3 different rheumatologists before being diagnosed with hEDS - the first 2 seemed to think you couldn't have it unless there was a family history of it but that's not the case. Thankfully I don't fully dislocate joints often but I do partially dislocate a few times a month.  If you don't fully meet hEDS criteria but you are hypermobile you might still have HSD which is treated in the same way as hEDS.

[CallieAndToby]

19 hours ago, DizzyGirls said:

@CallieAndToby22- It's all so complicated, isn't it!?  Both of my daughters were diagnosed with EDS and POTS by a neurologist at Stanford's Autonomic Clinic.  He's sort of the EDS guru of the West.  They did the whole tilt table thing and we got their diagnosis and testing done in one day.  Upkeep is done by their local doctors.  We were fortunate to have a POTS cardiologist among our local crew!  He's a godsend! You don't have to go to a big University clinic, though, if you are lucky enough to have a doctor that is knowledgeable within your local area. (Neurologist, geneticist, or PCP (if you've got a good one!)).

Have you tried midodrine?  My daughter can't actually take that one, but some people can, and if you can't take the florinef, maybe this would help.  My daughter has no veins either!  She warns anyone who tries to take blood.  She knows which vein actually does produce blood and how to get it, the fact that they pop and roll, and that it's always best to warm her veins before!  She also tries to go well-hydrated, a huge help!  We've had a couple of cocky ones try to get it their way, but never works. 

Thank you. I actually have terrible bladder problems and I can't drink anything with citric acid or potassium, which is very frustrating. I can't take midrodine because it actually makes it very hard to urinate and that's already an issue (it tightens the bladder). All my health problems are fighting each other and I don't know what to do. My veins are tiny and roll as well, the veins on my hands always blow. I don't have a geneticist in my city and my neurologist did a lot of blood work but that's all. 

 

4 hours ago, cmep37 said:

 

There are 13 different types of EDS - most of us with POTS have hypermobile EDS and hEDS is far and away the most common form.  The different types of EDS and what criteria you need to meet for a diagnosis can be found at EDS Types | The Ehlers Danlos Society : The Ehlers Danlos Society (ehlers-danlos.com) I saw 3 different rheumatologists before being diagnosed with hEDS - the first 2 seemed to think you couldn't have it unless there was a family history of it but that's not the case. Thankfully I don't fully dislocate joints often but I do partially dislocate a few times a month.  If you don't fully meet hEDS criteria but you are hypermobile you might still have HSD which is treated in the same way as hEDS.

This is very informative thank you. Unfortunately there isn't anyone near me that could evaluate and diagnose this. We have decided to move so I hope I can find great physicians in the near future.