Receiving My POTS Diagnosis
2017 ж. 2 Жел.
22 188 Рет қаралды
I finally received my POTS diagnosis after over a YEAR of searching for an answer.
Check out my other KZhead Channel:
/ 101rabbits
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SOCIAL MEDIA:
Snapchat: haley101rabbits
Instagram: / haleyslifet. .
Twitter: / 101rabbitshaley
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VIDEO INFORMATION
Camera used: Canon 7Dii, Canon T5i, or Canon G7x
Microphone: Rode Video Mic Pro or in camera mic
Editor: Final Cut Pro
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MUSIC INFORMATION
Thanks for sharing! I have a friend with dysautonomia. She first had symptoms nearly 20 years ago and had quite a journey in getting a diagnosis
Hi Hailey! I'm not sure if you will see this since you posted this video a while ago 😂 but my name is Lucy and I am a 14 year old girl who has struggled with there health a lot without telling many others from being scared. I found you around 4 years ago from your 101rabbits KZhead channel and I have always loved watching your informational videos and to improve the care of my two house rabbits Remy and Fern. Ever since I was 9 I have experienced feeling lightheaded, blacking out, high heart rate, brain fog, blood pooling/ discoloration in fingers and feet, always out of breath, major headaches, feeling shaky.. the lists goes on. When I confronted anyone about this they have told me that I just need to drink more water and exercise. I still exercise a lot and drink lots of water but it doesn't seem to help my symptoms a ton. This has taken a toll on my mental health because it's scary when you don't know what's wrong with you and I've have to sit out on activities and take it slow in school and daily life because I don't know how my body will react to certain things. I am finally getting a doctor's appointment to hopefully find an answer or some type of treatment plan. I have thought that I may have pots for quite awhile too since most of my symptoms line up but I just hope they can find something! I was wondering if you had any advice for me and what it was like for you to not being diagnosed for awhile if your comfortable sharing of course. I would love to talk to you more a if you would like to. My Instagram account is lucyeaton30. Thank you for putting a smile on my face on the hardest days❤️
I'm so glad you got the information you needed! I was always so worried when you told me your symptoms.
Thanks Sarag!
I'm so glad you finally had an answer :) You are so strong, Haley. Keep being the wonderful person you are
Thank you! You are so sweet!
You truly are my inspiration look up to you for being who you are even through POTS!!
Congrats on finally getting a diagnosis! As a fellow rabbit owner and POTSie (with EDS as well), I am always here if you have questions or need a friend or anything. Having an answer and having a doctor believe you means you can finally start to move forward! Just remember that not all medications and treatments will work the same for all POTSies, so try not to be discouraged if anything doesn't work as hoped. Anyway, congrats and best of luck moving forward!
Oh Yay! A fellow POTSie! I haven't been diagnosed with EDS but I wonder if I have hyper mobility syndrome or hyper EDS as I have chronic knee subluxations and am very over extended arms and legs. We have started some treatment (which I talk about in upcoming videos) and the process thus far as been very bumpy. :/ But I am determined to keep going!
Haley's Life Through A Lens best of luck! Always stay determined. It can be hard, but fighting is what we do. ❤️
Rachel Wayne I have all the POTS symptoms , I’m 19 I talk about it all the time with my mother especially when I stand up after laying down I see black for a few seconds and my heart races faster. But everytime i tell her she looks at me as if i’m lying or telling a joke. It actually sucks sometimes because i would really want her to understand how i feel and that it’s very difficult to breathe sometimes. This is not well known in my country my doctor also says that i don’t have to worry. The only medication he puts me on is paracetamol for my headache. But it sucks when you tell people how it hurts and they look at me as if i’m looking for attention or as if i’m lying
I was just watching POTS videos and this was recommended. I thought you looked familiar, I have watched some of your rabbit videos because I have 3 bunnies of my own. I also have POT Syndrome and it's been a long journey figuring out my problem. It started about a year ago, that I would get super dizzy when I woke up in the morning. My doctor thought it was Vertigo and gave me medicine for motion sickness which only made me fall asleep. The medicine didn't work and I was still dizzy every day. I just continued taking it because I thought "well that's what the doctors said so he must be right". One day I finally did pass out at home and my mom knew something was definitely wrong. I switched doctors and she sent me to a cardiologist for a echocardiogram and everything was fine with the physical appearance of my heart. They also did a Halter Monitor that I wore for 48hrs and they found I have an irregular heart beat and a significant number of arterial couplets. I also had braydicardic (very low heart rate) moments, which was strange for PO(T)S, T meaning tachycardia (fast heart rate) one moring I was very fatigued and couldnt even talk. My heat monitor showed my pluse was only 32. Its very hard to get up in the morning with a very low heart, I can barely function. A few weeks later I had a Tilt Table Test, which I passed out on meaning it was positive. They told me to drink Gatorade (a sports drink)and not limit my sodium. Later the Dr gave me a steroid called Fludrocortison but I don't enjoy taking it. In one school year I missed 42 days from not being able to function in the morning or passing out when I do get up. My brother makes fun of me and says that I'm faking it, which is very frustrating becuase he doesnt know what it's like. I may look fine on the outside but its hard every day. It's quite hard doing simple tasks, I can't walk for long periods of time such as walking around a grocery store. Overtime things have gotten a little easier since I know how to control them, if I'm about to pass out I usually get a sweat and know I need to sit down. I also know to sit on the edge of my bed for a few minutes before standing up in the morning. I just take it easy and try best I can everyday. They are still try figure out more, my next test is a sleep study to monitor my heart and brain waves over night and make sure I'm not having seizures in my sleep. It's been a long and frustraiting year and half. I'm glad you made this video and that you figured everything out. I wish you the best of luck!
I’m glad you’re figuring stuff out too! I know it’s hard when people around you don’t seem to understand or brush it off like it’s not really a big deal when you are suffering inside.🙁 it’s definitely not easy! I hope you find more answers and maybe some treatments to help better you!
I have the bradycardic moments with my POTS as well, which is when my heart rate spikes and then crashes and I pass out. My heart keeps pausing/stopping when it bottoms out like that. They tried Florinef at first with me as well, and all it did was jack my blood pressure up to unsafe levels. That stuff won't touch the underlying issue. Pyridostigmine during the day and Guanfacine before bed is what finally helped the best at treating my POTS. Other POTS medications include Ivabradine, Clonidine, Atenolol, and Propranolol. Sometimes it takes time and trying a few different medications before finding which works best for each unique individual patient.
Thank you for sharing, so important to me.
I think an in-depth video would be very beneficial for other people. Even if they don’t have pots they could still maybe take away something else that would help them in their own journey
I’m doing my tilt table test the 27th. What medication are you taking? If you don’t mind me asking. I’m currently on atenolol and switching to pindolol
I personally would be interested in another more in depth POTS video, but also, an updated Tourettes video and how that's going.
I’m so nervous. I’m gonna be going through the testing for P.O.TS and it makes me nervous. I’m always blacking out and I think my mom is making the appointment for the test. I just got diagnosed with ibs so that will be added on.
I been having fast heart when standing along with LOADS of other issues and they nearly did the hole test but they didn’t wait to for resting rate and they didn’t continue to wait 10 min. Only did it laying and one right after standing. Had to get stress test after just to try tests. Haven’t actually seen the doctor himself yet. The nurse practitioner was it and hardly asked me anything. But I have the list to show the doctor himself when I see him, (interest fact treadmill they started it at 1.5 and only took 2 min to reach 160bpm eye up the speed after 3. Not even a min in to 2 sped it they ended the test bpm was 197 😳 they were surprised...when they had me stand after everything returned to normal it jumped over 40 bpm just standing and did not drop. They didn’t bother to note it but hopefully I find out what’s up. ) Kinda concerned that I actually have this
I was just diagnosed with Pots two months ago!
Thanks for making this video☺️ I have an appointment with a cardiologist to hopefully get diagnosed. (Nervous) I’ve had the symptoms for about a year, My PCP has run every other test, very frustrating to not have an answer yet. PCP tried to dx me with anxiety disorder! But...... wait, I pass out when i exercise or mow the grass?!😞 Im Going to use your idea of bringing a list of symptoms! ✨Thank you ✨
A doctor misdiagnosing POTS as an anxiety disorder usually indicates the patient has hyperadrenergic POTS, since hyperadrenergic POTS mimics anxiety by excess norepinephrine and adrenaline overstimulating the sympathetic nervous system and "fight or flight" response. Doctors will often treat that type of POTS with Atenolol, Propranolol, Clonidine, or Guanfacine. Hoping your appointment went well!
I would love to know how things are going for you now.... are you on meds? have things improved? Im a hardcore researcher so my new cardiologist was very surprised when I went to our first visit I had been doing his recommendations for a month already lol 😂 I waited 3 months on stand still waiting for my tilt table test I waited 2 months then the day before they called and cancelled and only one provider did tilt table testing... so I drove 3hrs to have it done a month later.... enough was enough.....oh side note it was mentioned to me by an ENT on 4/20 LMFAOOOOOO but again im at a stand still its been almost 2yrs now maybe theres a post and I just didnt find it yet lol 😂 but youre alot like me I wrote down all my symptoms... pics... in detail where what why when heart rates....tested my blood sugar regularly water intake everything documented.... HELP THEM HELP YOU
Do you get this from EBV?
Have you considered a service dog?
Allie Edwards she has a bunny :) not service, but it’s helpful
I had a doctor tell me I’m making it up. They did an EKG (while I was laying on a table) and when it came back normal he said there was nothing wrong with me and everything was in my head. So fast forward three years im really struggling with my symptoms. We talked to a cardiologist and they quickly said bring me in for a consult and a few tests. I’m going Thursday! I really hope I can find out what’s wrong with me too.
What happened ?
So did they find anything?
I also have the same sypmthoms...also when I literally walk up 5 stairs I feel my heart out of my chest or If I've been laying on my bed and get up I feel like my heart is going to explode!I have GAD(general anxiety disorder) and I don't know If It's because of that....
i have generalised anxiety disorder and panic disorder. my cardiologist was convinced that it was anxiety until i did an active stand test. apparently pots sometimes gets misdiagnosed at anxiety
PLEASE GET CHECKED OUT IF YOU HAVEN'T ALREADY! I also have Anxiety issues, but have always felt breathless going up and down the stairs. Going up the stairs some days was a bigger challenge than others. My heart would jump to 140 bpm pounding out of my chest, heart beating loud in ears, heart skipping and thudding. I always attributed to being out of shape and the palpitations to anxiety (especially since the doctors kept saying that). These past 3 days I have been to the ER two times, and had to call an ambulance. First ER noticed when they would sit me up that my heart rate would shoot up from 80 to 100. He made me stand and it shot up to 125 to 150 at some points. Today, my heart rate was so high walking through the super market I had to crouch down to the ground and call for help. By the time paramedics came they said I had a form of tachycardia and my heart was beating normally but VERY fast. Had to go to the ER and then followed up with a doctor. Doctor finally said I may have POTS since it is so closely related to when I am doing physical exercise or changing positions. Please get checked out! I feel like doctor's really love to play the Anxiety card, especially since their so many overlapping symptoms. Sometimes you just have to ask yourself, was my heart racing before I was nervous, or was I thinking of something that makes me nervous when my heart rate went up. The biggest factor is repeated movements and results. If the things you mentioned are always triggering you, please get it checked out.
I haven't been diagnosed with POTS(yet), but I got a pulse oximeter, and from laying down to standing up my pulse went from 85 to 150. I'm pretty sure I have it. xD
Hi, my name is Natalie Tippetts and I also got diagnosed with POTS 2 weeks ago. I was wondering if you could tell me, in your opinion the worst part about having it and how you would get people to understand what you're going through. I am doing a project on POTS so it would be very helpful. Thank you.
Natalie Tippetts I recommend checking out my Instagram @haleyslifethroughalens . I talk a lot more in depth about POTS on there and have some posts explaining my journey
Loving your hair style😍❤️
I’m due for a tilt table test this month ! And I’m so nervous
Ffion Emery its not to bad, its hard but i found i worked it up way to much in my own head. Lol I just realized this is a 5 day old post, how did you go?
Rufio Shaw lucky! i had such a bad experience. and i even had it at cleveland clinic!
my bpm is around 70-80 laying down and shoots up to 140-170 ... it’s even gone up to 190 once i stand up :/
i’m going to the doctor tomorrow to hopefully get a diagnosis with pots. do you know if there is a correlation with alcohol and pots attacks?
For some reason, I don't get POTS episodes when I've had a moderate amount of alcohol. That's probably not the case with everyone, though. Vasodilating medications reduce my POTS, syncope, and Raynaud's; and alcohol is a vasodilator. For some people with POTS, alcohol has the potential to make things worse.
I know I'm so late but its called orthostatic vitals
Gurl your heart rate was very high. Mine can go as low as 60 lying down then standing will jump to 120 upon standing and continues to go up .
It’s actually not horrible! With exercise your heart rate can go to 170-180bpm and that’s normal! Obviously it should be elevated that much upon standing. When I did my test my heart rate went from 83bpm to 187bpm in a matter of seconds which isn’t abnormal with POTS (still not ok). Her heart rate actually didn’t go up quite enough for pots... 117bpm - 140 isn’t the 30-40 beats higher it needs for the diagnosis. Maybe they assumed she had it but was nervous while doing the test?
How is your pots now, please leave an update.
I have pots and it sucks
I wish I had an answer to my struggles! I’m only 15 so my doctor says I’m outgrowing my body and that there’s nothing I can do for the next few years. If my symptoms don’t go away by the time I’m 25- then I’ll get medication or help. It really hurt to hear that.
DurpyRainbow :P that is definitely not true! I’d look for a new doctor! Even if your symptoms got better with age, there is no reason they can’t help you until then! Or at least help with lifestyle changed
Haley's Life Through A Lens Thank you for the reply!! I’m going to start looking into other doctors or pots specialists to see after hearing from such great people like you in the pots community!! 😁
What doctor did you go to? A Cardiologist? Or something else?
Hello It’s me cardiologist or neurologist for referral to TTT
First
Jsbj wanna trophy?
You sound to me like you have allergies. You have to eliminate allergies to make much progress with POTS.