This is My Life With POTS
ฝัง
- เผยแพร่เมื่อ 30 ก.ย. 2021
- This video shows a patient's journey with POTS (Postural Orthostatic Tachycardia Syndrome). From the struggles of finding a diagnosis to grieving the reality of chronic illness. Highlighting the daily challenges of fainting and symptom management. It's a look into my life with POTS.
Filmed and edited by Jordyn Dunseath -
TH-cam: / jordyndunseath
Instagram: @jordyndunseath
DISCLAIMER:
The views and opinions expressed in this video are my own, they do not reflect the views of any institution.
The information in this video is based off my personal experience as a patient and is not considered medical advice. Content from this video is not meant to treat or diagnose any medical condition. Please consult your healthcare provider.
"If it didn't go away, what does that mean for my life?" I feel that everyday.
same
That scene where you were sitting on the floor to sweep really hit home. I actually started crying seeing that. It’s all too real. I have moments exactly like that. Sometimes I have to crawl around my house because being upright and walking is just too difficult for me. I get so frustrated, angry, and sad that this is my life when years ago I was perfectly healthy. Thank you for making this video to advocate for yourself and those of us living with this invisible disability
That was the part for me. I crawl around my apartment all the time because I don’t want to stand up. I can’t believe this is my life now.
😞
@@jiggagirl0073 😞
I am diagnosed with FND but feel this is what’s also crippling me. I crawl a lot and slide on the floor. It’s safer to be lower or I can pass out, drop fall or have a seizure
Me too. :(. We try SO hard but we are perceived as “lazy”. It’s horrible.
“If I push through…my body will make me listen” is the realest thing and exactly how I’ve put it too. This was really affirming and soul-huggy as someone also with POTS (and other related things) and also makes me feel like I have a resource to show folks and help them more viscerally understand what this is for me. Esp those scenes of lying slouched and propped up against whatever surface is nearest - that’s *exactly* how those moments look and feel, and not everyone in my life sees them. It’s nice to feel like I have an easier way to show them. Thanks for this video.
You explain it so well. My daughter tried every medication from the top POTS doctor’s, at Northshore in Chicago and one in Toledo. She’s doing this without medication which is worse, no relief. As a mother It’s heartbreaking. No one gets it, they think she’s faking her sickness, she feels like no one cares about her. She’s right, no one ever reaches out to her, it’s a lonely, difficult life. for some POTSies. Thanks for sharing your story.
God Bless You
You should look up momming with migraine on youtube - she did a POTScare clinic and says its helped tremendously
Not sure if she has tried it or not, but Concerta helped be tremendously with fatigue. It actually kind of stabilized my functioning for about a year, until I got hurt and lost functioning again. I recommend at least trying it. Concerta is a stimulant. Right now there is a shortage so Adderall is an alternative. It does raise the heart rate a little, but for me i was already taking a beta blocker and the benefit outweighed that. Another thing, I would encourage her to watch videos from Caring Medical (Dr. Hauser). I came across him and it really inspired me to get on a path to finding the right doctor. While he talks a lot about the procedure he specializes in, the information about how these conditions work is valuable. Mainly, for your daughter, if medication isn’t helping (or even if it is), he talks about how many people have POTS and similar conditions (often together) that are actually caused by cervical spine/vagus nerve issues from injury, poor posture, or genetics…and if you correct that, you can improve the POTS. The guy is legitimate. I actually talked to my local chiropractor and he said he worked on a case with that Dr, and the patient (with a similar story to this one) had improvement.
Another thing I’m about to try is a whole genome dna test. You get more information than Ancestry or 23 and me (which is only a percentage, not the whole genome). Improved technology has brought the price way down in last couple years and it’s accurate. I’m about to do mine for $400 (for a clinical/medical grade test). To me, when you have complex health issues, that aren’t well understood, then it’s worth $400 to have that information. It’s information that you will have forever, so if they identify markers for certain conditions, then you already have your whole genome. So if it helps pinpoint an underlying or contributing condition, either now or in the future, then it could help to treat that root cause/improve her quality of life. Plus, the awesome part is, now that whole genome tests are more affordable, we can expect there will be advances in identifying rare diseases. Since it’s cheaper and faster for researchers too, then they get more data for less cost. I hope she gets better. I understand completely where she is at.
I do too. Im 60 years of age. Awful illness
tVNS helped me a lot with pots
Wow! As a fellow POTS patient I think you have described it and explained it so well. I am definitely going to save this share with loved ones ❤️ thank you for raising awareness for POTS!
I am honored that you would choose my video to share with family and friends. I hope it's helpful!
@@mirandap.3774u feel low energy sym please answer
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!
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.
This was so well done. POTS is a tough battle, but knowing fellow spoonies are fighting with me helps so much. The mental and emotional impact is really underrepresented, especially for young people. I am hopeful that more research and awareness will come from the prevalence of long-haul COVID. This condition has taken so much from us. Definitely relate to the planning and avoiding overexertion. Stay strong and salty fellow spoonies!!
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.
Same! I just stopped even trying to explain what this feels like. People don't get how debilitating it is
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'm new to this disease, and am still trying to adjust to this. It's so hard.
I live with POTS (as well as EDS and MCAS. Hashimoto’s as an added bonus cause, why not.🙄) This video is the absolute best description of living with POTS that I’ve come across.
I’ve seen a lot of doctors in the past two decades. I mean…A LOT. I was finally diagnosed 3 yrs ago. What’s really frustrating is, most people who are chronically ill don’t only have one condition they’re living with…as I mentioned. Most specialists only focus on one condition rather than seeing the whole body as one big puzzle where everything is connected. The advice they give that may help one specific condition can often times exacerbate another. This makes it extra difficult to find solid answers for healing and relief.
Thank you for bringing awareness in a very honest and thorough way.❤
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.
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
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 was diagnosed about two years after I displayed symptoms. It was during college, unfortunately I couldn't finish my degree. After so many ER trips I had to drop out. I can work part time now, I was on bed rest for over a year before I could. I still struggle with symptoms but push through for my family. I've had numerous deficiencies since then too, iron to where I needed a transfusion, third one in my life, vitamin d now on a prescription, and vitamin B12 to where I had to give myself injections. It's a struggle for sure, thank you for your story❤️
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.
So people who have POTS and arent christian are out of luck?
@@Mirkwood1998 That is not what I said. The medical system had no help to offer me. You could call it a spontaneous reversal if you want. All I know is, I was healed in an instant. I credit God.
Yep. The sweeping while on the floor got me. In tears. I’m fighting right along with you.
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.
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!
This made me cry- i feel so seen. Thank you
Got diagnosed 6 years ago, have lived within strict limits since, this helps me at least have a decent chance of doing a few things ! Massive fatigue problems are very frustrating. I had lyme disease some years before PoTs, that was my trigger/cause. Having interests and not over doing it helps me , bad days are awful, but I look forward to the better days 🙂 Thanks for sharing, there's a fair number of sufferers and it helps to know you're not alone.
So well done thank you. I got hit with Pots at 28, totally relate to the isolation and grief aspect you describe. I’m one that doesn’t faint with POTS but I deal with many other symptoms. I’m stable now as well but it’s hard for sure. It took me six years to get diagnosed. I also brush my teeth the same way leaning on the counter like that.
what are your other symptoms please? chest pains? dizziness? head pressure? fuzzy arms?
@@nfrar3d77 for POTS my main symptoms was a chronically high heart rate (over 150 BPM) and then while standing could get up to 200 BPM. I also experienced palpitations with these. I had a lot of hand shakiness, almost like I had 200 cups of coffee with a very uncomfortable feeling of adrenaline all the time. The other two main symptoms I had were debilitating fatigue and brain fog.
Omg i have post concussion at the moment at 18 yrs old. I have had to drop out of school and couldn't get out of bed for 8 months due to similar symptoms but minus the fainting. Its been nine months today. I have not seen any friends since then so i feel very isolated and so alone... This month it has improved a little, being able to walk a bit round the house and stuff. But feels like a warm hug hearing someone went through something similar although still different but similar. Thank you for your story.
Insomnia too?
Have you had a scan standing upright? It could be that the discs closest to the head has moved and therefore the vegusnerv is causing POTS.
It is called chiari and or intercraniell instability and can be fixed🌸.
I have had all of these symptoms without the fainting but had a concussion also and I am gonna make sure I get that upright scan to make sure atleast that every aspect is thought of.
@@Bjasmin87 I had an upright mri no flexion extension- it shows minor disc bulges and loss of lordosis can this cause pots
There is a comfort in knowing that someone else understands what you are going through. I thank you for sharing with us, so that we don’t feel so alone in this up hill battle.
Thank you for sharing this!
Thank you for this movie ❤️
Thank you for this video
I’m constantly surprised and saddened by the hundreds of very bad ailments humans suffer. This young lady is so lovely and strong. I wish her the very best life she can have. I did see the little dog….
this. omg you explained this so well.
Thank you for sharing
My husband age 54 is going thru this now- it’s awful. He is in the process of seeing a variety of drs and only cardio now seemed to put a name to it - of course more testing needed. My heart goes out to you you’re so young. I hope at the time I see this you are doing better
I love this video. it'll definitely help people understand what it feels like being POTS patient
You are amazing and I thank you from the bottom of my tachy heart for being vulnerable, open and honest in your suffering and helping others understand our life. But also helping those who suffer not feel so alone. You said so many things that I have felt before but never spoke. Thank you!! Instant subscriber
Thank you so much for sharing this & bringing awareness to what life with POTS is like 💙💙💙
Wow and thank you so much for this amazing video! I am 5 years into POTS and very much needed your video today. Also saving and sharing.. everything you said and showed is spot on. I wish you - and all of us - more wellness and peace on the tougher days.
This is beautiful. I want to show everyone this because it captures what we go through so eloquently
I have POTS also, YOU did such a great job explaining what we experience, THANK YOU
Thank you for sharing your story, and bringing awareness to everyday life with POTS. You should be so proud of how far you’ve come! Will definitely be sharing this video with family & friends! God bless ❤
I feel for everyone dealing. With an illness, that put you through toture.
Excellent communication of the reality of living daily with a limiting health condition like POTS! It says it all!
You described exactly what I felt a year ago I couldn't walk at all without feeling absolutely horrid it was truly horrible. It feels good to know that I'm not just crazy or making stuff up in my head but it's also heartbreaking to know that I have POTS.
This was really great. Really captured it. Was diagnosed two weeks ago. Same thing as you. Elation at being diagnosed, now the reality of what it means. Thank you for sharing.. I shed a little tear for you and me.
This video made me so happy. It explained POTS so well. I got diagnosed with it 5 months ago and it has been so difficult. Both to experience and to explain to people. Thank you so much for making this video.
Hello, very informative video and easily understood! Great advocacy please make more videos! Bless you and your strength ☺️
the run analogy is so true
thank you
Thank you so much for this❤️This really hit home for me on so many levels. I did my first small hike last weekend - my friend carried my backpack and water bottle for me. We sat down every 300 ft or so.
I’ve been in this for almost 2 years now , and your story gives me hope for managing this condition❤️
Not sure if you remember me but we went to high school together. Stumbled across this and I gotta say you're awesome for making this . Hope you're doing well
Thank you so much for sharing your story. I got this condition while having COVID and didn’t understand what was happening. Now it’s a bit more clearer. I pray to God that with the clarity we can move forward.
What an awesome video, thanks for that. And what a fantastic dog! I have lupus, and a bunch of new symptoms the last few months that really fit the symptoms of POTS. I did the at home test a couple days ago, my heart rate went from 66 to 108 standing up. I do not like standing up for long periods. I've fainted once. Oh, I've done a few more tests - and my heart rate doesn't always go super high. So I'm not sure that means I have it or not. But a tiny amount of "exercise" (doing only a speck more than nothing), and my heart rate goes up above 100 and I get way out of breath, and I'm basically only doing slightly more than just standing there. Kind of like you described, you didn't do a run, but you are tired and out of breath like you just did a run. I get a lot of trembling too.
Excellent job sharing what this feels like. I was diagnosed at 17 and consistently passed out at school and was diagnosed relatively quickly because mom had it too. I started on Fludrocortisone and symptoms improved but I had to be very mindful as you've described.
Symptoms were completely gone before turning 19. They came back so strongly when I turned 25 I had to leave my job and had great difficulty trying to navigate my care.
At 29 I was diagnosed with Crohn's and my world fell apart. I was hospitalized of and on for a few months which turned it to be a blessing because that's where I discovered compression stockings.
It has been 6 years and I'm more stable than I ever imagined possible. The combination of 20-30mmgh compression stockings while I'm awake, Fludrocortisone, allowing adequate rest, hydration, eating Celtic sea salt and really listening to my body has internally improved my quality of life.
I certainly have flares and bad days with both conditions but am learning to show myself grace and be honest with myself when planning things. I love hiking and 100% related to what you said. I recently vacationed in the Blue Ridge mountains and horribly underestimated what my energy would be and how's much was required to enjoy the trip as I'd expected.
I was very active and after being diagnosed I felt as though my life came crashing down. I still struggle with feeling depressed at times but am thankful for the awareness and gratitude for each moment. Health is so important and experiencing it being taken away in an instant for nearly two decades is very humbling.
God kept me here to encourage others as I'm sure He did with you. You're in my prayers for continued strength and endurance. You're never going through anything alone, He is always with us even when we don't feel it. ❤️🙏🤗
Thank you again for sharing your story.
Are you able to drive? My license was just suspended until they make a final diagnosis
@@kourtneys.plant.korner765 @Kourtneys.Plant.Korner Yes, I still have my license. It's rare I get to the point where I'll faint because the combination of compression stockings, Fludrocortisone and staying hydrated usually makes my symptoms manageable. I definitely still have flares but have been dealing with those long enough I can feel it coming on and just rest. What are the requirements for keeping a license? I hope the suspension is lifted. Keep me posted.
i have pots too i was diagnosed with it back in december 2021 when i was 13 i’m now 14. since i was 7 i’ve had epilepsy and started passing out about 3 years ago, May 2021 i had a bike wreck and broke both sides of my jaw and after that i was more dizzy than usual and couldn’t stand without everything going black and i get dizzy, i never passed out after standing up so my doctors just said i was standing up to fast but after a lot of tests we finally found out i had pots and since then i’ve love seeing other peoples point of views with pots and how they deal with it and it really helps me. you are doing absolutely amazing and i hope things get better for you❤️❤️
I've been struggling with this for years now.. I'm self diagnosing because countless amounts of doctors have failed me, going to get tested next week 🥺 I really hope to see a diagnosis one day
My whole life I've been called lazy.. even after losing 75 pounds I was still "lazy" and in bed all day. Can't explain how heartbreaking it is
Suck when you got no answer.
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 🇦🇺
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. 💚
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 should look into upper cervical instability/issues.
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 🙏🏻
Have you had a scan standing upright?
It could be that the discs closest to the head has moved and therefore the vegusnerv is causing POTS.
It is called chiari and or intercraniell instability and can be fixed🌸.
I have had all of these symptoms without the fainting but had a concussion also and I am gonna make sure I get that upright scan to make sure atleast that every aspect is thought of.
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.
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...
Wow! Thank you so much for this video. I have not been diagnosed with POTS. Doctors over here don’t know that that is. They have been searching for what’s wrong with me for 15 months. That’s how long it has been since I fainted (syncope) while going for a run. I was totally fine before it happend. But tired from an long day of cleaning the house and stress. I felt my heart pound like a bouncy ball in my chest seconds before I fell with face first to the ground.
The doctors have tried CT, MR, electrophysiology, and they have operated a loop recorder in my chest to try to figure out my heart rhythm problem.
I have always felt dizzy when I stand up, in periods. I have fainted a few times growing up, but always used to say it was because I ate too little or stood up to fast.
I have clear symptoms of heart palpitations and cramps when I bend over to pick something up, or when I carry something, push something, drink coffee, eat too much and so on. The doctors never seem to find out what’s wrong and I can’t seem to get them to send me to a neurological check.
Could this be POTS? I have not fainted again after this run, but that’s probably because I have pretty much laid in bed and stayed very calm physically since it happend. I’m so afraid of my heart and getting a high pulse.
I struggle with dizziness when I stand up for more than 5 min. But mostly not if I’m cooking or standing up while working on something. It’s mostly when I stand and talk to people. I try to escape and find an excuse to get out of the situation without having to say I feel like I’m about to faint. Don’t want no drama
I felt something similar to this after recovering from COVID. I had almost every heart test done under the sun and everything came back normal except for tachycardia. from my heart ultrasound, my cardiologist actually found fluid in my lungs which was essentially causing the symptoms- lightheadedness, extreme fatigue, tachycardia, shortness of breath, palpitations etc- but after a few months they magically disappeared. i also have anxiety disorder which practically raises my heart rate a lot which is scary and not fun. I’m sorry you are going through this :/ wishing you find some answers soon!
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.😢
I just got diagnosed with pots a month ago after months of being scared since I was passing out so much. Since it's not something that is shown outwards and I've only had one badish flair up at work (I tend to pass out in the mornings before work) so people don't really think I'm sick. I've been given a sitting position and people at work are thinking I'm fine and getting special treatment. It's been so frustrating and I've had a lot of good cries after bad days. I'm missing a bit of work when I pass out more and we are trying meds now but they aren't really helping yet. But let's hope it gets there soon
My child 17 is Currently starting testing for this she has struggled for several years . I am hoping this will give us some answers.
I don’t faint but if I over exert my body I get that crash feeling and do what you do and kneel on the floor. I was diagnosed just this year. I was so frustrated after I fell in 2020 that my mobility took a turn but it wasn’t just because of my leg after the fall. Trauma can cause POTS to flare, no doctor knew what was wrong with me until I found an amazing doctor that did the table test and he was very concerned that no other doctor did that with me. For years I was frustrated that I had to do things sitting down or get a cane to go places when I used to be able to walk a 4k just fine or go places by myself.
Some people can reverse pots and I hope you can take measures to do so and my self I want to travel and see the world I know there’s hope. ❤
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.
I haven't fainted yet but i get really close, i can feel my heart skip beats and pound in my head that it makes it hard to sleep, my left leg has a pulse. Doctors just shrugged me off since they dont have specialists in my country and doctors only look for terminal signs. One even told me to just get up and work out. All i ever wanted to do was go back to working out, i love working out its just physically impossible. I love driving and i couldn't even sit at the drivers seat without feeling sick
I have Pots Syndrome too It’s Hobble I know but keep you Chin up, You have Soo Much to Enjoy, Life to Short to worry
How much your heart rate be
Like girl, I saw that you have a resmed airsense 10. Are your AHIs mainly labeled central?
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..
hi miranda, I recently going through this since the pandemic started, I feel your pain. Have you tried Vitamin B1 thiamine w/ Magnesium? I hear it plays a big role in regulating the autonomic nerve system. it's an essential vitamin most ppl w/ pots are actually deficient in. It seemed to help ease my symptoms and now I can't live w/out Thiamine/Magnesium.
Hi, how are you now?)) Do you have the POTS symptoms yet? Or you are well. How much time did you take b1 and magnesium, is it realy helpful?
I hope you’ve had a cardiology consult to see if you are a candidate for a cardiac ablation . With SVT there is often an aberrant pathway from the SA node that needs ablation . In that case your symptoms would be completely relieved.
She doesn’t have SVT u idiot.
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 🙂
Are you in pain from neuropathy constantly and joint pain?.
What medications worked for you? I know it can differ for everyone I’m a fellow Potsie and curious to know what worked with you
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...
If anyone is suffering from any chronic illness especially pots please PLEASE look up the medical medium. You will find the root cause and how to fully heal and be free.
Do you have Pots ?? I heard something about medical medium but I dont know if it is work or not
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 get it worst when I'm pregnant or in hormone pills, or things like amatriptylene. But I still get vertigo and exercise never gets easier. Keto helped but I can't stick to it. Thanks for videos xx
Here's an interested video about your gut biome after Covid/vaccination. I know people get weirded out when they blame the vax, but nevertheless it turns out covid/vaxx destroys your gut biome . If you havent heard about this, here is the study. th-cam.com/video/E1BOgXFQMhs/w-d-xo.html But the beauty of it, no medication, just eating fermented food. harmless and worth a try when you have time. GL. If it works share it. If it doesn't sorry. Hopefully with time you will get better.
My question is when they finally diagnosed you...what did they say was the cause? Was it the concussion? Forgive me if I sound ignorant...just trying to understand.
I am finding support for the vagus nerve to be helpful so far (acetylcholine supports (APC Choline, Nicotine spray, Propranolol 10mg twice per day) and vagus nerve exercises. I think our sympathetic nervous systems are just out of control and not being muted by the para sympathetic nervous system.
Nicotine spray ?
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.
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 21 year old son just got diagnosed with pots by niece who is a ND doctor. Every doctor failed with my son he lost 130 pounds 😢a lot of big hospitals and doctors out there don’t even know what it is and how to treat it 😢😢😢it’s sad 😢 I am so sorry my dear
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.
I have pots and I feel this every day. This made me cry ❤
🌻🌹
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 fainted on 1/7/2023. My Dad and I visited Dad's mechanic in the hospital; he got a stroke. I fainted during the stroke recovery ward while Dad's mechanic. Today will be a phone call to the doctor and then an appointment. I am from the UK and 25 years. I am at university in the UK, finishing my first year. I will the second year at university in September.
im so over doctors not knowing and my family thinks im crazy
This is happening now with me 😢
I always throw up after a fainting episode ☹️
She’s doing better than I am. 🤷🏼♀️
vaccine does POTS too .
What medications you use for this
Probably some sort of beta blocker and possibly some sort of blood pressure control. I could be totally wrong though
@@1235gh you are absolutely right!
I take amlodipine bisoprolol furamate 2.5 4 times a day.
talk to Dr Nate Keiser - functional neurologist he might help
Yeah this thing really brings down quality of life smh😔.
I understand I have POTS it’s awful
It’s is I never would wish it on anyone I hate it so much I Can’t stand up or walk without my heart going fast 😢😢
@@caramariebensusan530 Same here, it really bad when I am outside in the heat need to drink tons of water to try to keep it down 🙏😢