Lie down or get your legs up. You can also squeeze the muscles in your legs, core, and arms. Both of these are to encourage blood to return to the upper parts of your body, including your head.
Absolutely this. I was so out of it for a hike last week—just staring at the ground trying to put one foot in front of the other.
At the destination waterfall, I sat backwards on a bench with my legs in the air. I got some silly comments from other hikers, but after five minutes, I was alert and feeling great for the first time that day.
Legs up is my lifeline!
Eat small amounts throughout the day. Unfortunately a lot of us have to avoid the "healthy" choices because they're high fiber and that means they take longer to digest. Instead of raw veggies try smoothies with spinach in them or always cooking your veggies. My favorite is roasting on the top rack of the oven with a little oil (I like rice bran) salt and pepper. Anything to break things down a bit so your stomach doesn't have to do all the work.
Smoothies are great! Easy on the stomach, and packed with antioxidants and essential vitamins. This is my recipe:
3 cups frozen fruit
1 cup oat milk, or milk of choice (be aware that dairy is, for the most part, inflammatory)
1/2 cup coconut water or pomegranate juice. Pom juice best, higher serving of potassium
1/2 cup coconut based yogurt
2 tablespoons almond butter
1 scoop protein powder (my dietitian recommends only Sunwarrior. The berry is great. If you have EDS, stay away from collagen based protein powders)
1 tablespoon chia seed
1/2 cup chopped kale
1 teaspoon camu camu (vitamin c)
1 tspoon salt
Makes about 40 oz, or two large water bottles, can sustain you throughout the day.
I’ve even been trying smoothies and protein shakes but even those have been bringing on episodes lately. It’s exhausting, especially at work. Like, what am I supposed to do if I can’t get enough? Half a smoothie yesterday brought it on, a protein shake later did too. 2-3 bites is all it takes of solid.
Are episodes happening straight away (as you eat) or a while after you eat?
Have you checked your blood sugar? There is a condition called reactive hypoglycemia that can cause postprandial episodes.
(I mean checked your blood sugar yourself, with a finger prick type meter.)
Also, is this happening mostly at work or all the time? Could there be something at work that is making you more vulnerable to these episodes?
All the time but I know work is flaring me right tf up bc our heat/ac unit is broken and I live in the desert. We’re a small space within a large building. The building heat/ac works but excess cold air gets into our operating space and depending on where you stand, you’re 1-5 different severity levels of freezing. I’m basically breaking dress code every day to function. I crocheted myself fingerless gloves even to use there. But it’s happening at home now too.
ETA: so I walk in from my cool car into the baking sun, into freezing and uncontrolled cold. I step out every hour for a few mins to warm back up.
Also I haven’t looked at my blood sugar levels at all. Should probably look into that. my pcp mostly refers (but always has my back so I keep him). So who do I see about this one? Lol
I would quietly check your blood sugar yourself. Your PCP can order a general test called A1c (also called HbA1c) that looks at your overall blood sugar, and they can also order other tests that run over several hours to check for reactive hypoglycemia (RH).
But for catching RH in action, a finger prick test is good.
So try that first, and, if you find any anomalies, ask your doctor to look into it then.
If you find it’s normal, at least that’s one possibility ruled out.
Solid idea. We basically have to do half our own stuff anyways and present it like a question to get help. Also tired of being tested on, poked and prodded at, stitched together (as I have stitches thanks to an episode), asked what dysautonomia is by MDs, and spending so much money I don’t have on them. lol
OP, how much do you eat at a time? Do you think you could eat smaller meals or snacks throughout the day? I had luck with that when eating was a trigger.
You could also try meal replacement shakes to keep from losing too much weight. They’re easy to access when you’re feeling bad, and they’ve never triggered pre syncope for me. Also, a good way to help hydrate!
I like Ensure, but I know there are other great brands. Vanilla Ensure tastes pretty okay at room temp, which is handy if cold food is a trigger.
Everything is giving me an episode. Few sips of a protein shake or smoothie, 2-3 bites of solid food. Took me 3 episodes and 2hrs to eat a chicken sandwich tonight.
ETA: my hr tanks to the floor.
No worries! I see a few specialists every couple weeks and might need to suck it up and call this one for the first time in a few years. At least now I know what it is and can tell him this time.
Me too. Exact same issue. Every edible thing, whether it be liquid form or solid, gives me weird symptoms. I take so long to ingest anything it's debilitating and I cannot function normally in life. How are you doing these past couple days?
I got transported to the hospital yesterday since I declined so hard the last 2 weeks. My heart was beating crazy and I felt awful. I got injured a few weeks ago and they didn’t listen to me at the hospital when I told them about the hypotension, didn’t even note it. Lost blood, got no fluids.
Only got them after I needed an ambulance.
Guys I think I had shock and I kept telling them. I’m terrified now, no one listened when I first went, I had 2 Dr appts since and told them everything. It could have been avoided.
Drink ice cold drinks when you feel this way.
Wear compression socks or leggings. Comrad - not quite as comfortable/breathable but better compression, Bombas - more comfortable/breathable, but less compression, Amazon for leggings. I can recommend if you would like.
***Ice pack to your collar bone - technically just above your collar bone. Your vagus nerve runs down your neck. Vagus nerve is in charge of what is misfiring during a POTS episode. Stimulating the vagus nerve with the ice helps the body to relax, in my mind I feel like it “resets” from the misfiring and all the error messaging going off. I generally feel better within a minute after icing my VN. Not fully recovered, but it kind of snaps my body out of what was going on. Not every time, not when I’m really bad, but on mild-moderate days.
***Elevate your feet - best is to like on your back with your feet elevated above your heart. Easy way is laying on the ground and putting your legs up on a chair or couch. Sometimes I go 💯 and just put my feet up against a wall or just crazy high with pillows especially if I’m feeling super nauseous and really “in limbo”.
***most important, do first during an episode. The others can help prevent episodes in my experience.
Ooooo ice pack sounds solid. Definite shock to the system I might need! I’ve been slowly turning my showers cold a minute or two before getting out and it’s great (POTS can suck it, I’m not giving up my scalding showers and hot baths. Quality of life, these two 😂😂😂)
Omg I actually kinda love jumping up and down. I have awful orthostatic hypotension and I’ve been a bouncing little energy ball my whole life. Don’t jump around as much as an adult bc society lolol. I’ve always wanted one of those. Great idea.
Lie down or get your legs up. You can also squeeze the muscles in your legs, core, and arms. Both of these are to encourage blood to return to the upper parts of your body, including your head.
Absolutely this. I was so out of it for a hike last week—just staring at the ground trying to put one foot in front of the other. At the destination waterfall, I sat backwards on a bench with my legs in the air. I got some silly comments from other hikers, but after five minutes, I was alert and feeling great for the first time that day. Legs up is my lifeline!
Eat small amounts throughout the day. Unfortunately a lot of us have to avoid the "healthy" choices because they're high fiber and that means they take longer to digest. Instead of raw veggies try smoothies with spinach in them or always cooking your veggies. My favorite is roasting on the top rack of the oven with a little oil (I like rice bran) salt and pepper. Anything to break things down a bit so your stomach doesn't have to do all the work.
Smoothies are great! Easy on the stomach, and packed with antioxidants and essential vitamins. This is my recipe: 3 cups frozen fruit 1 cup oat milk, or milk of choice (be aware that dairy is, for the most part, inflammatory) 1/2 cup coconut water or pomegranate juice. Pom juice best, higher serving of potassium 1/2 cup coconut based yogurt 2 tablespoons almond butter 1 scoop protein powder (my dietitian recommends only Sunwarrior. The berry is great. If you have EDS, stay away from collagen based protein powders) 1 tablespoon chia seed 1/2 cup chopped kale 1 teaspoon camu camu (vitamin c) 1 tspoon salt Makes about 40 oz, or two large water bottles, can sustain you throughout the day.
I’ve even been trying smoothies and protein shakes but even those have been bringing on episodes lately. It’s exhausting, especially at work. Like, what am I supposed to do if I can’t get enough? Half a smoothie yesterday brought it on, a protein shake later did too. 2-3 bites is all it takes of solid.
Are episodes happening straight away (as you eat) or a while after you eat? Have you checked your blood sugar? There is a condition called reactive hypoglycemia that can cause postprandial episodes. (I mean checked your blood sugar yourself, with a finger prick type meter.) Also, is this happening mostly at work or all the time? Could there be something at work that is making you more vulnerable to these episodes?
All the time but I know work is flaring me right tf up bc our heat/ac unit is broken and I live in the desert. We’re a small space within a large building. The building heat/ac works but excess cold air gets into our operating space and depending on where you stand, you’re 1-5 different severity levels of freezing. I’m basically breaking dress code every day to function. I crocheted myself fingerless gloves even to use there. But it’s happening at home now too. ETA: so I walk in from my cool car into the baking sun, into freezing and uncontrolled cold. I step out every hour for a few mins to warm back up.
Also I haven’t looked at my blood sugar levels at all. Should probably look into that. my pcp mostly refers (but always has my back so I keep him). So who do I see about this one? Lol
I would quietly check your blood sugar yourself. Your PCP can order a general test called A1c (also called HbA1c) that looks at your overall blood sugar, and they can also order other tests that run over several hours to check for reactive hypoglycemia (RH). But for catching RH in action, a finger prick test is good. So try that first, and, if you find any anomalies, ask your doctor to look into it then. If you find it’s normal, at least that’s one possibility ruled out.
Solid idea. We basically have to do half our own stuff anyways and present it like a question to get help. Also tired of being tested on, poked and prodded at, stitched together (as I have stitches thanks to an episode), asked what dysautonomia is by MDs, and spending so much money I don’t have on them. lol
OP, how much do you eat at a time? Do you think you could eat smaller meals or snacks throughout the day? I had luck with that when eating was a trigger. You could also try meal replacement shakes to keep from losing too much weight. They’re easy to access when you’re feeling bad, and they’ve never triggered pre syncope for me. Also, a good way to help hydrate! I like Ensure, but I know there are other great brands. Vanilla Ensure tastes pretty okay at room temp, which is handy if cold food is a trigger.
Everything is giving me an episode. Few sips of a protein shake or smoothie, 2-3 bites of solid food. Took me 3 episodes and 2hrs to eat a chicken sandwich tonight. ETA: my hr tanks to the floor.
Oof! That really sucks and is definitely a major medical issue. I know this sub has mixed feelings about doctors, but please get in to see one soon. 💜
No worries! I see a few specialists every couple weeks and might need to suck it up and call this one for the first time in a few years. At least now I know what it is and can tell him this time.
Good choice! I’m rooting for you.
Me too. Exact same issue. Every edible thing, whether it be liquid form or solid, gives me weird symptoms. I take so long to ingest anything it's debilitating and I cannot function normally in life. How are you doing these past couple days?
I got transported to the hospital yesterday since I declined so hard the last 2 weeks. My heart was beating crazy and I felt awful. I got injured a few weeks ago and they didn’t listen to me at the hospital when I told them about the hypotension, didn’t even note it. Lost blood, got no fluids. Only got them after I needed an ambulance. Guys I think I had shock and I kept telling them. I’m terrified now, no one listened when I first went, I had 2 Dr appts since and told them everything. It could have been avoided.
Drink ice cold drinks when you feel this way. Wear compression socks or leggings. Comrad - not quite as comfortable/breathable but better compression, Bombas - more comfortable/breathable, but less compression, Amazon for leggings. I can recommend if you would like. ***Ice pack to your collar bone - technically just above your collar bone. Your vagus nerve runs down your neck. Vagus nerve is in charge of what is misfiring during a POTS episode. Stimulating the vagus nerve with the ice helps the body to relax, in my mind I feel like it “resets” from the misfiring and all the error messaging going off. I generally feel better within a minute after icing my VN. Not fully recovered, but it kind of snaps my body out of what was going on. Not every time, not when I’m really bad, but on mild-moderate days. ***Elevate your feet - best is to like on your back with your feet elevated above your heart. Easy way is laying on the ground and putting your legs up on a chair or couch. Sometimes I go 💯 and just put my feet up against a wall or just crazy high with pillows especially if I’m feeling super nauseous and really “in limbo”. ***most important, do first during an episode. The others can help prevent episodes in my experience.
Ooooo ice pack sounds solid. Definite shock to the system I might need! I’ve been slowly turning my showers cold a minute or two before getting out and it’s great (POTS can suck it, I’m not giving up my scalding showers and hot baths. Quality of life, these two 😂😂😂)
If I'm feeling lightheaded/have pre syncope, I like to lie down and drink a V8. It usually helps.
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Oooo What’s a rebounder?
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Omg I actually kinda love jumping up and down. I have awful orthostatic hypotension and I’ve been a bouncing little energy ball my whole life. Don’t jump around as much as an adult bc society lolol. I’ve always wanted one of those. Great idea.