Often. Its called presyncope.
Do you guys have lightheadedness even when laying down? Sorry for the questions. Was diagnosed yesterday
tomi I sometimes do, usually I get lightheadedness when I move on either side. No need to be sorry at all
My daughter on the daily, 24/7. But she has never passed out!
I get presyncope all the time. But I also faint all the time too
Yup. The only time I have actually fainted was on my ttt after the nitro.
Yup. lightheaded every day pretty much but have never fainted. just very close
Me too. It’s awful. How do you cope
I pay attention to the early cues and get down. I sit, lay whatever I need to do. I also chug a big drink as soon as it starts. usually a Gatorade. It does help. But there are some days I’m down all day because of the dizziness and I just ride them out and/or take an extra Midodrine pill
I have fainted before but it’s usually in the shower. I’m usually very lightheaded and dizzy most of the time
Oneida are you able to tell when your about to faint
Oneida is fainting scary? It’s become a fear of mine
Maybe you need to put a stool in your shower and have cooler ones? Shower fainting is very dangerous!
tomi yes but I usually can’t stop it. It happens so quick I do t feel anything. I just wake up with the shower running and my head buzzing
nelle I do have a chair and I take cool showers but it still happens.
Oneida prepare ahead of time with a seat then.
Oneida damn! Hope it improves for you!
nelle thank you it doesn’t happen to often, but it does happen. I try and shower only when someone is around
Are you lightheaded even when ur bp and hr is normal?
tomi no. Only from moving from sitting to standing or when I’m down on the ground and have to get up. Stairs too. My heart rate gets super high causing the lighted headedness which is very annoying.
All day, every day.
All the time
Yes. I’ve only gone down once that I know of. But they said that was from a seriously depleted sodium level. I get dizzy all the time. In a flare, I get the grey edges rimming my eyes, like it’s closing in.
Yes, I get where my vision goes black from the outside in and I almost pass out, it happens a lot but I’ve never lost full consciousness. It’s really scary
Blackouts? I get these full boy goes weak and feel sick I have to get to the floor as quick as I can, once it's passed I feel sick for the rest of the day
Since this started, I have always had pre syncope episodes. I've greyed out, but never lost consciousness. Get really tired and queasy after a grey out.
Often. I do both. get lightheaded without fainting and faint.
I have never fainted but I frequently black out while standing
Yes all the time
Yes. I've never actually fainted because of my dysautonomia. Severe dizziness like a swimming sensation, light headedness, brain fog, fatigue, heart palpitations have been my main symptoms.
How long have you had this?
15 years, but I now control my dysautonomia very well with natural supplements.
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I don't mind at all!
What supplements do you use?
Standard Process Hypothalamus PMG has made the biggest impact! I have found other natural supplements, too that have supported my overall health.
That’s good to know! I had to go on a beta blocker because I couldn’t function and I have four kids. I really want to be off it though so I am trying to find ways to replace it.
Drema I had 4 kids when Dysautonomia hit me. It was so hard to manage. I had so much guilt about what I couldn't do for my family. Looking back, it was hard, but a bonding time for our whole family. We loved each other and we took care of each other. We learned so much about God and our reliance on Him. I wouldn't change a thing. I'm praying for you!
YES! It has been a scary but very good experience for our family. As weird as that sounds. Ha! I’m so thankful my husband is an associate pastor and was able to make his schedule to what our family needed it to be at the time of all this. I will be praying for you as well!
Syncope, presyncope, all of it
When did this first start for you?
It was going on back in my 20s and just gradually got worse
Me. I lose vision, for a couple seconds. But I’ve never fainted
Yes never fainted but feel so lightheaded and weak and have to sit down or lay down to feel better.
Every single day I feel hungover I am so lightheaded, but have never fainted.
I have fainted before diagnosis and beta blocker but not since. Now I just have a drunk walk often where I stumble and walk sideways and get a few seconds sometimes when I turn my head or eyes where I feel disoriented a few seconds.
Yes I do that. it sucks, I am so sorry.
Thanks, I feel sorry for all of us dealing with this.
Yes, from all my research only 20 to 30% faint. I was diagnosed 4 yrs. ago I have really bad dizzy spells that I thought I was going to faint but I immediately lay down.
Just got diagnosed always dizzy and only passed out once that lead to a broken foot and then finally lead to a tilt test
Yes and a lot of times extremely dizzy!
Light headed frequently had many near syncope episodes and faint maybe 3 times a year
I’ve only ever blacked out from donating blood. If you have POTS don’t be an idiot like Angelique at 21. Both times I donated my friends would say “Angelique you have anemia and low blood pressure perhaps you shouldn’t donate” but 21 year old Angelique persisted until she woke up on the library floor
God prevented me from donating blood the 3 times I had appointments to! 1. I was underweight. 2. I had had mono recently. 3. My ovarian cyst ruptured and I almost bled to death internally, needed surgery, and a blood transfusion and, surprise! found out I was pregnant with my 3rd child (who is now a beautiful 20 yr old!) I had Lyme back then, and dysautonomia, I'm sure. so thankful God intervened! Live and learn!
The Red Cross of Greater Portland has called me so many times I have told them: 1. I have POTS my doctor doesn't want me to donate. 2. No thank you 3. No thank you please take me off your call list 4. I have gotten a tattoo while abroad I am not qualified (they told me it wasn't a problem what? ). 5. I can't donate but may I offer my healthy sibling with the same blood type? 6. I'm sorry I am all out of blood. 7. What if I told you I had chronic anemia? 8. You have the wrong number 9. Angelique Vander Stoep is actually deceased- this is her next of kin- please take her off your call list. I don't like lying about my status as being very much alive however declaring my death was my only way to get off the list.
I don't faint since beta blockers but I get a few seconds of disoriented once in a while after turning my head or eyes.
What beta blocker are you on?
Currently I'm on bystlolic. At diagnosis I was put on propanolol, then changed to metoprolol, and now bystlolic.
My 21 year old POTSie - lots of near fainting and uses a chair in the shower
Sure do. Just sitting her using I pad. Dizzy and lightheaded. Did manage to vacuum and dust. Home health nurse coming to check on hubby. Can't have her think we are slobs.
“Why not both?”—my equilibrium
Pretty much all the time
I have fainted bit I feel lightheaded constantly
All the time.
Yes. I thought maybe I didn’t have it because I didn’t.
Yes almost every day very lightheaded and feel like I’m going to black out but I don’t
Me to! How do you cope
tomi I just kind of deal with it which sucks because there isn’t much that helps! Sometimes if I add like 3-4 tablespoons of Himalayan salt to a few Oz of water and drink it thought the day it helps a little
Oh and have you ever heard of alka seltzer gold? I first started taking it for my Lyme treatment but found it helps with some of my pots symptoms also
Herta what does the Alka Seltzer help with?
Janeth it has 1050mgs of sodium so when I’m feeling really bad if I have low bp or feeling really dizzy it helps relieve it a little also it helps with stomach bloat etc
I haven’t fainted for 2 years but I get lightheaded all the time
Are you on medication for the fainting?
I just know when to sit .
tanya is the fainting from the tachycardia / low bp when standing? Sorry for all these questions. Just diagnosed
Not sure tbh . my blood pressure gets high when a stand and low when I lay down. I have hyper pots
I used to pass out when I was younger but I've since managed bringing myself out of it when it's about to happen or when I started feeling dizzy. I have passed out a couple of times over the past couple of years but not regularly like I was 20 years ago. Still get dizzy here and there but mostly when I'm overheated, dehydrated, hungry, or too active.
Yes, every day.
Our daughter has it happen often. Just diagnosed with POTS.
I’ve gotten extremely close to fainting but haven’t yet.
Me too. What do you do to help the feeling?
I have to sit down, or brace myself on something if I can’t sit, and wait my vision to come back and my head to stop spinning.
All the time
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Several times a day. everyday
Yes, I fight it all day, as long as I move I can fight it off.
Happens often to my daughter
I dont faint often but lightheaded daily. Sometimes I halfway faint if that makes sense lol!
Yes me to
I haven't fainted in years but still get anxiety attack with light headiness to the point I have to lie on the floor ( I feel I going to fall through) not my bed or couch