I recently got diagnosed with POTS (I'm 16), and I've had the hardest struggle trying to find clarity, why me? My doctor told me to tripple my water intake since this syndrome causes extreme dehydration. The hardest part is I've been dealing with it since I was 8 years old, and was never told why. Symptoms severely increased as I hit my 16th birthday, and it was scary and painful. To anyone who is struggling with POTS, there are others out there. You are NOT alone. You are NOT the only one. Your feelings ARE VALID. Your pain IS VALID. Tell someone what you are feeling, and don't keep it in. 0.000000334 % of Americans get this, (1 in 3 million), and I am one of them. So to any readers who are getting diagnosed, Hi, I'm Sichen, 16, honor student, YOU ARE NOT ALONE
@@erickim2838 More often then not, people get diagnosed with POTS rather than anxiety. 90% of the time it's dehydration and anxiety. Its especially common to misdiagnose women
hey! I’m the same age as you and have pots from long covid. a lot of days it really sucks, as my friends are all out there experiencing life for the first time while I’ve been stuck in bed most days for months. I used to be a high-achieving honor student, top of my grade, and now I can’t even finish my schoolwork. it’s definitely a struggle most days, but it helps to know there are people out there going through the same thing. thank you for sharing :)
It started for me in Boxing Day December 2020. When I was about 13. I think it might have happened due to COVID as I was sick but didn’t test for it. But yeah it’s very rare tbh. I know no one at all who has POTS. And the doctors in NI NHS know it’s quite rare too, but symptoms occur in many teens, for other reasons or conditions.
I was recently diagnosed with Pots. I had a doctor try to tell me it’s anxiety and I told him that doesn’t make any sense because their is still a list of other symptoms that are not accounted for. Thankfully I followed up with my actual doctor and she diagnosed me with the confirmation of TTT
I'm glad she mentioned that it's not everyday...I usually have 3 good days with very mild symptoms and then 3 bad days...sometimes it fluctuates but yea..
Everyone is different. Qnd day to day is too,, its crazy.. I cant remember when I've even had a good day. My dizziness is very severe. Ive been unable to work for years. I also have several other issues with POTS. Glad you both have good days. Pregnancy and delivery is what made mine way worse
Im not dx yet but my symptoms line up pretty well and mine are pretty constant but it cycles between nearly passing out from sitting up and being able to stand up with feeling kinda dizzy.
Yep. I cycle too. Good days and bad days. Annnnd today is a bad day. Had to skip my morning shower because that makes me feel worse. I will shower before bed.
I feel like every single thing I have to do in a day is a chore and takes a lot of self discipline, determination, and planning. I refuse to let it get the best of me. The more you relax and lie around because it’s comfortable to do so the worse you make yourself in the long run. Everyday is a battle to keep up with those who don’t have this condition.
My heart rate goes up as soon as l stand up 140-250bpm. I get dizzy lightheaded brain fog heart palpitations passing out it’s very debilitating at times
I am so sad for you, they’re just trying to diagnose me with what’s going on I feel terrible all the time my heart is very irregular short of breath sweating all the time feeling faint and shaky, swallowing sometimes it’s almost like I forget how to do it and it strangles me it’s just weird
i believe that your heart rate goes up to 140+ but it’s impossible for it to go up to 250 without dying. take 220 and minus your age and that’s your max heart rate
I was diagnosed with POTS when i was 16, after taking medical tests for the longest time. Even now almost 10 years later i still strugel every day with it. Some days are really bad and other days are okay. The hardest thing was thinking Im alone, if you have this just know you are not alone.
I fortunately grew up with a mom who was diagnosed and didn't hide it from me, and I was diagnosed early. It's been crazy to see a spike in POTS awareness after covid has been activating POTS symptoms in some people. I know someone (actually a very close family friend) and she got covid and then diagnosed with POTS.
PoTS is very common among people with Ehlers-Danlos Syndrome (EDS). I have had it since I was around 12, but wasn't correctly diagnosed until my 40s when I found out I have EDS.
I am amazed! First of all I grew up in Jax. I graduated from from R.E.Lee high school. Today I am 61 years old. I started passing out at the age of 49. I was always healthy. It has took drs 12 years to figure out what was going on with me. This syndrome has cost me jobs, but most importantly it cost me my marriage of 30 years. It is devastating, embarrassing, humiliating because you look healthy! My own mother called me lazy when I had to sit down to keep from passing out! Thank you for this report! I continue to fight everyday!
I'm 28 and my mom called me lazy too. I don't have a job right now. I can't even do a house chores. I only have a good condition for a week. I don't know if I have POTS or not. Doctor told me I just mixed it up with anxiety. Bun the pain I felt is real. I guess I will ask my doctor about POTS on the next treatment.
I have POTS and I hope so to.. Unfortunately, I do know whatever causes it or even if they find a cause, it's nothing they can cure or fix. It's not like a Virus. POTS is Permanent Damage to your Autonomic Nerve System. It's up to your body if it can repair the nerve damage. Some people can improve from this, some get worse. POTS is 99% related to Multiple Sclerosis. It fits all the exact same symptoms. Only difference is MS is caused by the Nerves in the brain, POTS is in the nerves not in the brain but to the parts that need the proper electrical signal to function your Autonomic System
"definitely have that conversation with your doctor" - A little tone deaf considering most people with POTS see over 10 doctors and can take up to six years to get a diagnosis because not enough doctors know about it. The typical diagnosis process is to go to multiple providers who have no idea what is wrong, at which point many patients eventually get on a year long wait list and fly out of state to the handful of doctors in the country that can even recognize, much less treat POTS. The average diagnosis time is 6 years, so I don't think making a doctors appointment and speaking to a run of the mill practitioner is going to help someone much. They are up against a little known condition and a broken medical system but thank you for trying to bring awareness, it's just a little more complicated than a doctors visit.
This has been my life lately. I'm eternally grateful for my parents that found out about POTS because my medical crisis has been undiagnosed for almost a year now but the more I look into this the more my symptoms line up with it.
@@joshuan. So sorry, I was bedridden for a year, undiagnosed for another and then finally got on a year long waitlist to after that to see Dr. Grubb where I flew out of state to Ohio for him.Luckily he diagnosed me with POTS on the spot and I was able to get on medication to stabilize me. Now I have a primary care doctor that strictly treats POTS patients, and a team of about 30 doctors that help me figure out stuff ( My POTS diagnosis led me to discovering I had an undiagnosed connective tissue disorder called ehlers Danlos syndrome my entire life which most likely contributed to the development of POTS). Hang in there, find good doctors and always advocate for yourself. Do your own research. Better treatments are coming for us soon. Hope you can get on the road to feeling better.
@@guitarkatie Can I ask how did they diagnose you with EDS? I developed POTS after COVID and I suspect I also have undiagnosed EDS. I can do all of the hand movement tests for it. Always just thought I was double jointed, flat footed, etc. But everything seems to be connected.
Well, to be fair, the long (6 years as you mentioned) average time to get it diagnosed does not necessarily undermine the value of that comment. Having a conversation with your doctor about suspecting POTS would, in my understanding, put you well ahead of the average diagnostic process, as I'm assuming not many people outright suggest POTS at the start of that process. However, I completely agree that not enough doctors know about it and that diagnosing it, in general, is not in the best spot right now.
@@erble8645 yes you are correct. The first doctor unfortunately had never heard of it. The second doctor was able to diagnose dysautonomia but not POTS specifically. It was at that point that I did my own research and asked “Could this be POTS?” to which he replied “I don’t know”. I went to another doctor who did another tilt table that came back positive and at that point he said “ you have an illness that is POTS like, but not POTs. After these wasted years, I got the name of the U.S. expert and waited a year on his wait list and flew out of state to see him. Now, I believe his waitlist is three years long. Even if you said to a doctor today “ I think I have POTS,” you’d probably be years away from actually getting that diagnosis by virtue of a waitlist. They will leave you with a more general diagnosis like “dysautonomia” the umbrella which POTS falls under. I’ve handed doctors my other diagnosis’s as well. I told a rheumatologist I suspected ehlers- Danlos syndrome, she laughed. A few years later I went to a geneticist and was officially diagnosed. Same experience with Hashimoto’s thyroiditis. You can literally hand a doctor a diagnosis on a platter in our healthcare system and they’ll laugh at you. I don’t know what they are teaching these people in medical school.
I was a swimmer, but suddenly in the middle of the night I had palpitations while I was resting, and it started to come with effort and standing. This was madness, and my life was ruined.
I got diagnosed at age 7 I’ve been battling it sense I was 5. I think it’s great that they did a video on this. Very few people that don’t have pots know about it. The people that know about pots are usually people with pots our family or friends with people with pots.
@@unnikrishnanpillai4499 that could be one symptom if pots. One of the ways to get diagnosed is by doing a tilt table test. I have other underlying medical conditions that play a role in my pots. I have EDS and that caused my pots.
Crazy I’ve literally been going to the ED for fainting and feeling light headed just the last time they said I had tachycardia did the sitting lying standing test and just sent me home and said drink more water but go to a family doctor for more tests I hate that I probably know it’s pots my friend has it too
I've finally been diagnosed after 5 years of constant ER visits. I'm a retired Marine and combat vet, so doctors have been trying to put me on anxiety meds forever. I refused and I kept changing doctors. A neurologist finally diagnosed me after I had the table tilt test (felt like a torture session). I'm really thankful.
I so sympathize, went to ER 3 times myself. I was basically told I was a hypochondriac until I went through a sleep disorder study at the hospital and my blood oxygen levels kept dropping also in the middle of the night. (Greetings to anybody with POTS who cannot sleep!)
@@samhartford8677did they explain to you why that causes insomnia? My doctors all say my insomnia is from my PTSD or stress/anxiety and not my POTS but I’m starting to wonder if it really is just the POTS…
@@lexa_power I think it's the same mechanism: stress hormones, whether it's because of PTSD related nightmares or drop of blood pressure, both increase stress hormones and makes us alert/wake up.
@@samhartford8677 alertness for me as my issue is falling asleep not staying asleep, i never wake up in the middle of the night or anything haha i usually just can’t fall asleep at all for days or weeks on end. Thank you though you’re probably right!
@@lexa_power Yeah, very true. I was like that since childhood. As in it used to be my problem too (not falling asleep). At some point I think I became just too tired and the problem shifted to the occasional problem of not falling asleep and not being able to stay asleep. In don't know how I survived the 15-20 years in between, but in the sleep studies it was evidenced that I did not know that I was not sleeping during the night. This was my problem: I could not distinguish between sleep and half a sleep. Mostly I did not have dreams that I could remember and my nights were just filled with the same mental obsessions of having to work on something. Yet, because of the loads of adrenalin in my body because of the blood pressure fluctuations, that never stopped me. I was perky as a peach and worked about 150% working weeks because I could. I would not get tired, until I did and started vomiting.
What frustrates me the most is all of the testing I have gotten on my body for my symptoms… I’m talking ct angiography for my abdominal pain, mris, chest x rays, stress tests, wearing monitors for weeks at a time to see why I’m dizzy and if it’s from my heart rhythm and none of the testing confirmed anything… the entire time it was pots. I went to the ER three times for pots and was deemed a hypochondriac and treated like crap because of it… they told me I was dizzy because of anxiety and tried giving me an Ativan… and told me to seek mental help above anything because my anxiety is “manifesting” to physical symptoms. I argued with the doctor that it’s not anxiety and I’m so dizzy I can’t even drive… he said it could be a vestibular disorder… no. Pots needs to be tested for more often.. and I’ve had symptoms since 16 and finally at 26 have a diagnosis… I went 10 years with ppl telling me I’m crazy… my mother disowned me because she didn’t want to hear about my “symptoms” anymore. She’s fair weather person anyways but it was painful.. Pots was literally the cause of everything wrong with me.. constipation, abdominal pain, headaches dizziness, palpitations… and I was seeing three different specialists… a GI doc, a neurologist and a cardiologist putting my body through a sh*t ton of radiation and hell to get an answer.
POTS is essentially anxiety. It is your nervous system telling you its over worked and needs help. Seek a psychiatrist and you can be cured. The symptoms are real and you aren't consciously making them appear. I had all of the same symptoms my heart would shoot up when I would stand my blood pressure would drop, dizzy all the time, bloated, etc. These all went away once I handled the anxiety.
My last doctor couldn't figure it out and she asked me if I could come in while I was in a flare up. She has no idea. Finally she has done all her tests just like other previous doctors have and she come to the conclusion that it might be POTS. I've had two tilt table tests for BPPV and they said that I most likely have POTS but I need another type of doctor to diagnose it. Now, none of them have done much and I now need a wheelchair to try again for a diagnosis. But I have to have a recommendation for a wheelchair to get assistance getting one.
Can one have these symptoms while sitting or just walking? I have right neck pain, short breath, weird balance and a sudden flash type heat feeling. It comes out of nowhere and not during exercise.Then it goes away. Gotten many tests. Heart, blood, head, brain. They tell me I'm healthy no issues. But there is something wrong.
I was in the military when I was diagnosed, 22. I started having bad stomach pains, nausea every day, and I started passing out doing my every day routine. 23 ER visits before they even tried to test me for anything besides ulcers or something intestinal.
I've been diagnosed years ago with this, still have it, and this brought up a thought. In olden times, what if the "fainting maiden" was women who had PoTS?
I developed POTS after years of doctors refusing to diagnose me with Hashimoto's Disease (I have elevated antibodies) and Adrenal Dysfunction (I have all-day high cortisol). Then I went through chemo and it triggered an avalanche. After that, several other autoimmune disorders welcomed themselves in and life is one horror show after another. Yay me...😬
cringing at a lot of this. It was 4 years ago though. Its actually very common and debilitating and painful. what is uncommon is how so many medical professionals don't even know what it is. Lets do a story about that please
So insensitive to tell sick people they look good. You can't understand what they are dealing with to get to that point for 20 minutes. They pay for it later
I may have this now 😞 kept telling me it was anxiety then I had a severe vitamin deficiency now I may have a heart issues it’s between this and some other condition but they are certain I have a heart issue on top of all this cus I have blue hands on and off now which can be a indication as well as my fast heart rate lately with no anemia
I’m so sorry. I just got pots and was told I have anxiety for over a decade. My mom even said my symptoms were all in my head. My dizziness was so bad I could barely drive and go figure my freaking job was to drive. I also have developed a minor heart issue in combination with pots. I’m so sorry… it’s so scary to get through but we will get through this. Maybe one day they will have a cure. hugs.
GIRLLLL yes! One day I’m cleaning the house, outside hiking for 3 miles and the next day I feel like if I get out of bed I’m gonna tip over. For over a decade everyone around me called it depression/anxiety. My heart also beats really weird in the morning… I remember being 16 and getting out of bed every morning and almost passing out… i would feel dizzy working my first job all day:: my mom just would tell me I was iron deficient. It’s so weird I’m either ice cold or burning hot. Thankful it’s not debilitating every single day for us.. but it really sucks to have at all.
I've Been Battling This For Around 4 Years Now But Was Just Diagnosed This Year. Does Anyone Else Have Arm And Jaw Pain With Their Pots? It's Almost A Burning Ache Kind Of Pain That Feels Like A Tourniquet Around My Bicep ):
Yes. I get random pain like that in my individual arms and legs, never both or all. I have had the pain in my jaw 3 times. Twice was when my heart was doing acrobatics in my chest and once that made me want to pull out my own tooth. Went to dentist who said I need to go to my GP.
Diagnosed this year after a tilt table test and autonomic function test today was at the hospital heart rate 150 been in bed for hours feels like i ran a freaking marathon
Really I have the same thing omg Just thinking that you will live like this is a scary thing, especially if I was living normally months ago without symptoms and they suddenly appeared without warning.
So many things said wrong here. 1st you should know there are various degrees of POTS and that some people respond well to treatment so possibly his wife'a treatment really helps her. 2nd the symptoms are way more than they describe here. Also anything can cause it Autoimmune, Infectious disease, EDS, Mitochondrial disease, injuries, and much more. Basically anything that can injure tissues that autonomic nerves are woven through can cause it. So depending if those things can be treated is how bad or how long it can last. For example if hormone issues are the cause people can better over time, which is the case with some teens that have it. Also POTS doesn't cause fainting at all amd fainting is not caused by less oxygen to the brain. Some people with pots have over lapping other types of dysautonomia like Orthostatic Hypotension or NeuroCardiogenic Syncope. In those causes there is intercranial hypotension where the blood pressure is lowered in the brain when they are upright and so they faint. it's not dangerous except from the fall dangers. Meds that help, keep their blood pressure higher like Midodrine and Florinef which retains salt and increase blood volume some. Most POTS people don't have Blood pressure drops so they can take low dose beta blockers to lower heir heart rate and have less symptoms with that. But the autonomic nervous system affect the entire body and every organ. But heart rate is a major disabling symptom
Because of the lack of blood to the head, P.O.T.S. can cause fainting and has for me many times and it is terrifying!! Maybe you didn't know but in in bad cases or even black outs I have where I don't go down, I just turn off fir a micro sec and catch myself standing and trip it's always just getting up, or bending down and coming back up, from a seat, but falling I had concussions and split my head open and broke bones and broke teeth from it. I had been standing too long, and everything went dark, and I was out, all the blood pooled to my feet, I didn't know early on O had P.O.T.S., but even after diagnosed with meds I would still pass out, hydrated during flares that would come on, or I would get suddenly dizzy. I have the kind with low B.P. and my then my heart races worse was 224. I called an ambulance. It was painful too.
Yes, the lady below is right. I personally don’t faint with POTS but many people do and it can be caused by a drop in blood pressure and just poor oxygenation to the blood. I was diagnosed by the top doctor in the U.S. Dr Grubb and he explained this to me. Also, POTS is likely autoimmune, both Dr. Grubb and another one of my doctors are doing research studies to prove this and they both have said the results so far as astonishing. In the future we will be treated with immune suppressive therapy, not the band-aids of beta blockers. EDS is very co-morbid, actually Dr. Grubb checks all his patients for hypermobility. He found it in me and I got formally diagnosed a few years later by a geneticist. I also have MCAS and other autoimmune issues like Hashimotos. POTS was the first thing that presented. I don’t get the low blood pressure, just in the morning but I’m okay after an electrolyte drink. I’ve been on atenolol for 7 years and it’s a life saver. It allowed me to go from disabled (bed bound for over a year) to functional.
@@AdrianaRoman-ec9jt I used a program of Integrated Medicine, w adaptogen diet and supplements with Dr. Eric Secor at Hartford Hospital, I did neuroplasticity for brain damage and TBI, and finally cannabis medicine 3 years ago. I was diagnosed by Dr. Fraser Henderson in MD, and I was given 5 years to live 8 years ago. I fired all my neurologists and allopathic med doctors and only do Integrated Medicine. I had HEDS/MCAS, Ankylosing Spondylitis, Syringomyelia, Tethered Cord, 30 brain lesions, partial paralysis, M.S. mis diagnosis, CSF leaks, features of Neuro Behçet’s Disease, Spina Bifida, severe osteoporosis, and wore 9 braces for CCI, and on every joint, Aspen Vista, etc. Other than being still tethered, and dealing with Adhesive Arachnoiditis in my cord from syringomyelia etc. w vertigo and fatigue I have no issues with any of those diagnoses, save the fusions I had from the Ankylosing Spondylitis etc. but they and all lesions/autoimmune disease have stopped. I haven’t been hyper mobile in 3 years and I never think about MCAS or histamine. I can eat anything I want and I work again after 11 years. I started with The Cussack Protocol on Facebook. I have my own group now. Cannabis was the missing piece for me.
@@joanneclark8256 I switched to an integrated medicine doctor 8 years ago when I was given 5 years to live. I did a program of neuroplasticity, adaptogen diet, other supplements, chelation of gadolinium toxicity with diatomaceous earth, and finally cannabis medicine. I threw out my braces and stopped almost all my pharmaceuticals after 21 years. It’s been 3 years now. Many of us have undetectable lyme, although it’s not really certain what the mechanism is. I am not the only one. You need to be convinced that hospital based allopathic medicine is a cult. It will keep you from what works. I fired all my neurologists 8 years ago and now I’m basically cured of 5 rare diseases and syndromes, I also had ankylosing spondylitis, 30 brain lesions, MS mis diagnosis, syringomyelia, tethered cord. I was diagnosed by Fraser Henderson in MD.
I have pots from having lyme disease for yrs. It is not right for this medical system to not help me with this problem. Long Lyme, long covid or whatever other illness this medical system denies does cause this. I've had mine for many yrs before covid.
i have pots, and this is a bit out of date, as we know of 3 types (not all doctors use them important) that explains different causes and and how it is best dealt with. this is just a note for anyone watching nowadays.
@@Siamese_lps1763 I was being stupid, and I'm sorry bout that, thank you for pointing out my comment, I removed my stupidity, but I'll fully remove the comment if you want. trust me, I truly understand. My pots has gotten several worse in this time, yet I'm sure you are going through more than me. I'll take down my comment if you feel it's wrong or if you feel it's offensive
@@unnikrishnanpillai4499 from what I know and my research, no, but please don't take that as final word because I could just not have found that information yet.
There's a little bit of underlying, though surely unintended, ableism in the way this news anchor talks about it. Notice the change in tone when she's speaking about how is poor woman can barely get out of bed, versus when she's up and about. She gets the compliments when she's up and about. I hope eventually we can stop valuing people based on how much they can do. Just be glad when they can do anything at all, but not diminish their value or feel sorry for them when they can't
@@sagarrana9183 She suggested that I have a high sodium diet and lots of liquids and I also take a drug called Nadalol which lowers my blood pressure but does help the tachycardia.
