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Oh shi...... have lived with this since childhood. Had one really bad fall and I learned to really squeeze my legs to get blood upwards when I stand. I also have Ehler Danlos. We've had to do so much just to survive.

I am 22 years old and was diagnosed with POTS at 15 and now at 22 I still have to go to doctors and have seizure like symptoms. It has put a strain on me any those involved in my life. Mainly to my boyfriend who I live with.

I started with tachycardia about 2 years ago, while standing. Still working full time in healthcare. At first I would get a bit dizzy upon bending down and then rising. Due to Covid stress I left a year before retirement. Then my tachycardia would go up to nearly 200bpm! I had no stress, I just don’t know what sparked it. It got so bad I was crawling around on the floor. I have to put a barstool in the kitchen if I do any kind of cooking, so I can sit down. I have passed out in the shower, in our living room, in my bedroom at 3 am and I don’t even know why I was out of bed in the dark! My husband has learned what to do immediately to bring me back up. Stretch me out, and raise my feet up. I usually am gasping out loud for air when I wake up. Sometimes I’m out for a minute or two which freaks my husband out, as he’s afraid I’ll have a seizure from lack of oxygen. He’s definitely going to get CPR certified, as he feels helpless watching me go down. I usually always say his name as I’m falling…lol. I don’t give him enough heads up to catch me going down…😂 I’m starting to knock over furniture and get super bruised up when I faint. I take my largest Pyrenees with me to walk, b/c if I pass out he’s not going to let anyone come near me unless they know his name. The employees at Tractor Supply know me well enough that they keep a folding chair at the front near the register so I can catch my breath from walking into the store b/f I go shopping. I normally end up sitting on my large bags of cat food on the flat bottomed cart to keep me from passing out on the floor. This disorder is very ruthless and messes up your life! I was fine 4 months ago and now I got tickets for my favorite band in August. My husband is renting a wheelchair now as we will be in a concert venue area without chairs…I know I can’t stand for more than 10 minutes or I’ll drop…❤

I was just diagnosed with pots this month. Started medication this week. Seeing videos like this helps make me feel like I’m not alone. I never heard of pots before, so it’s a whole new world for me.

Are you in pain from neuropathy constantly and joint pain?.

I'm a male with Pots. Although I don't have full blown pots i still deal with high heart rate, dizziness and sweating. I got diagnosed i think a few months of having pots. On top of everything i have Panic Disorder. So yea..

🌻🌹

This is happening now with me 😢

"If it didn't go away, what does that mean for my life?" I feel that everyday.

You explained it so perfectly, I have POTs and it had gone undiagnosed for so many years and the doctors I’ve visited told my parents over and over again that “she’s just looking for attention “ or “she’s just over worked” and “she’s just depressed” it was hard for me to explain what I was experiencing when there was so many people around me telling my parents that I was faking it. My mom was the one that believed me and I was just recently diagnosed after so many years.

Im 24 years old and have been struggling with every single symptom of POTS/Dysautonomia for several years and haven't been diagnosed yet .. my doctors don't believe me and neither does my family...

i don't have POTS, but i do have a mental health condition that requires powerful meds that are timed out, and i cannot take and then even drive a car or be out and about. i wear out easily mentally and physically so that if i stay up late or do something intense one day, i need to have rest days planned. it is always a balancing act to remain stable. i can only work part time and so i am pretty poor and dealing with all that comes with that. i have just gotten used to a low key life, and am grateful for having had my party days and all nighters in the past. i feel for you being so young when you had your life changing injury, and being so limited as soon as you were starting out on your independent life. i think at the end of the day finding the balance between justified negative emotions and gratitude for what we still have is so important in managing chronic illness. thank you for sharing your story.

I have hyperadrenergic POTS so my heart races, I overheat and I sweat profusely, get nauseous, my digestion goes crazy, I get dizzy and disoriented, become aphasic, and it's a race to do what I need to do before I pass out. I also have chronic pain due to fibromyalgia, arthritis, migraine and SI dysfunction. Most difficult thing is that (aside from the profuse sweating) I look perfectly healthy but have all this chaos happening inside my body all the time. It's so hard to explain, even to myself sometimes.

I started crying while watching the video, not because i have pots but because i felt that you touched my soul and i so badly wanted to give you a hug and i couldn't.

Yeah this thing really brings down quality of life smh😔.

She’s doing better than I am. 🤷🏼‍♀️

the run analogy is so true

I was detected with POTS when I was 11 years old and I felt like I thought I had a cure, I investigated but not, almost every day I felt like I didn't feel like it, I was just lying in my bed, and leaving the house for me is still a challenge, I can't sleep well. Some days I don't sleep and it was because I felt my palpitations and they wouldn't let me sleep, and the episodes were very frequent and people don't understand what I feel, they just say it's just about raising my legs and that's it, "but no, I wanted to sleep well but I couldn't, I hope people understand what it means to have POTS.

❤❤❤

I’ve had POTS most of my life, at one point I was on tube feeding and IV hydration. I had to cope with poorly treated POTS in college and no one understood it.

Did the neurologist do a MRI or what did they do to test you? I’m 99.9% I have this I also had a serious concussion In hockey (multiple actually) I’ve seen so many doctors I hope ur life slows down for you to take ur time to just live 🙂

Girl, I just want to hug you! This is more powerful than you realize. Please don't stop making these amazing, touching videos. The chronic illness community needs your skill. Fellow POTSie here. We are not alone. I am on that bathroom floor crying with you. (((HUGS!!!)))

I’m afraid to go to the wrong hospital and having to pay them hundreds of dollars just to be told to be bedridden. I’ve been having problems this week and been missing work, my only source of income. You’re doing the best you can and I’m happy that seeing you in this video gives me hope for diagnosis. Edit: also, you’re wearing my favorite sweater! Target

I haven’t been diagnosed yet but pots runs in my family and the people who do have it r 99% sure I have it too and it has progressed so much in the last month. I went from just having daily migraines to monthly flare ups to daily flare ups all in the span of weeks. I started highschool this year and the first few weeks I couldn’t make it through a whole week and then it got to the point where I couldn’t make it through the day and I was leaving an hour after I got there and on the days I made it through I spent most of the day at the nurse and as soon as I got home I was glued to my bed until the next morning and I had to switch to online school bc of it. I feel so alone bc I don’t see my friends anymore and ik they’re still my friends but it’s just different and I wouldn’t wish this on my worst enemy bc it sucks. I thought if I left school I would feel better bc I’m not using as much energy but I’m still sick. my body still doesn’t work right and now my mental health is getting bad bc I’m always alone with my thoughts and I always managed my mental health by distracting myself from my thoughts and now I can’t and I worked hard to get better and then my physical health got bad and now my mental health is bad bc my physical health is bad so it’s a never ending cycle. when she said “if I push through my body will make me listen” I rlly felt that bc I was pushing through every day at school and I just kept thinking “u can go one more class, just one more and then see how u feel” and it just made things worse. Sometimes I wonder if I took more breaks and listened earlier then maybe I wouldn’t be as sick as i am now.

Feeling the crash and needing 1-2 days to recover… ugh. And that feeling of convincing yourself you’re fine and then a flare up will be triggered when you least expect it. All the stages of grief. Thank you for making this! I want to share it with friends/family so that they can understand what it’s like because it’s just so hard to explain.

I think my Son has pots but he has not been diagnosed. The cardiologist could not find anything . The only test he failed was the treadmill . The Dr put him on beta blockers . This has helped him , but his issue is still a mystery . The Dr mentioned Pots but just as a fore thought . But didn’t check him for Pots . !! My Son was also diagnosed with ulcerative Colitis! He is 44 .He seems like he has given up , he missed seeing new Drs , as he canceled due to bad storm . He has not rescheduled!! I read only 10% faint of pots patients. But when he first gets up , it’s a struggle . He also can’t sleep ? It’s so hard to see your Child struggling with health ! But I can’t make him keep appointments 😢he is a grown man . He had to quit his job as a electrician and he can’t drive . His life has done a big turn . He doesn’t want to see his friends as he is weak . He is taking shots for colitis but it is failing to put him in remission . I wish he would get diagnosed . They are putting it under the category of heart disease ! Even though they found nothing 😮

I just got diagnosed a week ago after years of suffering. I’m sitting on the floor getting ready for work because standing was just too hard.

I brush my teeth the same way due to POTS! Thank you for sharing your story - I wasn’t aware of the dysautonomia aspect of it, but that explains my episodes being accompanied by either chills or sweating, and feeling the need to vomit or have a bowel movement. My heart rate gets over 200 which is scary so I certainly feel your pain. Hope you’ve been well!

Great job🎉 I have the same condition. It was so terrible for me.. I wish healthy life for everyone who has this symptoms. POTS+anxiety,Panic disorder are so difficult for me. If someone know what to do pls say me...

Well done - I don’t have POTS - but have other disabilities that has my body telling me when to rest (every day). Thank you for sharing. 💚

Thank you for sharing

Thank you for an accurate description. In 2004 I became sick with many of the symptoms you described. My heart rate was erratic. My blood pressure was critical. They were so severe that I needed a wheelchair to get around. I had every test imaginable before I was diagnosed. It was an extremely rare condition then. My first neurologist could not figure out what was wrong. A new Harvard-trained neurologist move to town. He was aware of the condition and was able to stabilize me some with medication, but I still had no quality of life. If my condition had not been so severe, I probably would never have been diagnosed. I remember the day my 5 year old asked me if I was going to die. I told her, 'not if I have anything to say about it!' I am a born again Christian and I don't believe God puts illness on anyone. With faith in God, we prayed and I continued to believe God for complete healing. On September 29, 2005, I received a miraculous, instantaneous healing. To the glory of God, I live in normal life. No medications, no regiments, and no restrictions! My neurologist was very confused. There is healing in the Name of Jesus! You can believe what you want. I have scientific, documented proof.

Diet has saved my life. Celtic salt, electrolytes, forcing myself to do hiit workout, no refined sugars, no gluten and on no meds. My faith is making me well! December my heart rate was 168 bpm. I started taking hawthornberry and that regulated my blood pressure. Daily workouts are honestly life saving for me. Praying for healing to anyone who reads this in Jesus name 🙏 ❤

My oldest daughter has Elhers Danlos and POTTS and my youngest has symptoms of POTTS. During their trials I have tried to involve myself in education and help that I can offer but unfortunately this is a cross they must bear 😔 alone. I wish there was more information about these autoimmune diseases. I hope and pray they find a way to control or cure them. I love my daughters and want to help so badly.😢

Please look into CCI. Since you said your POTS started after a traumatic injury to the head, there could be a chance that you have upper cervical instability due to damaged ligaments near the atlas and axis bones (first two bones of the spine that connect to the brain). POTS can be a symptom of CCI because of compressed nerves. If you TH-cam search “Chris centeno pots” there is a video that explains it.

You should look into upper cervical instability/issues.

vaccine does POTS too .

I have this and it's is the most uncomfortable illness to have. Mine is caused by having a couple tick diseases and mold undiagnosed for a long time. This medical system needs to start paying more attention to these nervous system problems that affect autonomic organs. I have a peripheral nueropothy I was born with but in my lifetime these illnesses happened and caused the peripheral nueropothies to worsen and this medical systems drs are still saying my peripheral nueropothy is getting worse but without paying attention to the illnesses causing it to get worse and the other nuerological illnesses I have because of the tick diseases and environmental illnesses. This medical profession needs to read books on how to be humane to patients and not be ocd and abide by fictitious guidelines.

I’m sorry you live like this. But remember God gave this to you for a reason.

Excellent communication of the reality of living daily with a limiting health condition like POTS! It says it all!

well done, and thank you. your analogy about going for a run was perfect. it took me many decades to be dx’d. the hardest part of this, besides feeling awful and missing out on so much of life, is that pots is invisible. that means you don’t get the offer of a subway seat, you’re attacked for parking in a handicapped spot, doctors just see “woman,” so attribute everything to nerves. doctors need to do their homework, so that they can recognize pots, and everyone needs to believe people. to anyone out there who thinks they have pots, please find a pots specialist (who will most likely be a cardiologist or a neurologist). for those of us who will recover and for those of us who won’t, there are things that can make our lives easier (e.g., gentle recumbent exercise, compression socks, meds, finding good support, increased salt and water intake, fixing concomitant illnesses, such as thyroid disease, vitamin/mineral deficiencies, etc). keep reading about pots and watching on youtube, but be smart and don’t fall for stupid “remedies.” good luck to all of you out there!

Thank you for this video. I’ve had it since I was a child at least. I was in my mid 30’s before I was diagnosed and had a name for it. And the last few years especially have been a real struggle with it since having cancer on top of it and all the chemo, radiation and surgeries that have accompanied it. The reason I love this video is not necessarily because I learned anything new. It was very informative. I’m just no stranger to the pots life myself! It’s because I see myself in you. The kitchen floor sitting. The racing pulse oximeter. The sadness. The desperation for other’s to see you aren’t faking it. It’s just nice to see you aren’t alone sometimes. I wish you continued improvement with your health!

You did a great job on this. The symptoms can vary through body systems and from day to day. You really did a good job of making it understandable for people that don’t get it. I’ll add my story for those that might benefit from my experience: I was extremely healthy with a professional career. I broke my neck and healed, and later had some infections. After that I had many symptoms,sometimes many at once. In the beginning, I recognized the fatigue and sleep problems, and palpitations…. but didn’t realize what was really happening with my heart rate. There were other thing like tingling in my face, rashes, temperature regulation issues and so on. I had an abnormal EKG and finally was sent to a cardiologist. By that time I researched and was sure it was POTS, or at least it explained all my symptoms. I asked the cardiologist for a tilt table test but I was the one to bring up POTS, not him. He ruled out problems from my heart and said it must be a problem with the electrical signals causing my tachycardia. The cardiologist did the tilt table test because I asked for it, and said it was “negative.” He gave me a beta blocker and sent me on my way. So I thought I figured it out only to end up back at square one. Eventually they diagnosed Fibromyalgia. The only medication that helped with the horrible fatigue was Concerta or Adderall. That also came out of my own efforts and request, not the doctor. It’s so hard to endure doctor after doctor looking at you like you are a drug seeker, a hypochondriac, lazy, or a complainer with so many symptoms. When you are already facing debilitating symptoms, problems at work and not keeping up at home, the doctor is your only hope and way too often they can’t or don’t bother trying to see the diagnosis process through. When it’s not any of the common conditions, they seem to give up and see it as your problem, or even see you as the problem. I suffered for 9 more years, lost my house, my job, and my social life. All I can do is lay down. If I have a good day, it means I walked into the grocery store and maybe cooked dinner, then I’m down for two days because of that one productive day. After I lost my job, I had time to devote to finding the right doctor and right diagnosis. I requested all my records in preparation. When I looked over the copy of the tilt table test, I was floored. My heart rate more than doubled when tilted upright. It continued to rise from 59 to 128, and did not come down until the tilt was over. That is POTS, but the doctor said it was negative! Well it was negative because on the test they said they were looking for “vasodepressor syncope” which is a totally different condition with opposite symptoms (dropping heart rate, lower blood pressure). I am still dealing with being furious that the doctor brushed me off and I’ve suffered and deteriorated all this time. I finally have an appointment with a good doctor who specializes in POTS and I’m waiting for that date and hopefully an accurate diagnosis. I want to recommend some things for anyone in that place of limbo: 1. Don’t give up. Don’t let the doctors dismiss you. 2. I ordered a heart rate monitor (polar beats) with a strap around the chest; it connects to an app through Bluetooth. You can find them cheaper on sites like eBay or Mercari (I paid $25 w/shipping). Wearing it helps me to see for myself that my heart rate is going up every time I stand. It also helps me realize when my heart rate is getting too high and I need to rest. It just helps to know your body better and helps the diagnosis. 3. Electrophysiologist! I should have make this #1. Understand that even Cardiologists may not know anything about POTS, so they won’t know to test for it, or in my case tested for something opposite, and when the test should have led to a POTS diagnosis, he said it was normal. I searched and found a POTS clinic two hours away and then I couldn’t get in as they weren’t taking patients. This is what I learned. You need to look for a Cardiologist that is an Electrophysiologist. If my cardiologist would have referred me once he got to the point of tachycardia for unknown reasons, or if he had educated himself on POTS, then my quality of life may have improved long ago. 4. If you suffer from fatigue, talk to your doctor about Concerta or Adderall. Adderall sounds scary but it has been the most life-changing Rx for me so far, but I am still waiting to see a specialist too. I do know that it is an RX used for POTS. It can increase the heart rate some but for me it’s worth it. 5. If you have sleep trouble, Seroquel is one that doesn’t (at least for me) have the crazy side affects of Ambien. 6. It’s good to know about pacing yourself too. Like she said in the video, you can crash when you get over exerted. I’ll do a single chore and rest. Sometimes after rest I can do more, often I can’t. Everyone has different limits and it’s good to get in touch with your body and know what your limits are. I really want a CPET test which supposedly can help determine your limits and if the exercise intolerance is related more to breathing or cardio). 7. There is another video that is helpful and it’s called, “Unrest.” I’ll say it’s not really enjoyable to watch but it does have a lot of good information and if you have POTs you will get through the slow parts and identify with the symptoms. 8. Get a copy of all of your records and organize them. I read about this recommendation from a center that helps diagnose when there are complex conditions. They said you’re going to get more out of your visits if you have you history and records, and also organize the information well (don’t just bring 1000 pages). 9. I found a doctor but keep in mind that there are televisions put there, so that may be an option to consider if you are having trouble finding a specialist or a doctor that can handle complexity. 10. I also recommend watching videos from Caring Medical. They discuss POTS and how it can relate to the cervical spine. I’ve had a spine injury but you can have spine issues without an injury that can be contributing to POTS. Either way, if you have complex POTS like symptoms, you will find his videos extremely helpful. I’ve watched all of them and found it very informative. He talks a lot about the treatment he specializes in, but for me, similar treatments are available near me, and the information about how the body systems work together helps to understand and communicate with your own doctor. 11. Don’t blame yourself. Hopefully you have a support system. Understand that mental health is part of it, and it doesn’t mean you’re crazy. Like she says in the video, the autonomic system is involved, and you functional problems are already tough. Make sure you take care of your mental health. Stress will make your overall health worse, especially with POTS. For me, I got to a point where I decided I have to focus on my health because everything else is dependent on that. I stopped the cycle of doctors brushing me off and I researched for the right doctors and got organized. It’s helping. 12. If you work, you have a lot of decisions to make. Know what your rights are as far as both FMLA and ADA. Since POTS is an invisible disability, it carries its own set of problems, like people assume you have a choice to come in that day or come in on time, and you simply don’t. If you have flares or just a severe case or don’t yet have optimal treatment, then you could run into problems. Those decisions and be complex as far as how much to share or not share. It depends on you and your employer. In the very least know your rights, try to communicate up front before it becomes a problem so you can head off the all to common assumption that you are making an excuse or just being irresponsible. Know that your employer is required to work with you on accommodations like schedule accommodations, or work from home, etc. There are a lot of options and many people and employers don’t realize how it’s intended to be interactive and even include placement in another position if they can’t accommodate in the current position (but you qualify for another open position). I also recommend documenting everything so if you do run into an uncooperative employer, you may have recourse if they discriminate against you. Unfortunately it is very common. Good Luck!

I'm really glad I came across this video. I feel like I'll just send this to anyone who asks me about it because it's too difficult to explain and no one understands it.

I live pots. Thank you for your honest and open video. I felt validated, seeing someone live like myself. Validated that what I feel and experience is real and not in my head. And then I’m instantly saddened to watch you, a young person experiencing pots and having to deal with this almost visually invisible disorder. Thanks again from Sydney Australia 🇦🇺

I don't have pots but I do live with a chronic neurological condition and after my 6th brain surgery I felt something similar . My intracranial pressure was so high due to brain swelling that every time I stand up I got dizzy, lost my vision and saw everything black for a few minutes , I fell a lot and the dizziness was always there . I used to cry a lot because I felt that will never go away . I am so sorry you have to deal with such a horrible thing 24/7 all day every day 🙏🏻

Thank you for this video

This is so beautiful. Beautifully shot, narrated, and conveyed. The hope that this brings while also acknowledging pain is perfection. "she looked the same, but I couldn't recognize her eyes" In this with you and the beauty that lies deep within the process.

😢😢😢😢😢😢

How are you now ? Which meds are you taking? 😢😢😢