"i looked normal, so people thought that I was normal." Literally my life with P.O.T.S. So hard, been living with it for 6+ years. Thank you for sharing your story. It is so nice to know that I do not go through this alone. Every single word that you have said in this video, is what I have gone through. The tests, mayo clinic, not going to school, midodrine, antidepressants, salt, excersise, water, and all of your other words. #thestruggleisreal
I've been suffering with POTS since 2006. I made a video on the topic myself of anyone is looking for more first-hand accounts on living with this illness th-cam.com/video/cxNRrTSx37U/w-d-xo.html
I was diagnosed with POTS a little over a month ago and I have been sick for about 3 and a half years now. I broke down in tears watching this video because I found someone who actually knows and understands what I am going through. I have had to stop going to school partway through this year and tried home bound. I was only able to finish one class and after my first semester I had to completely drop out of school. My health was getting worse and worse and I had horrible brain fog (I still do). I am starting to get some of my energy back because I have started to do some exercise and I am doing my best to drink as much water as I can. I am also taking a lot of pills. I started taking salt tablets a couple of weeks ago but I had to stop because they made me extremely nauseous. Other than my energy levels getting better, I don't think my health has improved all that much. I loved hearing your story. I don't know if anyone else personally that has gone through this and I appreciated this
@@morningwithgracie7870 Each person is a bit different, so it sometimes takes time to find which medication or medications work best for you. The top POTS medications are Atenolol or Propranolol, Ivabradine, Guanfacine or Clonidine, and Mestinon. Mestinon has worked best for me, since it also treats digestive motility issues like gastroparesis, and it's now undergoing trials to treat ME/CFS and exercise intolerance. I also take a small dose of Guanfacine before bed, which treats hyperadrenergic POTS at its source by signaling the body not to dump so much norepinephrine and adrenaline into circulation.
I can't even explain how much this helps me. I'm 13 years old, and the doctors think I have POTS. I am getting tested in the next few days. We have been searching for a diagnoses for over a year and a half, and it has caused me to be really anxious and depressed. And, it really sucks. A lot of doctors have told me I am crazy, which I am absolutely not. It's really hard, I have lost friends because I can't do things, and people don't understand me. It really is hard, and it feels good someone feels me. My fatigue is super severe, My mom can't leave my side at all times because she's worried I will fall. I've been to school four days and they unenrolled me from missing so much. Thank you so much, it really means a lot you made this video! I don't know why we are the ones having to go through this (frankly, anybody!), but I know we can with God by our sides. God bless you!
New POTSie here - thank you for this video. You are so brave for sharing your story and helping others understand. Hopefully by now you have found a treatment that works for you. Stay strong!
It must have been so painful and frustrating that no-one really took you serious. Otherwise there would have been a diagnosis much earlier. So much precious time lost. But you're still standing. You are strong, incredible brave in my opinion. In a way I'm glad that you finally got recognition. Thank you for sharing...you are an amazing human being and it seems you're surrounded by amazing people as well. You deserve it.
I've had pots for 4 and a half months and I have never seen a video that describes pots better. I started crying because I know how you feel so much oh my god thank you for this video. I don't have as server as you but it's hard to deal with this in high school thank you again for this video.
I've been suffering with POTS since 2006. Unfortunately, my insurance does not cover any cardiologists that specialize in POTS or Dysautonomia. I want more than anything to be able to go to the Mayo clinic and see a doctor who understands what's going on in my body, but I cant afford it and have to settle for doctors who have never even heard of POTS and some have litterally called lazy. I have an uncle you constantly belittle me and call me a loser and a failure because I have not graduated college yet and cannot drive (apparently they rather have me faint at the wheel and hurt myself and others in a collision??) and say I pretend to be sick as a "copout". All I really have is my mom, dad, and my dads wife (she has a heart condition as well and has been nothing but understanding ever since first meeting her). The one person I confided in the most was my grandmother who passed away in 2018. She was bedridden every day, like me, and was always happy to talk to me no matter how awful she must have felt physically (she had COPD and a Brain Tumor, yet was brave and selfless enough to keep it from me to avoid stressing me out more). I've lost all my friends over the years and I've become fearful of even getting close to people because most people dont understand what I go through and get frustrated when I have to constantly cancel plans. Despite that, nothing hurts more than, how my aunt and uncle treat me. At 16, before I was diagnosed, we took a trip to Disneyland. I was terrified of fainting on the Pirates of the Carribean ride due to the drop and the beginning and politely decided to wait outside the exit whole everyone went. My gem of an aunt decided to stay behind as well and yell at me for 40 minutes straight about inconviencing my family for no reason and causing drama. She told me "grow up or I would end up alone and have nobody" I eventually rushed to a bathroom. There was a line and I ended up sobbing as I waited to escape to a stall. I never felt so useless and pathetic in my life. She still tries to email text me every few months with these insults. I've blocked her more time than I can count. At this point, isolating myself is more comforting that seeking support. I recently made a video on the topic myself of anyone is looking for more first-hand accounts on living with this illness th-cam.com/video/cxNRrTSx37U/w-d-xo.html
Molly, I feel for you and wish nothing but you getting over POTS soon. I have a 15 year old daughter who has very gradually been increasing the symptoms associated with POTS. She saw a pediatric rheumatologist a year ago and started taking beta blockers. She did not tolerate these well so she just quit taking them. She tried a different dosage and she is much worse. She is going to see a cardiologist next. She is an overachiever in academics and sports, and has always been conscious about eating healthy and being active (also has ADHD). Please take the best care of yourself, you seem like such a lovely young lady with a bright future! You taught me a lot about the effects of POTS in a teenage girl. Thank you so much and I hope today is a good day for you!
Sorry she is going through that. When beta blockers don't work or cause bad reactions, POTS specialists will usually try Ivabradine next. Did they try that with her yet? Guanfacine, Clonidine, and Mestinon are other options for POTS medications. Sometimes it takes time and a doctor who is up to date on the latest treatment options for POTS in order to work with a patient to figure out what works best for the unique individual.
Hi Molly my name is Samantha. I just got Diagnosed with POTS I'm 24 years old. I was misdiagnosed for the last 13 years of my life. it's be a long road and it's been a tough one. it's nice to see that I'm not alone. if you have time and a chance I'd like to talk a little more about things? it's been a tough 13 years. So seeing everyone on here is amazing! thanks for posting and talking about it!
Thank you for sharing your story, I have to go to Mayo Clinic soon ,a doctor thought this could be what I have ..I appreciate you taking the time to share , this can help so many others that are undiagnosed, I will keep you in prayer for total healing In your body..
You have my sympathy. I am 70 and suffer from metabolic orthostatic hypotension. I take some of the drugs you do along with droxidopa. My life is very difficult with this condition. I have hope, however, and I hope you and I both get better.
Thanks for this video Molly. My daughter was told this is probably what she has just this morning. She needs to go for the tilt test to confirm it. She has been using a wheelchair for the last few months because she never faints while sitting. If she didn't it would be happening half a dozen times a day at least. It certainly gives us a little piece of mind and she feels more secure now she has the chair as like you, she was hurting herself when she passed out. Might help your parents nerves a little bit too when they are not with you, I know has for me as she wants her independence and isn't around me 24/7. Good luck to you and I hope your progress continues!
Thank you for this video!! I have POTS too and just hearing your story resonated with me so much cause I feel like it is so similar to mine! I faint all the time with literally no warning and it is so annoying. It's really hard to deal with something like this and I'm glad that at least now I know there are other people who are like me and I'm not alone. :) I find that wearing compression stockings, drinking HEAPS of water, having lots of salt, and exercising helps me the most.
Great video to explain POTS! Hearing you speak about it, reminds me of how I felt back in high school... Keep Fighting! I've been battling with it for years and years! My symptoms were about the same as you when I was in high school and finally sent to the Mayo Clinic to be diagnosed at 17. I managed to make it through college (although it took me 6 years due to POTS). And I'm now 27 and working full time! Believe me, at 17 I never thought it was possible! Living with POTS has it's ups and downs.... I've had nearly a year where I was almost symptom free, and I've been completely bed-bound for nearly 6 months! Recently, I'm finally getting back on track with trying to get back in shape... and trying to get my life back. I just started making some videos to track my fitness progress, and ultimately want to spread awareness about the link between POTS & EDS & CSF leak.... I believe I finally figured out what was really going on all along and it wasn't just POTS. Hoping to connect with other potsies and help each-other out.
I can relate to that. POTS was the first diagnosis I received, which was part of my overall hypermobile type Ehlers Danlos syndrome (hEDS) symptoms and comorbidities. My hEDS causes a lot of other issues as well, one of which is digestive motility issues. Thankfully Mestinon (Pyridostigmine) is an emerging repurposed treatment option to treat both POTS and digestive motility issues. It's also undergoing trials to treat CFS and exercise intolerance. Hoping that your doctors are up to date on the latest treatment options for EDS and POTS, and have been able to figure out what works best for you!
hey from New Zealand :) I was just diagnosed with PoTS yesterday! I have low BP too although BP is not usually associated to PoTS from what I read. I have been slowly getting worse for the last few years but it DRs keep telling me it was anxiety and I needed counselling which I went along with but was persistent that something else is going on then I started passing and getting frequent episodes this year, some days I couldn't get off my floor. It wasn't until I googled reasons for fainting that I found out about PoTS I then went to my Doctor and said I think I have PoTS and was referred to cardio as he was concerned and I was correct. I currently have an event monitor for the week and I am going to try manage it with LOOOOTS of water, salt and exercise before I go down the med route as I am also a mum so If I have side effects I don't want to put my daughter in danger(like fainting). I really hope you are on the right track with your current changes, as I can only understand a little of what you go through from my own experience and it really sucks!! Also thank you for your video :)
There are dogs that can alert you before you faint. I'm on the waiting list myself and it sounds like you could benefit as well. They are not for everyone, but it's worth considering
Hi Molly! Just watched this whilst researching PoTS. I am so sure that this is what I have along with chronic migraine. I just got an oxymetre to keep an eye on my heart rate and measure it from lying to sitting to standing. Next step is getting the diagnosis and tilt table test. I hope that you are doing ok, I loved your honesty in the video. I have been so unwell these recent years and it's been a nightmare trying to get people to understand. I feel your pain. xx
I'm so sorry. I was diagnosed last year but it sounds like your symptoms are much worse. I know it can feel very lonely at times, especially when you appear healthy on the outside. Keep up the good work and I wish you all the best!! xxo
hey Molly, I Might not be diagnosed with POTS but I can tell you that there´s a God who heals everything who also has waited so long to have you in his hands, there´s hope Molly i know you´ll be healed by god´s grace, no matter what doctor said and what your parents said about it girl, YOU ARE LOVED AND BLESSED MOLLY
Brandon Kiyoshi Verduzco Reyes You do know that we live in a sin filled world and are born in sin. Even when we come to Christ, we will still suffer. However, He also uses that suffering to draw.us closer to Him. I've been praying for healing. My faith is strong and I pray, fast, read my Word and I'm not doubting God. I'm just extremely tired of going through this and it's a challenge of faith when you're faced with a chronic health condition. I've been suffering for many years and you're trying to provide hope by telling her to not think about it or acknowledge it. How can He heal when you don't acknowledge that you're sick. Jesus didn't come to heal the healthy or the so religious who don't need saving, but He came to the sick and those who knew that they were sinners. He did heal them, but there were also those whom He left to their infirmities so that they may always trust and rely on Him and not grow prideful. I said all of that to say this, Don't Tell someone that they're not sick because they'll never receive their healing and you don't know what God is working in them for that person to pour out later on into someone else. Look at Paul, Timothy and Peter.
@@SN-qg6jh But have you looked at Job. He didn’t sin and he still suffered. So that is actually not an accurate statement. However we can also suffer even when doing good and God just sees fit for us to go through suffering because He knows we can handle it and make us stronger. He healed me last year and He brought to my attention what it was that was causing it. I didn’t want to let my will go regarding a matter and I finally came to terms with it and I received my healing.
@@Whisper8819 yes i know about job.its not just him if you think about it,it is every baby.they don't sin.but i am a muslim and i believe we all lived somewhere before we came to earth,it wasn't just adam and eve.but we were all born through adam and eve.and also we must believe that god is just he only makes you suffer for your sins and we don't believe adam and eve or jesus suffered because of our sins.every soul is responsible for what it did,not what others did.this life itself is a suffering.good people suffer the most as their sins are being forgiven through suffering because they regret/repent all the time what they have done wrong. Edit:by repentance i mean if you repent you suffer in this world and if you don't you suffer in hell for the same sins but with more intensity.
Oh WOW! So sorry. My sister has had P.O.T.S a long time and I have just been diagnosed. It's no where near your condition. I had no clue or understand much about it even though my sister has it. I'm researching a lot. Yours is so severe:( I hope it gets a better. I cant imagine living like that. I do understand not having a diagnosis and people don't think or believe you're sick and you are just lazy. Been there :( God bless you.
Thank you for making this video. It was very courageous and you are very courageous.... My daughter has been through so much in the past 2 years. They have diagnosed her with chronic migraines and there has been so much medicine so many starts and stops. She has been fainting, shaking uncontrollably, sweaty then hot then cold. She is impossible to wake up in the mornings. The last time we were at her pediatricians office her blood pressure was high....they took it 3x and all different. They did not seem concerned but I was. 3 neurologists, now a team of docs at the Washington Pain Center and she keeps going down hill. I am not sure it is POTS but she has most of the symptoms. I found one doc that will see her in St. Louis. That specializes in POTS please share any questions that you think I should ask the doc? Your parents must be amazing because it is so painful to watch your child suffer.... My prayers are with you.
Those symptoms sound like the hyperadrenergic type of POTS, where the body's autonomic nervous system overreacts and dumps too much norepinephrine and adrenaline into circulation. Have they tried her on nightly low dose Catapres (Clonidine) to treat the tachycardia, sweats, and as a migraine preventative?
Thanks Molly, my wife went nearly a decade before getting diagnosed with POTS. It has been a real eye opener to see just how uninformed GPs and Specialists can be. No less than 8 doctors gave rubbish diagnosis. She was clued in to a Dysautonomia specialist near us in NJ, Dr Depace. He has written medical text books on it. Without that one break we would have never known. Sadly, she also has other complicating conditions that make life not worth living, in her words. She did improve with exercise until one of the other conditions caused her to stop. I can say when she got compression stockings it did help even though she hates wearing them. I didn't hear you mention them, but I might have missed it.
I don't like the feel of compression stockings, either. (I have size 18 feet, so they don't really fit.) Instead I get the compression calf sleeves like marathon runners wear, and they have been super helpful for my POTS (and shin splints, too). I especially like the spandex calf sleeves that 2xU makes.
I know I'm a bit late to the party, but this video was absolutely amazing! I have tentatively been diagnosed w/POTS, and to see another vibrant young woman going through it has given me confidence I lack in allowing myself to deal with my disease. Not that I want you to be going through it, I'm just thankful you were willing to share your story. My issue is my heart rate, not my blood pressure thankfully, so I've never actually passed out, I just feel like I'm going to. So I am on beta blockers and after about a week those really started working. My cardiologist is holding off on a tilt table test because in my journey for diagnosis, I had blood work done and one of the tests showed I have Sjogren's syndrome antibodies, and in early stages of Sjogren's it can present as POTS. So he wants me to see a rheumatologist to get confirmation of Sjogren's and possible treatment before he orders a tilt test. But back to your video, I am beyond thankful because it normalized everything I have been going through. My cardiologist wants me to start exercising again, and I'd love to. Exercise was my biggest hobby; I used to be a person who exercised 4-5x/week for 2hrs each time. But once I starting exhibiting POTS symptoms I ceased exercising completely. I have so much anxiety about exercising and causing myself to pass out that I'd just rather not push myself until I've been symptom free for a while. How did you find the courage to start getting your life back? How are you doing on your POTS jjourney now?
Sorry you have Sjorgren's and the other health issues. I have POTS from having hypermobile type Ehlers Danlos syndrome. Have they tried you on Mestinon (Pyridostigmine) to treat your POTS, dry mouth and eyes from Sjogren's, and to help reduce your fatigue and exercise intolerance? It's an emerging repurposed medication to treat POTS and Sjogren's, and is currently in clinical trials to treat ME/CFS.
hey, I've recently been diagnosed with POTS and I really loved watching this video. it's been a long journey of misdiagnosis and doctor referrals. is there any way I can contact you? you have such an amazing attitude and such a comforting aura!
My son was just diagnosed and he has the severe case also. He bottomed out on the tilt table test. They diagnosed him with vasovagal syncope. For years they thought he was faking. I kept pushing the matter with his condition because I wasn't happy with that. I felt like it was still something that was missing. So, I told the Doctors and it was alot that my son's pulse rate goes up just when he talks and his BP and pulse goes even higher when he gets up. He has headaches/migraines 24 hrs a day 7 days a week. No one would listen even when, the test showed what I was saying was true. It was right in front of them. To make a long story short God opened their eyes and allowed them to finally listen. They diagnosed him with pots. It is a daily struggle for years, but he got his G.e.d. :-) God bless you
Have you ever considered getting a service dog to help you? It would be able to help you get up after fainting and you would always have it there to assist you when you faint. It could also retrieve your meds if you are unable to get up and could pick up things so that you wouldn't have to bend over when dizzy.
This sounds exactly like my symptoms. This has been happening to me a lot lately and I'm almost done with my senior year. I want to get this figured out so bad. I've been to countless doctors and all they ask me every time I tell them my symptoms is if I'm pregnant. I'm switching to mayo from a different Doctor later this month. I am seeing a specialist and have a tilt table test and more bloodwork the day after my graduation. I live 20 minutes from mayo clinic in Rochester and I'm super glad to be able to live so close. Hopefully I can figure this all out. Thank you for making this video I related to you so much! Everything you said I completely understood especially about people's support and criticism. This helped me a lot!
You are so brave, I really do appreciate you posting this video. Male, just got diagnosed with POTS, blood pressure stays normal with me but heart rate jumps by 45.
Thank you for making this video. I have recently been diagnosed with P.O.T.S. My doctor says that my case is also really bad and I told him how long it has been going on and he said I may have had it since I was a child and I know how you feel because nobody believed me until recently.
This video was amazing to watch! Describes my life well. On top of pots I always have a chiari malformation on the right side of my cerebellum which causes me to get massive headaches on top of the issues of pots. I have had my ups and downs and this video has really spoken a lot to me. God bless and continue to remain strong, I know we haven't been dealt the best hand in life but we have to make do with what we have. #staysalty #werunamarathonjustbystanding
neurologicwellnessinstitute.com/dr-david-traster/. Dr Traster fixed my POTS after a severe concussion. I don’t have POTS anymore. Do you need surgery for your chiari malformation? I know somebody that did. Sometimes functional neurology can help with chiari. Anyway, he fixed my POTS. I need special forms of B12 and folate. All the best in your healing.
Sorry you have Chiari malformation. That can cause dysautonomia issues such as POTS, by putting pressure on the vagus nerve. Are you able to get surgery to alleviate the Chiari issues? Is your Chiari caused by a collagen based disorder, such as one of the 13 different types of Ehlers Danlos syndrome?
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. 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. Thank you for making this video and sharing your experiences for people like me.
I can relate to your story a lot, and my tilt table test also revealed my heart rate crashing after an initial spike, leading to bradycardic pauses of my heart. Avoiding that initial heart rate spike with a small nightly dose of Clonidine or Guanfacine has helped to prevent those crashes and has reduced my fainting. I'm also taking Mestinon during the day, which is a newer medication to treat POTS and fatigue. Calf compression sleeves and physical therapy to put on more leg muscle mass has also helped quite a bit. Hoping your doctors are staying up to date on the latest treatment options, and can find what works best for you. It sometimes takes time to try various options in order to figure out what works best for you as a unique individual.
Thank you for your video Molly my daughter also has Pots and ED syndrome and had to give up school I know what you are going through and I live in England and met Dr Grubb USA at a talk and I had 10 minutes chat with this great man and my daughter was so ill she could not attend, Now she is in a wheelchair and has Pots seizures but they now are not so bad as she takes life easy and it is one seizure a month but she hates them and they can appear out of the blue just like your fainting. But she has her family and lovely boyfriend who also takes care of her. The hardest part of Pots is not being believed but her seizures once or twice showed up at a good time in front of the doctors who then believed. Well take care.
hi Ann, Im sorry to hear your daughter is so ill. I have seizures after I faint and they've been put down to possible Reflex Anoxic Seizures. does your daughter have a diagnosis for hers? x
I hope your daughter is doing a bit better now! I also have EDS and POTS, my seizures were spinal related, but I know how hard it is to deal with it all. I also had to leave school.
Thank you Beth my other daughter had Reflex Anoxic Seizures she grew out of this at 6 years old and my husband started fainting too and it turned out he needed a pacemaker but an pulse Oximeter would have been great for all three of them. Her seizures are rare and they are Pots siezures. My daughter is in a wheelchair and we have accepted it and she also has accepted it. We have all moved on and are getting on with life the seizure is now once a month so some improvement she likes doing her party trick with the Pulse Oximeter people believe her now.
hey i am in the long process of being diagnosed with pots, although it is pretty much confirmed just waiting for the tilt test, 4-month wait! so painful. i found this so comforting to watch, knowing that there are other people out there living with pots. I belive i have had Pots nearly my whole life, you don't hear of many 9yr old fainting for no reason. My biggest struggle with the illness- besides the heart stuff is the drinking so much water and exercising, this has never been my strong suit, any suggestions to remind and motivate myself would be amazing!!!
After doing these try and think of the benefits of how it can make you feel better. I have the same issue when it comes to motivating myself. But I know that exercise can greatly help me feel better and I always try to remind myself as to what happens when I don't do it
I also did the tilt table but the results were inconclusive....figures, just pots trying to be sneaky again. Luckily I was able to meet with world renown pot specialist doctors at children's hospital Wisconsin 2 years ago. Man they have changed my life
It is hard dealing with pots everyday. Hang in there and it may get better with time. I have it and it is alot better after about 5 years of having it. I still get it every so often, especially if I dont have enough salt and water. And it is hard people thinking I was crazy and anxious and I knew something was going on, it took over 4 years to finally get diagnosed. That was the hardest part no one believing me and other people saying Oh my heart races at times too, they had no idea how I felt
In response to another comment further down, I thought I’d put in my two pence worth... Doctors can be excessively dismissive for a number of reasons... They strongly believe theirs is the only correct and appropriate opinion; they do not believe in working together with the patient (i.e. listening and applying); they reckon that bc of their education and years of practice, they know best/ can not be taught any further/ rest on their laurels; they reckon we can be cured - it’s not a broken wrist, mate - etc etc etc 🙄🙄 The worst, in my lowly opinion, is when the ego is so huge, they refuse to even remotely consider themselves wrong and that just maybe, they do not actually know everything. In the end, they can cause more anxiety and stress taking these stances. The best doctors listen to you. And you’ll actually see the compassion in their faces. Trust yourself. Seek out better when you have doubts that will not go away. And keep hold of the good ones. Btw, I am in my 50s and have had POTS all my life (so yes, a tad bitter and twisted 😝). Mine deteriorated into multiple other incurable conditions. I have lost count of how many specialists I’ve seen, so hopefully this explains my soapbox moment. Sending all you guys a ton of love❤️
I have been accused of lying many times because i look normal.i am sick from three years and if one of my sickness goes other comes.first digestive issues which made me lose 9 kilos and i grew taller at the time so my BMI went many points low.then i got the symptoms of POTS once and went to the hospital.just once severely but normally everyday to some extent.personally i won't suggest anyone to go to the hospital.i gurantee you will not get benefitted.try changing your lifestyle and avoid toxins,detoxify yourself,spend more time sleeping,excercise how much you can (i got sick when i stopped doing physical activities,but i am not sure).research and try to manage your symptoms without medications as they will harm you more than benefit you.i have depression and anxiety because i cant study properly like before when i was an above average student.now i am in 12 grade and my studies are going bad (partially due to the pandemic and other personal issues).if you are religious you can ask god to help you find a cure.
thank you so much for making this video. I'm slowly starting to understand my experiences with POTs. Still in the process of getting diagnosed. most like Dysautonomia. Thank you!
I was once an athlete who can run about 12 miles per hour and I could do 100 sit ups a day. But then one day I began to feel lightheaded, anxious, brain fog, and faint. Eventually I went to the doctor and I was diagnosed with P.O.T.S.
I was recently diagnosed with pots syndrome. I Know exactly what your going thru. I have three to four seizures a day. Im always nausea and feel like I'm going to faint. Alot of people think I'm healthy because I don't look sick. But it's hard to do regular daily activities. And I just had a baby so it's even harder. I hope you get better! :)
Are you taking any medicine? Zofran and femergen really help with nausea. For heart rate in taking Florinef and for blood pressure I'm taking atenolol. I also suffer from servers migraines (from pots ) in taking cyproheptadine
+Meagan Tucker Yes I'm on medicine. I'm taking meterprol for heart rate and salt tablets. and for seizures im taking keppra. but i dont think i have epilepsy i think its non epileptic seizures from the pots syndrome. do you ever get really bad pressure in your head?
+Amanda Schu Have you ever had a brain MRI? The fact that you have POTS, seizures and pressure in your head makes me wonder if you could possibly have something called a Chiari malformation or high CSF pressure which can sometimes be seen along with POTS. I know they are in my case.
I just found out I have POTS. I've been having symptoms for most of my life without a diagnosis. I''m trying to figure out how to live with it. Thank you for sharing.
It took a long time for my POTS to be diagnosed as well. How are your doctors managing your POTS? Popular medications for treating POTS include Atenolol or Propranolol, Ivabradine, Guanfacine or Clonidine, and Mestinon.
Molly, great job on the video! Great positive attitude! It's really hard to be dealing with something that few people, especially doctors, understand. A bit of advice for you and EVERYONE out there. It is not a good idea to post your personal information (phone number, email address, and especially your home address) on websites and forums. People can track down your address from your phone number. It can be reasonably safe to do so as a private message if it's to someone you can trust, but posting it openly can put you in a very dangerous situation. It's great that you are doing what you can to keep functioning, and also keeping up on your school work. So far as the helmet goes, why not do something to make it cool so that it doesn't have to be embarrassing? What is the lesser of two evils, a little embarrassment, or a lifetime of brain damage that affects your brain function and life? LOL
Its really sad they(doctors) are not any closer to really fixing ppl with POTS..with all the advances in Medical science it's hard to believe they don't... treating the symptoms and the actually cause is getting us nowhere...what happens when all the bandaid fixes don't work anymore, what's the next step
thank you so much for shearing this video, i am 38 an i have been sufering from low blood presure hypertenssshion orr what its called , when it started 4 5 yr ago my doc took my blood presure whole laying then siting an he then did it as soon as i stood up an my blood drop buy a substashal amount, he did not want to put me on med an he started doing other test to make sure witch was the turn table test witch the nurse did not want to follow thru with the injection as i was borderline with the resalt ,in the end yhey had to stop it as after injection my heart rate went out my chest nearly at 220 per min, i then moved town an lost my fantastic doc, as now not one doc has done the blood presuer lay sitting as an standing,, i pass out nearly every day i have 6 kids an i have giving up on test an seeing doc as i to feel like no one belives me at times an i can be walking nex min bang, i now ride a bike every were so i can wear a helmont an not look stuoid,, ive missed out on so much with my kids due to this an you have giving me the courige to go back an get my health back on track, but most of al im disletsic an i have trouble explaing things, an this video, is the perfect thing for me show my kids for a better understanding,, thank u so much, from shaun mcdonald god bless
I too have the dreaded POTS diagnosis. However, I am feeling very fortunate that I have warning before I faint. I usually have about fifteen seconds to get to the ground before I collapse. I hate to say it, but I feel bad that I have that function and you don't. I hope that things will get better for you. Quite obviously concussions are bad! Lolz.
I just got out of the Cardiac ICU after 8 days. I have this and it's nearly unbearable. My blood pressure has been 60/50 or 225/160. My heart rate is either in the 30s or 180s. They've shocked my heart when it's high. I just don't know how to live with this anymore.
I diagnosed with POTS 2 years ago but I am taking medicines, working out, drinking water and I am kind of OK now. My symptoms was, are, (and hopefully) will be not hard but if I forget to take one of my medicines or something I feel sick. Of course POTS it's about for ever but I can handle it, this is about me, most people can't
That is a huge problem for me, everyone thinks if I look okay and I'm not complaing about it then I am suddenly better. I have been seen at Stanford and when they did the tilt table test without my metoprol they had to stop the test after 10 seconds as my heart rate went up to 190 immediately. They said I had the worst symptoms they've seen as well. I came down with P.O.T.S my senior year of high school and had to get my GED as well. This conditon has caused me so many setabcks and held me back from a million things ive wanted to do. I used to be a baseball player and ride bmx, I can't even throw two pitches off of the mound now without getting my body so worked up. I feel like I am never going to be able to hold down a full time job because of this condition. For awhile it got better and then it returned to my symptoms being severe again.
i have EDS,Endometriosis,Fibromyalgia,IC and other illness just within the year ive been sweating sooo severly i dont leave my house. I have other symptoms like fainting,severe dizziness,headache,feels like a roller coaster. The sweating is the one thing that ruins my life. Im hot all the time unless laying down,I cant stand walk or do any activities without looking like im just out of the shower, My head is always soaked,im dripping wet and feel like early menopause doctors call me a medical mystery which doesnt help me. I get chest pain as well, All the chronic pain and symptoms yet the sweating is making me crazy, having to shower 4 times a day change clothes im always feeling heat inside me, I change clothes and while i change im sweating and ppl look at me like omg look at her!! I just stay home no social life at all.
You could try mestinon to stabilize ur blood pressure ,Ask ur doctor next time it could help the fluctuating blood pressure better than midodrine. And about those SSRI/SNRI they can worsen the fainting i remember when i was on ssri It was the only time i actually fainted, Good luck to your journey with this debilitating syndrome hope u get better!!
Mestinon (Pyridostigmine) was a miracle medication for my POTS, and it also fixed my gastroparesis! Yeah, those SSRI/SNRI antidepressants often make dysautonomia issues like POTS worse.
When I did the tilt table, I went from 80 bpm to 140 bpm, but they never put me on medication, they just told me to change my diet to eat more salt and drink way more water and never have caffeine again.
That's generally the initial advice. If that doesn't work, the patient needs to advocate for their healthcare and push to get their POTS treated. If a doctor doesn't want to do their job, the patient has the right to "fire" that doctor and "hire" a better doctor who will actually provide the proper services that the patient is paying to receive. Generally, a POTS specialist will try either Atenolol or Propranolol first. If that doesn't work or the patient reacts poorly to one of those, Ivabradine is usually tried next. Guanfacine or Clonidine are other options. If digestive motility issues are also present, Mestinon is often their choice since it can treat both POTS and digestive dysmotility by stimulating the vagus nerve and parasympathetic nervous system. Since each patient is unique and might respond differently to the various options, it sometimes takes time in order to find what works best for a specific patient. Hopefully you can find a doctor who can find what works best for you.
Wish i saw this video when i got diagnosed. I'm in the top 5% of severity. I cant go outside by myself, im in the hospital from not waking up from the pots seizures. Unconscious and with a heart rate of 175. It's pure misery. I wish I could go to college like my friends
I have pots too and i hope this tip works for you ( it works for me) the thing here is too much water and salt is the same as no water (dehydration) , i dont know if this happens to you , but the first time i try with lots of water and salt i had to go every 30 minutes to pee and loosing way moré water than drinking , and my symptoms never getting better, but with a right amount of liquids and salt it seems to get better , i get this idea from dr eric berg from TH-cam (the water myth) i repeat it.. I dont know if this is your case, and i dont know what should be the right amount of liquid for you, you should check your heart rate with diferent amounts of liquids to see how react , it really works for me to mantain an acceptable HR... And sorry for my bad english :$
I'm 37 and just got a diagnosis of pots, looking back I've had symptoms my whole life. This past year I started blacking out. They have been treating my symptoms and now I'm a bit bitter I've lost my life to this. My heart rate will jump up from 60 resting up to 178 standing. So many doctors I've spoke to never heard of it.
I can really relate to your struggle. For me my POTS is a secondary condition to Ehlers Danlos Syndrome, It made my ligaments and veins too loose so all the blood pools in my legs and my body has a hard time pumping the blood upward. When I was diagnosed with EDS my geneticist sent me to a cardiologist to check for heart abnormalities and we found the POTS. From laying down to standing my heart rate increased over 80 BPM. I had to lay completely flat and couldn't lift my head without fainting. Im currently on Betaxalol and Midodrine but really struggling with my blood pressure lately. Im the same as you, my doctors at some points said I technically didn't have a blood pressure. Ive had 10 surgeries over the last few years and the anesthesia and medications are just throwing me off more. Im also working on getting my GED (Im 20)
I first passed out when I was 13, I fainted often when doing the dishes when I locked my legs I chalked it up to locking my legs so I stopped and it still happened. I started to pass out every time my heart rate would puck up, that means every time I have sex I pass out, every time I get too hot, I pass out, I was just sitting down earlier and felt dizzy so I played on the floor
@@leubanks3921 the only side effect I have is that I’ll see something called phosphenes. When I close my eyes, I sometimes see a grid like pattern. It makes me dizzy occasionally but I’ll deal with that over my POTS symptoms any day!
Have you ever tried compression socks? I know they might be kind of weird, but they help so much when I'm having really bad days. They make cute ones, too!
Hey! Thank you for posting this! My heart rate jumped 50 beats as well. I'm almost 25 and have had this undiagnosed until last week! What kind of salt tablets do you use? I have a very sensitive stomach so I'm trying to find the easiest ones to digest. I hope you are doing well managing your condition. :)
If you don’t mind me asking, you many not know, but how long do your symptoms have to last to be considered POTS? When I lie down or sit my average heart rate is around 90 and if I have been lying down for 20 minutes when I stand up my heart rate will go up to 130-160. This only lasts for up to 30 seconds and my heart rate will go down to about 110. I’m 14 years old, so basically my question is do my symptoms last long enough to be POTS? Or could it be something else?
I went to the doctor today. He said that I have POTS. My symptoms were dizziness when standing, blood pressure lowering, and chest pain. I had chest pain when I hiccup or when I eat something too cold.
Wow this is so similar to me yet my doctors keep misdiagnosing me with common fainting illnesses ( e.g. postural hypotention, vvs ) Evan with anxiety which I do not have . keep fighting PS what makes a bad POTS day for you
I also was prescribed thigh length compression stocking and I decided to also add arm compression sleeves to help increase my quality of life. I also take 10mg Nadalol twice daily and on a high sodium diet with 3-5 L of water and electrolytes daily. I also use the mobile shopping carts. any chance I get.
have you improved? I'm a 10 year combat vet from iraq, beard and tattoos and love riding harleys, reason I bring this up, when I strolled in to the ER, they looked at me like I was crazy, I had a heart rate of 140 and almost passed out, my BP was high walking 200 yards from the hospital to my car, talking 130 over 108 but right when I would sit down it would be 120 over 70, I am sorry Youre going thru this, my journey has just started with this.
Have you tried visiting an endocrinologist and have your vasopressin levels checked?? Many times, low levels of anti diuretic hormone is the problem and desmopressin is prescribed to control this. I have POTS and it's from low vasopressin levels..
Wow this is great and is so me. I have a lot of the vertigo part and the feeling of faint. But never fainted and lots of nausea like you have described. I have nausea from Gastroparesis and now I have nausea from having pots. I get motion sick now while riding in a car.
I have POTS and gastroparesis as well. Have they tried you on Mestinon (Pyridostigmine) to treat both issues with a single medication? It's an emerging repurposed treatment for both, due to its positive effects on the vagus nerve and parasympathetic nervous system.
I have had POTS for 2 years now and I just recently got diagnosed. I have fainted and fallen, and forgot stuff when it had just happened and I didn't know how long each spell lasted. It still happens occasionally and I have to take salt supplement tablets and water every day. It sucks because no one really gets it, and it is really hard to explain. For me, it feels like the world is blackening and I can hear what people are saying around me, but I don't understand it. It just sounds like jumbled words and their tones get soft. The doctor did the standing and sitting test with me, too, and my blood pressure was pretty messed up. It took three tries to get my blood pressure and bpm right. I didn't tell anyone until this year and it was happening 2-3 times a day. After the first year of it happening, it went away. For a few months, I hadn't had a spell and I thought it was just something normal. Then it came back worse. I'm in my freshman year of high school right now and on the 17th of
+Megan Howard don't be scared, they will take care of you and will hopefully listen to you. I have the same thing going on, and it sucks, but the cardiologist is the right person to go to because they can help with your heart problems and pots disease
I was diagnosed with POTS today and I cant even play rugby in February.... i've had the symptoms for five months now and of course I talked myself into thinking i had a brain tumor. haha... but i did come up with a way to make me laugh today just a joke and please don't take this the wrong way but since POTS is in your brain I guess you could call us Pot heads... HAHA.... im sorry... Anyways. if anybody sees this I was diagnosed today and yet i already feel like im not alone.. thank you for this video. :)
"i looked normal, so people thought that I was normal."
Literally my life with P.O.T.S.
So hard, been living with it for 6+ years.
Thank you for sharing your story.
It is so nice to know that I do not go through this alone.
Every single word that you have said in this video, is what I have gone through. The tests, mayo clinic, not going to school, midodrine, antidepressants, salt, excersise, water, and all of your other words.
#thestruggleisreal
I've been suffering with POTS since 2006. I made a video on the topic myself of anyone is looking for more first-hand accounts on living with this illness th-cam.com/video/cxNRrTSx37U/w-d-xo.html
Was gonna comment the same quote.same here.
Praying for you all ....
I was diagnosed with POTS a little over a month ago and I have been sick for about 3 and a half years now. I broke down in tears watching this video because I found someone who actually knows and understands what I am going through. I have had to stop going to school partway through this year and tried home bound. I was only able to finish one class and after my first semester I had to completely drop out of school. My health was getting worse and worse and I had horrible brain fog (I still do). I am starting to get some of my energy back because I have started to do some exercise and I am doing my best to drink as much water as I can. I am also taking a lot of pills. I started taking salt tablets a couple of weeks ago but I had to stop because they made me extremely nauseous. Other than my energy levels getting better, I don't think my health has improved all that much. I loved hearing your story. I don't know if anyone else personally that has gone through this and I appreciated this
What helped u d most? Pls help me i have pots too
@@morningwithgracie7870 Each person is a bit different, so it sometimes takes time to find which medication or medications work best for you. The top POTS medications are Atenolol or Propranolol, Ivabradine, Guanfacine or Clonidine, and Mestinon. Mestinon has worked best for me, since it also treats digestive motility issues like gastroparesis, and it's now undergoing trials to treat ME/CFS and exercise intolerance. I also take a small dose of Guanfacine before bed, which treats hyperadrenergic POTS at its source by signaling the body not to dump so much norepinephrine and adrenaline into circulation.
I can't even explain how much this helps me. I'm 13 years old, and the doctors think I have POTS. I am getting tested in the next few days. We have been searching for a diagnoses for over a year and a half, and it has caused me to be really anxious and depressed. And, it really sucks. A lot of doctors have told me I am crazy, which I am absolutely not. It's really hard, I have lost friends because I can't do things, and people don't understand me. It really is hard, and it feels good someone feels me. My fatigue is super severe, My mom can't leave my side at all times because she's worried I will fall. I've been to school four days and they unenrolled me from missing so much. Thank you so much, it really means a lot you made this video! I don't know why we are the ones having to go through this (frankly, anybody!), but I know we can with God by our sides. God bless you!
I am 18 and i have POTS for 2 or 3 years but intensity changes over time.it is not too severe but it is bad.
how did you manage to run girl? i cant even manage to run a metre to catch up with my toddler without fainting. Hope you are going okay these days.
New POTSie here - thank you for this video. You are so brave for sharing your story and helping others understand. Hopefully by now you have found a treatment that works for you. Stay strong!
It must have been so painful and frustrating that no-one really took you serious. Otherwise there would have been a diagnosis much earlier. So much precious time lost. But you're still standing. You are strong, incredible brave in my opinion. In a way I'm glad that you finally got recognition. Thank you for sharing...you are an amazing human being and it seems you're surrounded by amazing people as well. You deserve it.
I've had pots for 4 and a half months and I have never seen a video that describes pots better. I started crying because I know how you feel so much oh my god thank you for this video. I don't have as server as you but it's hard to deal with this in high school thank you again for this video.
POTS and chronic illness sucks! I hate it. Hope you are getting better and better.
I've been suffering with POTS since 2006. Unfortunately, my insurance does not cover any cardiologists that specialize in POTS or Dysautonomia. I want more than anything to be able to go to the Mayo clinic and see a doctor who understands what's going on in my body, but I cant afford it and have to settle for doctors who have never even heard of POTS and some have litterally called lazy. I have an uncle you constantly belittle me and call me a loser and a failure because I have not graduated college yet and cannot drive (apparently they rather have me faint at the wheel and hurt myself and others in a collision??) and say I pretend to be sick as a "copout". All I really have is my mom, dad, and my dads wife (she has a heart condition as well and has been nothing but understanding ever since first meeting her). The one person I confided in the most was my grandmother who passed away in 2018. She was bedridden every day, like me, and was always happy to talk to me no matter how awful she must have felt physically (she had COPD and a Brain Tumor, yet was brave and selfless enough to keep it from me to avoid stressing me out more). I've lost all my friends over the years and I've become fearful of even getting close to people because most people dont understand what I go through and get frustrated when I have to constantly cancel plans. Despite that, nothing hurts more than, how my aunt and uncle treat me. At 16, before I was diagnosed, we took a trip to Disneyland. I was terrified of fainting on the Pirates of the Carribean ride due to the drop and the beginning and politely decided to wait outside the exit whole everyone went. My gem of an aunt decided to stay behind as well and yell at me for 40 minutes straight about inconviencing my family for no reason and causing drama. She told me "grow up or I would end up alone and have nobody" I eventually rushed to a bathroom. There was a line and I ended up sobbing as I waited to escape to a stall. I never felt so useless and pathetic in my life. She still tries to email text me every few months with these insults. I've blocked her more time than I can count. At this point, isolating myself is more comforting that seeking support.
I recently made a video on the topic myself of anyone is looking for more first-hand accounts on living with this illness th-cam.com/video/cxNRrTSx37U/w-d-xo.html
My number is 406-600-9300 if anyone would like to contact me!!!
Molly, I feel for you and wish nothing but you getting over POTS soon. I have a 15 year old daughter who has very gradually been increasing the symptoms associated with POTS. She saw a pediatric rheumatologist a year ago and started taking beta blockers. She did not tolerate these well so she just quit taking them. She tried a different dosage and she is much worse. She is going to see a cardiologist next. She is an overachiever in academics and sports, and has always been conscious about eating healthy and being active (also has ADHD). Please take the best care of yourself, you seem like such a lovely young lady with a bright future! You taught me a lot about the effects of POTS in a teenage girl. Thank you so much and I hope today is a good day for you!
Sorry she is going through that. When beta blockers don't work or cause bad reactions, POTS specialists will usually try Ivabradine next. Did they try that with her yet? Guanfacine, Clonidine, and Mestinon are other options for POTS medications. Sometimes it takes time and a doctor who is up to date on the latest treatment options for POTS in order to work with a patient to figure out what works best for the unique individual.
Hi Molly my name is Samantha. I just got Diagnosed with POTS I'm 24 years old. I was misdiagnosed for the last 13 years of my life. it's be a long road and it's been a tough one. it's nice to see that I'm not alone. if you have time and a chance I'd like to talk a little more about things? it's been a tough 13 years. So seeing everyone on here is amazing! thanks for posting and talking about it!
Thank you for sharing your story, I have to go to Mayo Clinic soon ,a doctor thought this could be what I have ..I appreciate you taking the time to share , this can help so many others that are undiagnosed, I will keep you in prayer for total healing In your body..
thanks for the expression of just how bad it is and how doctors made you feel crazy very nice
I for the most part hate the modern medical system.
You have my sympathy. I am 70 and suffer from metabolic orthostatic hypotension. I take some of the drugs you do along with droxidopa. My life is very difficult with this condition. I have hope, however, and I hope you and I both get better.
I've had it for 12 years and I'm 26 years old and life has been full of ups and downs some days better than others
Thanks for this video Molly. My daughter was told this is probably what she has just this morning. She needs to go for the tilt test to confirm it. She has been using a wheelchair for the last few months because she never faints while sitting. If she didn't it would be happening half a dozen times a day at least. It certainly gives us a little piece of mind and she feels more secure now she has the chair as like you, she was hurting herself when she passed out. Might help your parents nerves a little bit too when they are not with you, I know has for me as she wants her independence and isn't around me 24/7. Good luck to you and I hope your progress continues!
Thank you for this video!! I have POTS too and just hearing your story resonated with me so much cause I feel like it is so similar to mine! I faint all the time with literally no warning and it is so annoying. It's really hard to deal with something like this and I'm glad that at least now I know there are other people who are like me and I'm not alone. :) I find that wearing compression stockings, drinking HEAPS of water, having lots of salt, and exercising helps me the most.
Macy how r u today? Do u have medications? Or water n salt only?
Great video to explain POTS! Hearing you speak about it, reminds me of how I felt back in high school... Keep Fighting!
I've been battling with it for years and years! My symptoms were about the same as you when I was in high school and finally sent to the Mayo Clinic to be diagnosed at 17. I managed to make it through college (although it took me 6 years due to POTS). And I'm now 27 and working full time! Believe me, at 17 I never thought it was possible!
Living with POTS has it's ups and downs.... I've had nearly a year where I was almost symptom free, and I've been completely bed-bound for nearly 6 months! Recently, I'm finally getting back on track with trying to get back in shape... and trying to get my life back.
I just started making some videos to track my fitness progress, and ultimately want to spread awareness about the link between POTS & EDS & CSF leak.... I believe I finally figured out what was really going on all along and it wasn't just POTS. Hoping to connect with other potsies and help each-other out.
Kirstin what help u d most?
I can relate to that. POTS was the first diagnosis I received, which was part of my overall hypermobile type Ehlers Danlos syndrome (hEDS) symptoms and comorbidities. My hEDS causes a lot of other issues as well, one of which is digestive motility issues. Thankfully Mestinon (Pyridostigmine) is an emerging repurposed treatment option to treat both POTS and digestive motility issues. It's also undergoing trials to treat CFS and exercise intolerance.
Hoping that your doctors are up to date on the latest treatment options for EDS and POTS, and have been able to figure out what works best for you!
Thanks for the wonderful video, you are such a beautiful and well spoken young lady, I hope you are feeling better.
hey from New Zealand :) I was just diagnosed with PoTS yesterday! I have low BP too although BP is not usually associated to PoTS from what I read. I have been slowly getting worse for the last few years but it DRs keep telling me it was anxiety and I needed counselling which I went along with but was persistent that something else is going on then I started passing and getting frequent episodes this year, some days I couldn't get off my floor. It wasn't until I googled reasons for fainting that I found out about PoTS I then went to my Doctor and said I think I have PoTS and was referred to cardio as he was concerned and I was correct. I currently have an event monitor for the week and I am going to try manage it with LOOOOTS of water, salt and exercise before I go down the med route as I am also a mum so If I have side effects I don't want to put my daughter in danger(like fainting). I really hope you are on the right track with your current changes, as I can only understand a little of what you go through from my own experience and it really sucks!! Also thank you for your video :)
+Stephanie Rogers I am also a Nursing student so fainting makes my job a little sucky haha
I’m from NZ too!! Who did you go to?
There are dogs that can alert you before you faint. I'm on the waiting list myself and it sounds like you could benefit as well. They are not for everyone, but it's worth considering
Hi Molly! Just watched this whilst researching PoTS. I am so sure that this is what I have along with chronic migraine. I just got an oxymetre to keep an eye on my heart rate and measure it from lying to sitting to standing. Next step is getting the diagnosis and tilt table test. I hope that you are doing ok, I loved your honesty in the video. I have been so unwell these recent years and it's been a nightmare trying to get people to understand. I feel your pain. xx
I have been researching pots for my daughter that may have it and saw a video that mentioned migraines as one of the symptoms
I'm so sorry. I was diagnosed last year but it sounds like your symptoms are much worse. I know it can feel very lonely at times, especially when you appear healthy on the outside. Keep up the good work and I wish you all the best!! xxo
hey Molly, I Might not be diagnosed with POTS but I can tell you that there´s a God who heals everything who also has waited so long to have you in his hands, there´s hope Molly i know you´ll be healed by god´s grace, no matter what doctor said and what your parents said about it girl, YOU ARE LOVED AND BLESSED MOLLY
Brandon Kiyoshi Verduzco Reyes You do know that we live in a sin filled world and are born in sin. Even when we come to Christ, we will still suffer. However, He also uses that suffering to draw.us closer to Him. I've been praying for healing. My faith is strong and I pray, fast, read my Word and I'm not doubting God. I'm just extremely tired of going through this and it's a challenge of faith when you're faced with a chronic health condition. I've been suffering for many years and you're trying to provide hope by telling her to not think about it or acknowledge it. How can He heal when you don't acknowledge that you're sick. Jesus didn't come to heal the healthy or the so religious who don't need saving, but He came to the sick and those who knew that they were sinners. He did heal them, but there were also those whom He left to their infirmities so that they may always trust and rely on Him and not grow prideful. I said all of that to say this, Don't Tell someone that they're not sick because they'll never receive their healing and you don't know what God is working in them for that person to pour out later on into someone else. Look at Paul, Timothy and Peter.
@@Whisper8819 we suffer based on our sins.
I have similar symptoms but i am assured doctors can't help.just can pray to god to show a way and he definitely will.
@@SN-qg6jh But have you looked at Job. He didn’t sin and he still suffered. So that is actually not an accurate statement. However we can also suffer even when doing good and God just sees fit for us to go through suffering because He knows we can handle it and make us stronger.
He healed me last year and He brought to my attention what it was that was causing it. I didn’t want to let my will go regarding a matter and I finally came to terms with it and I received my healing.
@@Whisper8819 yes i know about job.its not just him if you think about it,it is every baby.they don't sin.but i am a muslim and i believe we all lived somewhere before we came to earth,it wasn't just adam and eve.but we were all born through adam and eve.and also we must believe that god is just he only makes you suffer for your sins and we don't believe adam and eve or jesus suffered because of our sins.every soul is responsible for what it did,not what others did.this life itself is a suffering.good people suffer the most as their sins are being forgiven through suffering because they regret/repent all the time what they have done wrong.
Edit:by repentance i mean if you repent you suffer in this world and if you don't you suffer in hell for the same sins but with more intensity.
❤ Thank you for sharing. You’re an inspiration.
Oh WOW! So sorry. My sister has had P.O.T.S a long time and I have just been diagnosed. It's no where near your condition. I had no clue or understand much about it even though my sister has it. I'm researching a lot. Yours is so severe:( I hope it gets a better. I cant imagine living like that. I do understand not having a diagnosis and people don't think or believe you're sick and you are just lazy. Been there :( God bless you.
Thank you for making this video. It was very courageous and you are very courageous.... My daughter has been through so much in the past 2 years. They have diagnosed her with chronic migraines and there has been so much medicine so many starts and stops. She has been fainting, shaking uncontrollably, sweaty then hot then cold. She is impossible to wake up in the mornings. The last time we were at her pediatricians office her blood pressure was high....they took it 3x and all different. They did not seem concerned but I was. 3 neurologists, now a team of docs at the Washington Pain Center and she keeps going down hill. I am not sure it is POTS but she has most of the symptoms. I found one doc that will see her in St. Louis. That specializes in POTS please share any questions that you think I should ask the doc? Your parents must be amazing because it is so painful to watch your child suffer.... My prayers are with you.
Those symptoms sound like the hyperadrenergic type of POTS, where the body's autonomic nervous system overreacts and dumps too much norepinephrine and adrenaline into circulation. Have they tried her on nightly low dose Catapres (Clonidine) to treat the tachycardia, sweats, and as a migraine preventative?
Thanks Molly, my wife went nearly a decade before getting diagnosed with POTS. It has been a real eye opener to see just how uninformed GPs and Specialists can be. No less than 8 doctors gave rubbish diagnosis. She was clued in to a Dysautonomia specialist near us in NJ, Dr Depace. He has written medical text books on it. Without that one break we would have never known. Sadly, she also has other complicating conditions that make life not worth living, in her words. She did improve with exercise until one of the other conditions caused her to stop. I can say when she got compression stockings it did help even though she hates wearing them. I didn't hear you mention them, but I might have missed it.
I don't like the feel of compression stockings, either. (I have size 18 feet, so they don't really fit.) Instead I get the compression calf sleeves like marathon runners wear, and they have been super helpful for my POTS (and shin splints, too). I especially like the spandex calf sleeves that 2xU makes.
I know I'm a bit late to the party, but this video was absolutely amazing! I have tentatively been diagnosed w/POTS, and to see another vibrant young woman going through it has given me confidence I lack in allowing myself to deal with my disease. Not that I want you to be going through it, I'm just thankful you were willing to share your story. My issue is my heart rate, not my blood pressure thankfully, so I've never actually passed out, I just feel like I'm going to. So I am on beta blockers and after about a week those really started working. My cardiologist is holding off on a tilt table test because in my journey for diagnosis, I had blood work done and one of the tests showed I have Sjogren's syndrome antibodies, and in early stages of Sjogren's it can present as POTS. So he wants me to see a rheumatologist to get confirmation of Sjogren's and possible treatment before he orders a tilt test. But back to your video, I am beyond thankful because it normalized everything I have been going through. My cardiologist wants me to start exercising again, and I'd love to. Exercise was my biggest hobby; I used to be a person who exercised 4-5x/week for 2hrs each time. But once I starting exhibiting POTS symptoms I ceased exercising completely. I have so much anxiety about exercising and causing myself to pass out that I'd just rather not push myself until I've been symptom free for a while. How did you find the courage to start getting your life back? How are you doing on your POTS jjourney now?
Sorry you have Sjorgren's and the other health issues. I have POTS from having hypermobile type Ehlers Danlos syndrome.
Have they tried you on Mestinon (Pyridostigmine) to treat your POTS, dry mouth and eyes from Sjogren's, and to help reduce your fatigue and exercise intolerance? It's an emerging repurposed medication to treat POTS and Sjogren's, and is currently in clinical trials to treat ME/CFS.
hey, I've recently been diagnosed with POTS and I really loved watching this video. it's been a long journey of misdiagnosis and doctor referrals. is there any way I can contact you? you have such an amazing attitude and such a comforting aura!
You can contact me at 406-600-9300 or my email is Molly.nason@icloud.com :)
My son was just diagnosed and he has the severe case also. He bottomed out on the tilt table test. They diagnosed him with vasovagal syncope. For years they thought he was faking. I kept pushing the matter with his condition because I wasn't happy with that. I felt like it was still something that was missing. So, I told the Doctors and it was alot that my son's pulse rate goes up just when he talks and his BP and pulse goes even higher when he gets up. He has headaches/migraines 24 hrs a day 7 days a week. No one would listen even when, the test showed what I was saying was true. It was right in front of them. To make a long story short God opened their eyes and allowed them to finally listen. They diagnosed him with pots. It is a daily struggle for years, but he got his G.e.d. :-) God bless you
Have you ever considered getting a service dog to help you? It would be able to help you get up after fainting and you would always have it there to assist you when you faint. It could also retrieve your meds if you are unable to get up and could pick up things so that you wouldn't have to bend over when dizzy.
+Nia Carter my instagram is @natures.apprentice if you would like to contact me
I agree, my psychiatric service dog is now training to aid me with my pots symptoms, i could not leave bed if it wasnt for her
You are amazing!!! My daughter was just diagnosed with this, you are a true inspiration, thank you for sharing your story:)
I've recently been diagnosed and this video is very helpful. Stay strong
This sounds exactly like my symptoms. This has been happening to me a lot lately and I'm almost done with my senior year. I want to get this figured out so bad. I've been to countless doctors and all they ask me every time I tell them my symptoms is if I'm pregnant. I'm switching to mayo from a different Doctor later this month. I am seeing a specialist and have a tilt table test and more bloodwork the day after my graduation. I live 20 minutes from mayo clinic in Rochester and I'm super glad to be able to live so close. Hopefully I can figure this all out. Thank you for making this video I related to you so much! Everything you said I completely understood especially about people's support and criticism. This helped me a lot!
You are so brave, I really do appreciate you posting this video. Male, just got diagnosed with POTS, blood pressure stays normal with me but heart rate jumps by 45.
Thank you for making this video. I have recently been diagnosed with P.O.T.S. My doctor says that my case is also really bad and I told him how long it has been going on and he said I may have had it since I was a child and I know how you feel because nobody believed me until recently.
Thank you so much for this video! It was so comforting! Would you consider making any more? X
Thank you sooooo much this helped me a lot im currently going through test this answered all of my questions
Hope your doing better I know how you feel.I have the same thing.Good luck stay safe God bless you.Paul
This video was amazing to watch! Describes my life well. On top of pots I always have a chiari malformation on the right side of my cerebellum which causes me to get massive headaches on top of the issues of pots. I have had my ups and downs and this video has really spoken a lot to me. God bless and continue to remain strong, I know we haven't been dealt the best hand in life but we have to make do with what we have. #staysalty #werunamarathonjustbystanding
neurologicwellnessinstitute.com/dr-david-traster/. Dr Traster fixed my POTS after a severe concussion. I don’t have POTS anymore. Do you need surgery for your chiari malformation? I know somebody that did. Sometimes functional neurology can help with chiari. Anyway, he fixed my POTS. I need special forms of B12 and folate. All the best in your healing.
Sorry you have Chiari malformation. That can cause dysautonomia issues such as POTS, by putting pressure on the vagus nerve. Are you able to get surgery to alleviate the Chiari issues? Is your Chiari caused by a collagen based disorder, such as one of the 13 different types of Ehlers Danlos syndrome?
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. 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.
Thank you for making this video and sharing your experiences for people like me.
I can relate to your story a lot, and my tilt table test also revealed my heart rate crashing after an initial spike, leading to bradycardic pauses of my heart. Avoiding that initial heart rate spike with a small nightly dose of Clonidine or Guanfacine has helped to prevent those crashes and has reduced my fainting. I'm also taking Mestinon during the day, which is a newer medication to treat POTS and fatigue.
Calf compression sleeves and physical therapy to put on more leg muscle mass has also helped quite a bit. Hoping your doctors are staying up to date on the latest treatment options, and can find what works best for you. It sometimes takes time to try various options in order to figure out what works best for you as a unique individual.
Thank you for sharing this! It means a lot to me to know that I am not alone. : )
Thank you for your video Molly my daughter also has Pots and ED syndrome and had to give up school I know what you are going through and I live in England and met Dr Grubb USA at a talk and I had 10 minutes chat with this great man and my daughter was so ill she could not attend, Now she is in a wheelchair and has Pots seizures but they now are not so bad as she takes life easy and it is one seizure a month but she hates them and they can appear out of the blue just like your fainting. But she has her family and lovely boyfriend who also takes care of her. The hardest part of Pots is not being believed but her seizures once or twice showed up at a good time in front of the doctors who then believed. Well take care.
hi Ann, Im sorry to hear your daughter is so ill. I have seizures after I faint and they've been put down to possible Reflex Anoxic Seizures. does your daughter have a diagnosis for hers? x
I hope your daughter is doing a bit better now! I also have EDS and POTS, my seizures were spinal related, but I know how hard it is to deal with it all. I also had to leave school.
ann try ashwagandha it might help
Thank you Beth my other daughter had Reflex Anoxic Seizures she grew out of this at 6 years old and my husband started fainting too and it turned out he needed a pacemaker but an pulse Oximeter would have been great for all three of them. Her seizures are rare and they are Pots siezures. My daughter is in a wheelchair and we have accepted it and she also has accepted it. We have all moved on and are getting on with life the seizure is now once a month so some improvement she likes doing her party trick with the Pulse Oximeter people believe her now.
Thank you we will look up up this on Google.
I have pots too, I feel ya sister! Stay strong!
hey i am in the long process of being diagnosed with pots, although it is pretty much confirmed just waiting for the tilt test, 4-month wait! so painful. i found this so comforting to watch, knowing that there are other people out there living with pots. I belive i have had Pots nearly my whole life, you don't hear of many 9yr old fainting for no reason. My biggest struggle with the illness- besides the heart stuff is the drinking so much water and exercising, this has never been my strong suit, any suggestions to remind and motivate myself would be amazing!!!
After doing these try and think of the benefits of how it can make you feel better. I have the same issue when it comes to motivating myself. But I know that exercise can greatly help me feel better and I always try to remind myself as to what happens when I don't do it
I also did the tilt table but the results were inconclusive....figures, just pots trying to be sneaky again. Luckily I was able to meet with world renown pot specialist doctors at children's hospital Wisconsin 2 years ago. Man they have changed my life
in the same situation right now! how did the test go?
Look into DNRS program it has helped me greatly.
It is hard dealing with pots everyday. Hang in there and it may get better with time. I have it and it is alot better after about 5 years of having it. I still get it every so often, especially if I dont have enough salt and water. And it is hard people thinking I was crazy and anxious and I knew something was going on, it took over 4 years to finally get diagnosed. That was the hardest part no one believing me and other people saying Oh my heart races at times too, they had no idea how I felt
Good video chick, I have PoTS too and understand what you're going through - keep being strong :)
In response to another comment further down, I thought I’d put in my two pence worth...
Doctors can be excessively dismissive for a number of reasons...
They strongly believe theirs is the only correct and appropriate opinion; they do not believe in working together with the patient (i.e. listening and applying); they reckon that bc of their education and years of practice, they know best/ can not be taught any further/ rest on their laurels; they reckon we can be cured - it’s not a broken wrist, mate - etc etc etc 🙄🙄 The worst, in my lowly opinion, is when the ego is so huge, they refuse to even remotely consider themselves wrong and that just maybe, they do not actually know everything. In the end, they can cause more anxiety and stress taking these stances.
The best doctors listen to you. And you’ll actually see the compassion in their faces. Trust yourself. Seek out better when you have doubts that will not go away. And keep hold of the good ones.
Btw, I am in my 50s and have had POTS all my life (so yes, a tad bitter and twisted 😝). Mine deteriorated into multiple other incurable conditions. I have lost count of how many specialists I’ve seen, so hopefully this explains my soapbox moment.
Sending all you guys a ton of love❤️
I have been accused of lying many times because i look normal.i am sick from three years and if one of my sickness goes other comes.first digestive issues which made me lose 9 kilos and i grew taller at the time so my BMI went many points low.then i got the symptoms of POTS once and went to the hospital.just once severely but normally everyday to some extent.personally i won't suggest anyone to go to the hospital.i gurantee you will not get benefitted.try changing your lifestyle and avoid toxins,detoxify yourself,spend more time sleeping,excercise how much you can (i got sick when i stopped doing physical activities,but i am not sure).research and try to manage your symptoms without medications as they will harm you more than benefit you.i have depression and anxiety because i cant study properly like before when i was an above average student.now i am in 12 grade and my studies are going bad (partially due to the pandemic and other personal issues).if you are religious you can ask god to help you find a cure.
thank you so much for making this video. I'm slowly starting to understand my experiences with POTs. Still in the process of getting diagnosed. most like Dysautonomia.
Thank you!
I was once an athlete who can run about 12 miles per hour and I could do 100 sit ups a day. But then one day I began to feel lightheaded, anxious, brain fog, and faint. Eventually I went to the doctor and I was diagnosed with P.O.T.S.
I was recently diagnosed with pots syndrome. I Know exactly what your going thru. I have three to four seizures a day. Im always nausea and feel like I'm going to faint. Alot of people think I'm healthy because I don't look sick. But it's hard to do regular daily activities. And I just had a baby so it's even harder. I hope you get better! :)
Are you taking any medicine? Zofran and femergen really help with nausea. For heart rate in taking Florinef and for blood pressure I'm taking atenolol. I also suffer from servers migraines (from pots ) in taking cyproheptadine
+Meagan Tucker Yes I'm on medicine. I'm taking meterprol for heart rate and salt tablets. and for seizures im taking keppra. but i dont think i have epilepsy i think its non epileptic seizures from the pots syndrome. do you ever get really bad pressure in your head?
+Amanda Schu Have you ever had a brain MRI? The fact that you have POTS, seizures and pressure in your head makes me wonder if you could possibly have something called a Chiari malformation or high CSF pressure which can sometimes be seen along with POTS. I know they are in my case.
Poor kid, how can some one possibly vote dislike on the video. What is wrong with people?
I just found out I have POTS. I've been having symptoms for most of my life without a diagnosis. I''m trying to figure out how to live with it. Thank you for sharing.
It took a long time for my POTS to be diagnosed as well. How are your doctors managing your POTS? Popular medications for treating POTS include Atenolol or Propranolol, Ivabradine, Guanfacine or Clonidine, and Mestinon.
Molly, great job on the video! Great positive attitude! It's really hard to be dealing with something that few people, especially doctors, understand. A bit of advice for you and EVERYONE out there. It is not a good idea to post your personal information (phone number, email address, and especially your home address) on websites and forums. People can track down your address from your phone number. It can be reasonably safe to do so as a private message if it's to someone you can trust, but posting it openly can put you in a very dangerous situation.
It's great that you are doing what you can to keep functioning, and also keeping up on your school work. So far as the helmet goes, why not do something to make it cool so that it doesn't have to be embarrassing? What is the lesser of two evils, a little embarrassment, or a lifetime of brain damage that affects your brain function and life? LOL
Its really sad they(doctors) are not any closer to really fixing ppl with POTS..with all the advances in Medical science it's hard to believe they don't... treating the symptoms and the actually cause is getting us nowhere...what happens when all the bandaid fixes don't work anymore, what's the next step
Yano I never thought someone else could note how I feel.
thank you so much for shearing this video, i am 38 an i have been sufering from low blood presure hypertenssshion orr what its called , when it started 4 5 yr ago my doc took my blood presure whole laying then siting an he then did it as soon as i stood up an my blood drop buy a substashal amount, he did not want to put me on med an he started doing other test to make sure witch was the turn table test witch the nurse did not want to follow thru with the injection as i was borderline with the resalt ,in the end yhey had to stop it as after injection my heart rate went out my chest nearly at 220 per min, i then moved town an lost my fantastic doc, as now not one doc has done the blood presuer lay sitting as an standing,, i pass out nearly every day i have 6 kids an i have giving up on test an seeing doc as i to feel like no one belives me at times an i can be walking nex min bang, i now ride a bike every were so i can wear a helmont an not look stuoid,, ive missed out on so much with my kids due to this an you have giving me the courige to go back an get my health back on track, but most of al im disletsic an i have trouble explaing things, an this video, is the perfect thing for me show my kids for a better understanding,, thank u so much, from shaun mcdonald god bless
I too have the dreaded POTS diagnosis. However, I am feeling very fortunate that I have warning before I faint. I usually have about fifteen seconds to get to the ground before I collapse. I hate to say it, but I feel bad that I have that function and you don't. I hope that things will get better for you. Quite obviously concussions are bad! Lolz.
I just got out of the Cardiac ICU after 8 days. I have this and it's nearly unbearable. My blood pressure has been 60/50 or 225/160. My heart rate is either in the 30s or 180s. They've shocked my heart when it's high. I just don't know how to live with this anymore.
I diagnosed with POTS 2 years ago but I am taking medicines, working out, drinking water and I am kind of OK now. My symptoms was, are, (and hopefully) will be not hard but if I forget to take one of my medicines or something I feel sick. Of course POTS it's about for ever but I can handle it, this is about me, most people can't
What medicines dd you take?
What medicines dd you take? Pls help i have also pots.
That is a huge problem for me, everyone thinks if I look okay and I'm not complaing about it then I am suddenly better. I have been seen at Stanford and when they did the tilt table test without my metoprol they had to stop the test after 10 seconds as my heart rate went up to 190 immediately. They said I had the worst symptoms they've seen as well. I came down with P.O.T.S my senior year of high school and had to get my GED as well. This conditon has caused me so many setabcks and held me back from a million things ive wanted to do. I used to be a baseball player and ride bmx, I can't even throw two pitches off of the mound now without getting my body so worked up. I feel like I am never going to be able to hold down a full time job because of this condition. For awhile it got better and then it returned to my symptoms being severe again.
im sorry honey i know how you feel
i have EDS,Endometriosis,Fibromyalgia,IC and other illness just within the year ive been sweating sooo severly i dont leave my house. I have other symptoms like fainting,severe dizziness,headache,feels like a roller coaster. The sweating is the one thing that ruins my life. Im hot all the time unless laying down,I cant stand walk or do any activities without looking like im just out of the shower, My head is always soaked,im dripping wet and feel like early menopause doctors call me a medical mystery which doesnt help me. I get chest pain as well, All the chronic pain and symptoms yet the sweating is making me crazy, having to shower 4 times a day change clothes im always feeling heat inside me, I change clothes and while i change im sweating and ppl look at me like omg look at her!! I just stay home no social life at all.
You could try mestinon to stabilize ur blood pressure ,Ask ur doctor next time it could help the fluctuating blood pressure better than midodrine.
And about those SSRI/SNRI they can worsen the fainting i remember when i was on ssri It was the only time i actually fainted, Good luck to your journey with this debilitating syndrome hope u get better!!
Mestinon (Pyridostigmine) was a miracle medication for my POTS, and it also fixed my gastroparesis!
Yeah, those SSRI/SNRI antidepressants often make dysautonomia issues like POTS worse.
When I did the tilt table, I went from 80 bpm to 140 bpm, but they never put me on medication, they just told me to change my diet to eat more salt and drink way more water and never have caffeine again.
That's generally the initial advice. If that doesn't work, the patient needs to advocate for their healthcare and push to get their POTS treated. If a doctor doesn't want to do their job, the patient has the right to "fire" that doctor and "hire" a better doctor who will actually provide the proper services that the patient is paying to receive.
Generally, a POTS specialist will try either Atenolol or Propranolol first. If that doesn't work or the patient reacts poorly to one of those, Ivabradine is usually tried next. Guanfacine or Clonidine are other options. If digestive motility issues are also present, Mestinon is often their choice since it can treat both POTS and digestive dysmotility by stimulating the vagus nerve and parasympathetic nervous system. Since each patient is unique and might respond differently to the various options, it sometimes takes time in order to find what works best for a specific patient. Hopefully you can find a doctor who can find what works best for you.
Wish i saw this video when i got diagnosed. I'm in the top 5% of severity. I cant go outside by myself, im in the hospital from not waking up from the pots seizures. Unconscious and with a heart rate of 175. It's pure misery. I wish I could go to college like my friends
Hey how are you these days ?
I have pots too and i hope this tip works for you ( it works for me) the thing here is too much water and salt is the same as no water (dehydration) , i dont know if this happens to you , but the first time i try with lots of water and salt i had to go every 30 minutes to pee and loosing way moré water than drinking , and my symptoms never getting better, but with a right amount of liquids and salt it seems to get better , i get this idea from dr eric berg from TH-cam (the water myth) i repeat it.. I dont know if this is your case, and i dont know what should be the right amount of liquid for you, you should check your heart rate with diferent amounts of liquids to see how react , it really works for me to mantain an acceptable HR... And sorry for my bad english :$
Mike pls help me i have also pots what is the correct measurement of salt n water for u to be ok? What type of salt dd u take?
the shaking screen is really messing with my head... i almost threw up :-(
thank you for sharing tho!
Hey thanks for sharing. Hope you're feeling better. I haven't been diagnosed but seem to have similar symptoms :(
This happened to me when I drink this pre work out never again will I drink caffeine...
I'm 37 and just got a diagnosis of pots, looking back I've had symptoms my whole life. This past year I started blacking out. They have been treating my symptoms and now I'm a bit bitter I've lost my life to this.
My heart rate will jump up from 60 resting up to 178 standing. So many doctors I've spoke to never heard of it.
Tjis is what I'm going through
I can really relate to your struggle. For me my POTS is a secondary condition to Ehlers Danlos Syndrome, It made my ligaments and veins too loose so all the blood pools in my legs and my body has a hard time pumping the blood upward. When I was diagnosed with EDS my geneticist sent me to a cardiologist to check for heart abnormalities and we found the POTS. From laying down to standing my heart rate increased over 80 BPM. I had to lay completely flat and couldn't lift my head without fainting. Im currently on Betaxalol and Midodrine but really struggling with my blood pressure lately. Im the same as you, my doctors at some points said I technically didn't have a blood pressure. Ive had 10 surgeries over the last few years and the anesthesia and medications are just throwing me off more. Im also working on getting my GED (Im 20)
Mine is too - I have type 3 . What type do u have ?
I first passed out when I was 13, I fainted often when doing the dishes when I locked my legs I chalked it up to locking my legs so I stopped and it still happened. I started to pass out every time my heart rate would puck up, that means every time I have sex I pass out, every time I get too hot, I pass out, I was just sitting down earlier and felt dizzy so I played on the floor
I am just now seeing your comment! I would like to know if your exercise along with water and salt end up controlling your symptoms! Keep me posted.
+Soorena Sasani please dm me @thewayofmk, I am going through something VERY SIMILIAR
@@Soorena6 how are u today?
Corlanor has saved my life!
Is Corlanor for heart rate only?
@@leubanks3921 yes. It has no effect on my blood pressure.
Did you experience Any side effects?
@@leubanks3921 the only side effect I have is that I’ll see something called phosphenes. When I close my eyes, I sometimes see a grid like pattern. It makes me dizzy occasionally but I’ll deal with that over my POTS symptoms any day!
I also had to go to a cardiologist and had to do multiple tests and everyone thought I was lying.
Same
Zofran helps with my nausea.
Have u also been tested for MCAS?
What is that babe ?
@@sophiasmith6111 Mast Cell Activation Syndrome. It often accompanies Ehlers Danlos syndrome (EDS) and POTS.
Dulcimerist thank you for commenting :) I have been diagnosed with MCAS & EDS - this comment was 5 years ago ! Xx
Have you ever tried compression socks? I know they might be kind of weird, but they help so much when I'm having really bad days. They make cute ones, too!
Stay strong!!!
Stay strong 💖💖💖💖💖💖💖
Hey! Thank you for posting this! My heart rate jumped 50 beats as well. I'm almost 25 and have had this undiagnosed until last week! What kind of salt tablets do you use? I have a very sensitive stomach so I'm trying to find the easiest ones to digest. I hope you are doing well managing your condition. :)
thanks for your video I have POTS as well as other chronic illnesses and just started a vlog as too
chronicles of a chronically ill girl I
If you don’t mind me asking, you many not know, but how long do your symptoms have to last to be considered POTS? When I lie down or sit my average heart rate is around 90 and if I have been lying down for 20 minutes when I stand up my heart rate will go up to 130-160. This only lasts for up to 30 seconds and my heart rate will go down to about 110. I’m 14 years old, so basically my question is do my symptoms last long enough to be POTS? Or could it be something else?
You're so pretty
I went to the doctor today. He said that I have POTS. My symptoms were dizziness when standing, blood pressure lowering, and chest pain. I had chest pain when I hiccup or when I eat something too cold.
Wow this is so similar to me yet my doctors keep misdiagnosing me with common fainting illnesses ( e.g. postural hypotention, vvs ) Evan with anxiety which I do not have . keep fighting PS what makes a bad POTS day for you
I have symptoms of POTS,POHT and intercranial hypotension.it sucks.
Last year I was 28 years old and I was diagnosed with POTS/dysautonomia
I also was prescribed thigh length compression stocking and I decided to also add arm compression sleeves to help increase my quality of life. I also take 10mg Nadalol twice daily and on a high sodium diet with 3-5 L of water and electrolytes daily. I also use the mobile shopping carts. any chance I get.
have you improved? I'm a 10 year combat vet from iraq, beard and tattoos and love riding harleys, reason I bring this up, when I strolled in to the ER, they looked at me like I was crazy, I had a heart rate of 140 and almost passed out, my BP was high walking 200 yards from the hospital to my car, talking 130 over 108 but right when I would sit down it would be 120 over 70, I am sorry Youre going thru this, my journey has just started with this.
I have pots syndrome too I hate it so much. ☹️
Have you tried visiting an endocrinologist and have your vasopressin levels checked?? Many times, low levels of anti diuretic hormone is the problem and desmopressin is prescribed to control this. I have POTS and it's from low vasopressin levels..
Hi, I was wondering how you are doing now? Have you found anything that has helped you? Great video btw :)
i understand. i have POTS too. its a very hard sickness to live with
Wow this is great and is so me. I have a lot of the vertigo part and the feeling of faint. But never fainted and lots of nausea like you have described. I have nausea from Gastroparesis and now I have nausea from having pots. I get motion sick now while riding in a car.
I have POTS and gastroparesis as well. Have they tried you on Mestinon (Pyridostigmine) to treat both issues with a single medication? It's an emerging repurposed treatment for both, due to its positive effects on the vagus nerve and parasympathetic nervous system.
I have had POTS for 2 years now and I just recently got diagnosed. I have fainted and fallen, and forgot stuff when it had just happened and I didn't know how long each spell lasted. It still happens occasionally and I have to take salt supplement tablets and water every day. It sucks because no one really gets it, and it is really hard to explain. For me, it feels like the world is blackening and I can hear what people are saying around me, but I don't understand it. It just sounds like jumbled words and their tones get soft. The doctor did the standing and sitting test with me, too, and my blood pressure was pretty messed up. It took three tries to get my blood pressure and bpm right. I didn't tell anyone until this year and it was happening 2-3 times a day. After the first year of it happening, it went away. For a few months, I hadn't had a spell and I thought it was just something normal. Then it came back worse. I'm in my freshman year of high school right now and on the 17th of
January, I am going to a child cardiology specialist. I'm happy and scared at the same time...
because they said it might be a bigger underlying issue with my heart
+Megan Howard don't be scared, they will take care of you and will hopefully listen to you. I have the same thing going on, and it sucks, but the cardiologist is the right person to go to because they can help with your heart problems and pots disease
I was diagnosed with POTS today and I cant even play rugby in February.... i've had the symptoms for five months now and of course I talked myself into thinking i had a brain tumor. haha... but i did come up with a way to make me laugh today just a joke and please don't take this the wrong way but since POTS is in your brain I guess you could call us Pot heads... HAHA.... im sorry... Anyways. if anybody sees this I was diagnosed today and yet i already feel like im not alone.. thank you for this video. :)