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POTS Success Story
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- Опубликовано: 7 май 2023
- POTS SUCCESS STORY - Carolina Functional Neurology Center - www.carolinafnc.com
Kylie came to us after months of debilitating Postural Orthostatic Tachycardia Syndrome (POTS) symptoms. She was experiencing significant tachycardia, adrenaline surges, and was just extremely sensitive to the world around here. Kylie was sensitive to most medications she tried and many of them made her worse.
When we started treatment we had to do everything passively with significant breaks and at times even that was too much and could send her into an adrenaline surge. After 3 months of consistent treatment and Kylie really started to make a turn in the right direction.
Here are some before and after videos of Kylie! Kylie is able to move around freely now without tachycardia and has begun exercising at home daily! CONGRATS KYLIE!!!
wow. I can’t imagine a life right now where someone says to me: get up and go and I actually can. Thank you for the hope. I’ve been suffering for so many years misdiagnosed. It’s gotten so much worse after each time I’ve had covid
Please look up the medical medium pot’s please
@@Misanthrope144 thank you so so much. My daughter was recently dx which doesn’t surprise me. It’s just getting harder I’ve had it for so long. I’ve passed out so many times it’s scary. Thank you again 😊
After I got Covid for the second time is when all my troubles started. After months of ER visits, my doctor finally sent me to do a tilt table test and I passed out after standing for 17 minutes. Finally got diagnosed with PoTS amd long Covid
@@kimarredondo7546 sending gentle hugs. Have you found anything that helps your symptoms. I know what makes it worse but not much to actually feel better.
@@Misanthrope144thank you do you have personal experience with this helping?
For anyone who has pots take 200 mg of benfotamine (b1) before bed and 500 mg if magnesium. take 2 tsp of Celtic sea salt a day (through out the day with water and drink half your body weight in oz in water. If you are 150 ibs drink 75 oz of water a day. Just always make sure you pair water with salt for blood volume. But anyway. B1 is helpful in controlling the autonomic nervous system which is responsible for pots. I've had pots since I was young hut never knew what it was and all this helped with lots of my symptoms.
How long did it take to feel better after using benfotiamine?
@@user-lw8yj5nt3chi! For me it was fast, probably a couple days.
Does this really work?
This could work for pots caused by hypovolemia. Don't just take medical advice from the internet though. Certain supplements can even be dangerous in high quantities and for some people especially. It's best to talk it over with your doctor, or at least stay within in the recommended amounts from public health agencies.
Water is less of a problem, but overhydrating isn't great either. If you don't have low blood volume, it won't help. Vitamin B is important, but if you aren't deficient, won't do much, it's expensive pee. Recommended is about 1mg, depending on gender and age, luckily it's not toxic in high doses, but you don't need nearly as much. I don't know where 200 is from. 500 mg Magnesium isn't usually recommended, but not outlandishly high. Some people might get sideeffects from it though, at that dose. More isn't always better and we don't need the same amounts.
If you try stuff, don't do it at all at the same time, you won't know what helped.
It won't work for everyone. Don't make, or take sweeping advice.
@@vinc885200 mg of b1 is low. Most people take upwards of 1300 mg. And as for magnesium, 500 mg isn't much either. RDAS are extremely low. They are the bare minimum. Majority of the world population is deficient in magnesium. As nobody eats 10 cups of veg a day which is where it mostly comes from.
I think I have POTS. But I saw a cardiologist and all they did was take my sitting b/p and HR and then immediately after standing. There was small increase in my HR but I usually peak around the 7-10min mark. I feel so unseen. I called you guys 🤞🏼 I’m hoping I can come see you for a better examination.
That's how mine is and I'm in the process of getting diagnosed as well.
@@thegracklepeck Stay as positive as possible. I saw an electrophysiologist and they’re sending me to neurology for a “dysautonomia type symptoms” no diagnosis yet but definitely closer!
push for a tilt table test from a pots specialist... there's only two in my whole state (i know it's ass to find one) but they're the most reliable doctor to go to and most effective to get a diagnosis if you have a hunch it's pots.
@@144gia yes! I just saw neurology and they’re doing a whole work up (finally)
My daughter did tilt table age 16 it was the worst experience ever! Apparently she wasn’t hitting mark but feeling awful so they kept going and when I read the notes “ patient was saying please stop please stop i feel awful please stop “ they stopped when her heart rate basically bottomed out after all the stress. Was done at John Hopkins after yes you have pots drink lots of water and eat more salt ….
Such a helpful video! Im going to start working on my POTS right now by doing ...... well nothing because you mentioned zero about how to help people and instead you just want money and for people to visit your clinic and prioritize that over health. Thank you for serving our country!
Exactly. And get up and go isn’t going to give a true HR reading anyway as the blood is circulating by walking so it’s not having to work harder to get it back out of the legs.
Not saying that it’s easy road for POTSies if we “just move” because I’d be on my face if I did this…
But I’d like to see the real data of her HR horizontal to vertical “before & after” AND also in the after of just stand up still, and if the HR doesn’t spike +30 any point within 10 minutes, then it’s *not* POTS.
But a good starting point is knowing which type of POTS, and managing symptoms from there (sodium & potassium & so.. much.. water.. and more sodium. Graduating compression stockings.)
The dysautonomia major websites, and local to your country are useful for lots of support for anyone looking for *actual* information
Love how you don’t tell anyone how
She went through Carolina Functional Neurology Center's Dysautonomia Program. For more information on what is included in the treatment program, please visit www.carolinafnc.com.
I'm in Serbia, not easy for people with pots across the world (100 diagnosed cases in France, even less in Serbia where I'm actually). So any help will be welcome
Seems lots of these videos do that for views.
@@carolinafunctionalneurology
People would continue to go to your clinic and you wouldn’t lose costumers by sharing what made her story successful. It’s actually repulsive that you’re trying to capitalize on people’s pain. You’re not a politician - you’re doctors!! Wth
@@mi10perso34Hej, i ja imam Pots. Jesi li ista bolje?
I don't know if I have pots or not but I git dizzy just watching this. I failed the at home turn table test horribly.
I hope this could be me in a few months. I am almost certain that I had it because I got covid 2 years ago and then I injured my neck and then started experiencing these symptoms but the doctors just kept telling me it was anxiety until I went to a chiropractor and she said I injured my neck and it caused some nerve damage and I am showing signs of some laws of Sensations in my right side of my body. Had the doctors actually did their job, I wouldn't have needed to go to a chiropractor to find out what was wrong with me. I get these attacks where it feels like I'm being hanged upside down if I stand or sit for too long. My legs and arms sometimes would start shaking and I know at that moment I need to go to a bed so I wouldn't hurt myself. I was seizure-free up until I had this injury and my neurologist refuses to do anything about it. They told me they don't believe that it's neurology and that I should go to my primary doctor and who knows what my primary doctor is going to say. I hope he doesn't Gaslight me like the other doctors did. But I wouldn't be surprised because most doctors care more about getting their money then they do about finding a true diagnosis and helping patients with treatments. Instead they just tell them that it is all in their head and that it is anxiety and they'll see you in 6 months, lol.
Metoprolol and regular exercise had helped my POTS so much.
good evening I suffer from potitis, can you tell me what exercise you practice please
@@turican14 recumbent biking was amazing as my first step. Starting there and cycling as long as you can and increasing the resistance. Then I started doing some basic weight lifting when seated. Lots of workout machines at the gym are seated which makes it great start instead of free weights. Then rowing was also good for my health. Getting in the rowing machine and doing it for about 500m at first and then overtime I started doing 1000-2000m in one sitting. I walk on the treadmill for about 30-40min 3x/week. It's difficult at first, and even now i still have my days, but it does help tremendously. In combination with my beta blocker, I am able to workout and feel better. There is a workout protocol for people with POTS if you look it up on the internet.
God bless her ❤
Really? My cardiologist has tried to get me a pacemaker 3 times. I keep saying no.
If it's going to save your life why not? 😮
Well damn, i want your dr. Most wouldnt even recommend it. I guess be happy you dont feel youre bad enough to need it
They are removable you know...
Pacemaker for ?
@@vocalsbymohsinPeople with POTS. It stands for Postural Orthostatic Tachycardia Syndrome. It means that based on your posture, your pulse gets too fast. Orthostatic meaning caused by an upright posture.
So for people with normally functioning systems, when you go from laying to sitting, and sitting to standing, your heart rate drops a little bit, as does your blood pressure, and then your body quickly recovers it, most people don't even notice it happening. With POTS, your heart starts racing and your blood pressure plummets. Many folks with POTS have working dogs who are trained to do something called DPT or Deep Pressure Therapy, where the dog alerts you, you sit down up against something so your back is supported, or lay down, and the dog will lay on your legs, putting pressure on you, helping to correct your blood pressure externally. A pacemaker would prevent the tachycardia (too fast heart beat) from happening in the first place, keeping the heart beating normally and evenly, and preventing a fainting episode, which commonly occurs with POTS and the rise in heart rate and fall in blood pressure. Hope this helps!!
How did you make this progress? Astounding
My brother: why are you walking like that.
Me: AHHHH
But how, how did you manage to get to that success. That’s what I need to know. I’m struggling so bad right now.
mestinon
Amazing
How?
She went through Carolina Functional Neurology Center's Dysautonomia Program. For more information on what is included in the treatment program, please visit www.carolinafnc.com.
I need this
Why don’t you put what you did to help her? :(((
good evening I live in France and I have POTS, do you have any advice or exercise to help me please
some people say vitamin B1 benfotiamine helpled them ...
How??
HOW?
She went through Carolina Functional Neurology Center's Dysautonomia Program. For more information on what is included in the treatment program, please visit www.carolinafnc.com.
I’ll be laying down and I can feel panic SOMETIMES my heart rate will be 70-100 depending but most of the time 88-95
When I even move like if I just roll over it will go to 105-110
If I sit up sometimes it will stay normal and sometimes 140-144
If I stand it will sometimes do a 170-140 and sometimes it will stay normal like 110.
Sometimes I can feel anxiety symptoms and sometimes I won’t.
These also come and go. Like for two weeks I’ll feel this and the next two I won’t.
I will get a little faint feeling but if I breathe in and breathe out it will go away just kinda like the standing heart rate will relax but if I walk around it will get high again.
It’s ups and downs. It never always does it every day. I do have anxiety disorder but I generally don’t understand what’s going on here
Adrenaline dumps can happen frequently for people with pots/ disautonomia, especially if you have pre existing anxiety disorders. If you have hyper pots, your fast heart is caused more often than not by excess adrenaline being released without need, so it makes sense that this happens to you while sitting or even laying too. I hope you get the help you need. Sincerely, a tachy girl with hyperpots
Any centers in Miami?
No, but we see many out-of-state patients! For more information visit www.carolinafnc.com
Google it dear there are many doctors out there that can help
how
She went through Carolina Functional Neurology Center's Dysautonomia Program. For more information on what is included in the treatment program, please visit www.carolinafnc.com.
It’s just a video of someone walking? This has nothing to do with pots and doesn’t explain or help anything lol
Kylie came to Carolina Functional Neurology Center after months of debilitating POTS symptoms. She was experiencing significant tachycardia, adrenaline surges, and was extremely sensitive to the world around here.
When we started treatment with us we had to do everything passively with significant breaks and at times even that was too much and could send her into an adrenaline surge. After 3 months of consistent treatment, Kylie really started to make a turn in the right direction.
This is a before and after video of Kylie. She is able to move around freely now without tachycardia and has begun exercising at home daily. For more information on our dysautonomia treatment program, please visit www.carolinafnc.com.
I have POTS and if I got up and walked like that my heart rate would hit 130+. So the fact that it stayed low is phenomenal and you can tell by her reaction that isn’t normal for her based on her history. So hers probably also spiked high in the past just walking a few feet like that.
They hoard the helpful info.
Go carnivore. Real salt. And b1.
WORK ON YOUR LIMBIC SYSTEM
Is this as real as long covid is
B vitamins helps this syndrome 👍
Really? Which type of vitamin B.
Pls help me, I have the same problems.
@@leylahasanova480 vitamin B1
No, they don't. I take tons of different B. It's no use
@@AlbaLynxQueen any solutions ?
No it doesn't maybe for some, not for me. I think it depends on how serious it is.
Pacemaker
Is it really the pacemaker?
No pacemaker. She went through Carolina Functional Neurology Center's Dysautonomia Program. For more information on what is included in the treatment program, please visit www.carolinafnc.com.
Fraud video
Kylie came to Carolina Functional Neurology Center after months of debilitating POTS symptoms. She was experiencing significant tachycardia, adrenaline surges, and was extremely sensitive to the world around here.
When we started treatment with us we had to do everything passively with significant breaks and at times even that was too much and could send her into an adrenaline surge. After 3 months of consistent treatment, Kylie really started to make a turn in the right direction.
This is a before and after video of Kylie. She is able to move around freely now without tachycardia and has begun exercising at home daily. For more information on our dysautonomia treatment program, please visit www.carolinafnc.com.
Exercise is how. You will not get better without it.
Definetly!
Exercise makes me pass out sooooooooooooo
I also have other chronic conditions and can't really exercise
and mine was actually worse when I was really fit and biking around my block 12+ times daily
it's almost like you're not a doctor
Excercise brings worsening of symptoms even more
I suspect i have this since covid and my docs keep saying it might be anxiety 🥲 i might be forced to pay for private (i live in sweden) assessment if my current doc wont send me to do cardiologist to do the tests and find out. It really really sucks
The same thing here
I’ve been forced to pay completely out of pocket for a specialist here in the us because docs refuse to believe me and do the right tests. If he’s as good as his reputation says then it’ll be well worth it for me (I see him at the end of this month)
How?
She went through Carolina Functional Neurology Center's Dysautonomia Program. For more information on what is included in the treatment program, please visit www.carolinafnc.com.
How?
She went through Carolina Functional Neurology Center's Dysautonomia Program. For more information on what is included in the treatment program, please visit www.carolinafnc.com.
They just want your money. That’s why they keep writing the same response.