♡ Terrible POTS Day, Tips to dealing with POTS! (15.08.17) | Amy's Life ♡
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- Опубліковано 14 сер 2017
- ♡ Terrible POTS Day, Tips to dealing with POTS! (15.08.17) ♡
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I honestly am crying rn. I’ve wanted to find someone like me for so long and now there’s an entire comment section who have been through some of what I have!
There are some really nice pots Facebook groups that help me not feel alone with my symptoms. Good luck
watched your videos and recognized some symptoms & guess what I just got diagnosed with EDS and POTS thank you for helping me find a diagnoses!!!!!
Yeah I'm jist about to go to the doctor to get checked out I been experiencing most these symptoms for like 2 or 3 years.
I have been diagnosed with POTS for a year after dealing with severe symptoms for 4 years. And none of my doctors listened to me, three doctors told me to my face that I was faking it. I still have trouble getting help when I need it, but it’s helpful to see someone who can live a normal life with it.
I have pots, too. Medication seems to help with my heart rate, but not with the actual pots, symptoms. I'm sorry that you're going through this. Hugs.
I have a POTS hack
Problem:blood pooling can be painful (just me?) And no one likes pain
Answer: put the blood pressure cuff round your leg and start it
Best. Thing. Ever
Thank you for your vlog. I am newly diagnosed and trying to figure it all out. I am just dizzy and nauseated all the time. Most of the time I just lay in bed all day because I am tired and when I get up, I’m dizzy. Ugh!
Stay strong with God your never alone I'm here if you ever want to talk anytime I mean it I'm right here with you God bless
Thanks for the PoTS tips Hun, I don't really have many days where my PoTS isn't bad I faint nearly 2-3 times a day it's so awful hope your feeling abit better soon xx
I have pots as well and it was really bad until I got some medication for retaining salt. Its pretty okay now but I don't know whats going to happen when I have to get a job.. But stay strong ❤
Annalee Langnes yeah my doctor said I need to eat a lot of salty food and drink a ton of water to retain the salt but I have this weird thing that I never eat foods with added salt.
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You are incredibly brave! Sharing your story will help so many dealing with similar symptoms, and it seems therapeutic for you as well! Keep your head up and keep fighting!
Aw this video has helped me a lot. I have been diagnosed with POTS and the way that you keep a positive attitude is awesome❤️
POTS often goes hand in hand with Ehlers danlos syndrome. So, if anyone has not been tested, research EDS. All are side illnesses of EDS, I know as I have all of them
Kelly Roberts Not true. Yes, there are subset conditions but many people have EDS and do not have POTS/Dysautonomia.
I ran an errand today in town. We live in a country mountain hollow, so going to town is quite a trip for me alone. When I woke up today I should have not went out. My pulse rate was 150 and my Pulse Ox was only 82% when I woke up. Every time I stood up it just kept getting worse. Having temps in the 90’s today doesn’t help either. I do black out even in public, if I’m standing or walking around at all. It’s going to be a long summer!
I'm newly diagnosed with POTS and this helps so much!!!
Thanks for the POTS tips. I needed them 💕
My heart racing used to woke me up and bc of that I had panic attacks bc i didn’t know that I had pots...
I’ve just been diagnosed with PoTs and it’s hard for me because I’m in college far from home so it’s a struggle and not easy
i needed these tips
Your such a brave lovely girl!💕💕
Oh you so beautiful and helpful. Rest In Peace
This is interesting, I haven't been diagnosed with POTS since no GP's will take me seriously, but I have constant migraines and dizziness when standing, I have a racing heart and I feel breathless with aching arms and legs. It all happened after I had complications with endometriosis. I can no longer eat anything but salad and dry plain food. No energy drinks, my food takes hours to digest. I thought I might have a similar condition to you but I saw you have an energy drink next to you. If I had that I would be in hospital! I guess mine is still somewhat a mystery.. you're a big inspiration to me and so many other chronically ill people! (I just started following you) 💛🌞
Iesha Paige go to a cardiologist with a specialist is electro something I got diagnosed first appt after testing
Iesha Paige same the doctors don't take it serious an hospital only the doctor that told me I had it but the last medicine I got on made it worse I almost fell down the stairs I was so dizzy an light headed
Iesha Paige some one I dance with has POTS and this year for her solo she recorded a speech about pots and all of us were crying. Her next dance she passed out and I felt so bad
Thank you for the suggestion on the pulse oximeter! I just added one to my online Walmart buggy! Found a pretty purple one with a silicone case, lanyard, & batteries included. Great reviews & affordable enough. I have all the symptoms of POTS but no diagnosis. My heart rate goes high enough, my boyfriend can physically feel it. Sometimes you can see this like sight “muscle spasm/twitch” in my boob. I see black, my head pounds, & I get really dizzy. I either pass out or almost pass out & fall. Get dizzy to the point I look & feel drunk trying to walk. That’s pretty much any time I’m upright. It all started after some severe head/face trauma that I never went to the dr for, long story. The night it happened, I had been laying in bed for awhile & had just finished posting something on FB. I got up slowly (I was in a ridiculous amount of pain), & all I remember is the things I mentioned above. I woke up slumped against the wall FTFO trying to figure out what happened. After I realized I had passed out, I checked my FB to find the time stamp on the post to figure out how long I was out for. I was out almost 40 minutes. Been having those issues ever since. 🤷🏼♀️ Took me 10 + years to get my fibromyalgia diagnosis. My gut instincts tell me that diagnosis is either incorrect or incomplete. I’m hoping if I can show my dr physical proof of what I’m experiencing, that maybe, just maybe, she’ll look more into it & help me figure out wth is going on.
I know you posted 3 years ago, but energy drinks is usually a big no no with people with pots. She even says in the video she usually avoids them.
I am totally feeling you with the Dysautonomic issues. I feel pretty horrible these past few weeks since I am no longer getting meds through my NJ tube (until I get my GJ tube) and my medications are not being absorbed as well. So I am struggling very hard with symptoms and my vitals are insane. I am currently relying on my 2.5 liters of TPN a day to raise my blood volume. I could definitely benefit from more symptom management
Madison I hear you 🙏🏼✨
I have POTS too and I hate it I wish people would understand how I feel I wish I could get better help the last medicine I took made me have worse symptoms I almost passed out an fell down the stairs
Before I was diagnosed I was rushed to the hospital because my dad had caught me after I passed out in the kitchen I was so hysterical
April Alcantar me too, I jave gotten WYA worse blacking out 3-4 times a day
April Alcantar same😫😫😫
4:55 Woah I have a pulse oximeter too. I have it in a little case that I've been carrying it in for the past 6 months.
I know there are many ways like phoning or texting if you need help but have you ever discussed a pendant. I have one but its on the wall next to my bed. It alerts someone that I need assistance. I've not used it yet (fingers crossed I will never need to) because I us my phone. Also what formula so you use?
Thanks for sharing!God bless!
I’m scared, I’m looking at all these videos and I have all these symptoms (except fainting, but I black out) and I’m scared I won’t be able to live an ordinary life
I'm wondering about putting a mini-fridge in the bedroom in place of a nightstand or maybe over by the armchair, as I'm often home alone and if I can't even walk around (stuck on kitchen floor the other day when I wanted a drink) to get myself a yogurt or pedialyte popsicle or cold water. 🤔 Right now I'm hoping for an insurance wheelchair in the near future to help get around without collapsing, and on my nightstand I just use a giant water bottle to keep full.
Hi not wishing to be a know-it-all but doesn't a pulse-optimeter not work properly with nail polish?
I wish you lots of luck.
Wow! That is a FAST heart rate :( ...my reaxed heart rate is like 58-60.
The Cardiologist said I most likely have POTS. I have fainted many times (I landed in AWFUL positions) and my resting heart rate when we went to A and E was 213. I always feel dizzy when I stand and I only really feel ok when I am lying down. Is this like POTS? Loves and hugs from fellow chronically ill buddies xxxxxxxxx
Yes sounds like POTS
I've been diagnosed with pots for 2 yrs now and this month there hasn't been a single dayyy that i didnt feel so much lightheadness...it's just some days i dont have debilitating fatigue abd i can study (if my eye problems and brainfog also let me) ...i was wondering if others are like this too...or you guys just have bad pots days and the lighthead and difficulty breathing is not there 24/7. Btw i'm also totally bedbound on my bad pots days and cant use bathroom without help either
Is there s reason why you don't use a sport watch / heart rate monitor instead of the thing you have on your finger? I just would think it's s lot more handy as you can use your hands and just have a watch on your wrist.
HelixShape I have both xx
HelixShape for me the finger monitor is more accurate then the wrist band
I found a good odometer at Walmart for $20. Smart watches & fitbits are a lot more than $20. That was my reason for going that route. At least for now. :)
I have POTS but with me the heat makes me worse so if I have a hot drink or go for a shower it makes my heart rate go like 180 and my blood pressure drops also I can't even go to school at the moment. it's really hard to do anything like it's really hard to concentrate, quick question does anyone with POTS get memory loss ?
I have had memory loss one time.. but it was only temporary, and came back after a few minutes.
I know how you feel
Is the feeding tube related to the pots? Have you tried a beta blocker or corlanor for the tachy?
I think the feeding tube is for her gastroparesis but I'm not entirely sure
I'm 11 and I have POTS. It sucks cuz my doctors dont want me running around or doing P.E or anything because if I do then my heart rate will get higher and its already high enough. My doctors want to put me on medications but my mom says no because I'm only 11. But my mom is thinking of getting me compression socks/compression stockings
My doctors told me to do gym as much as possible. I was diagnosed when I was 12, and they did put me on meds, they didn’t work and gave me Insomnia that still lasts today, switched meds, didn’t work, took me off for about a year, and now I’m back in the stressful journey of finding meds.
I wish you luck! Also, don’t believe anyone if they don’t believe you, or belittle you for ‘being too young’
Look up DNRS by Annie Hopper for POTS recovery
Do your medications help with your POTS? I was on carvedilol (beta blocker) for a few weeks, but I still experienced large increase in hr upon standing even though my overall hr was lower. I had to stop it because it was causing me to have borderline low blood pressure and I wasn't having ANY symptom relief. I've been on ivabradine now for about two weeks, and I also have no symptom relief. I know there's other meds like midodrine and florinef that I haven't tried tho. I'm just wondering, is there any purpose of staying on meds if you aren't sure they help? And again, do your meds help? I don't expect to be "cured," but I would at least like to try treatment. Not being on meds would make me feel like I'm not doing anything to treat it.
Oliver Likes Cats I'm on two types of blood pressure medication and 3 beta blockers they do help loads before the medications I was fainting 8+ more times a day, somtimes you just have to stick with them to see a difference, but on bad days or if I'm in a flare they don't help much haha xx
Oliver Likes Cats Have you taken anything like Propranolol? I offset it with Fludocortisone which keeps things under control.
Oliver Likes Cats I was on atenolol (beta blocker) for probably a year and a half and experienced no relief. I went to a new specialist who put me on propranolol. He said atenolol didn't work for me because it works by lowering bp and mine is naturally too low
Compression socks didn't work for me and it jus really bumbed me out. Staying home from school today and it's getting worse I'm falling behind and my mom keeps trying to act like any day now I'm gonna get cured but I have to change my life and I'm only 16. I wanted to get a doctorate in psychology but now idk if I'm going to even graduate highschool. I'm really scared and I just wish I had someone else with pots to talk to. I feel like I'm just screaming into the wind but I have nothing else to do
How are you now?
A few thoughts for you or anyone else who may come across this:
1. My EP suggested thigh high compression, but the physical therapist said abdominal compression, like Spanx, is actually better. (I use both.)
2. To give you some hope, I earned a doctorate while having severe issues. (It wasn't easy. 😫 ) That said, I'm now disabled from all the fainting and head injuries, so while my message is to maintain hope,
also be flexible and allow yourself to adapt to whatever type of life and work best supports your health. Sometimes in life, our plans get derailed, and that's ok. You need to live the life that makes sense for who you are NOW, not who you were X years ago.
3. I hope by now you've joined some online or in-person support groups.
4. Don't expect most healthy folks to understand our struggles. It would be great if they did, but it's usually just not gonna happen to the extent we really need it to. (And, similarly, we should all remember that others out there are going thru things WE can't understand. So, we all need grace and compassion.)
5. Speak up about WHAT you need, but remember that you don't owe anyone a detailed explanation for WHY, especially if they're questioning you less from a desire to understand and more from a desire to "prove" that your "why" isn't valid.
You need Ivabradine. Slows the HR without lowering the BP. Far better than Beta Blockers.
what about DNRS? Look up Patrick Ussher pot recovery stories
how did you get diagnosed with pots in the uk? my gp wont take it seriously.
Fortunately, I didn't really have that problem, but maybe see a different GP and asked to be referred to a cardiologist xx
If you haven't been diagnosed yet, I suggest dr gall at kings college London. He can be seen privately and on the nhs. I was lucky and diagnosed in hospital due to my heart rate being so high and fainting. I hope you find help
Seeing a neurologist can be a help also. They can send you for a tilt take test & sweat test among other tests you'll go to what's called an autonomic lab and that can give them some answers as to if you have dysautonomia /POTS
I live in the UK and none of my gps listen either
How did u end up living on Australia ?
what is “feed”?
I think when she refers to feed, she refers to the nutrition running through her feeding tube!
You drink tea, but that can increase heart rate. I don't get that.